Empowered Patient Podcast – Empowered Patient – Karen Jagoda

Welcome to the Empowered Patient Podcast with Karen Jagoda.  This show is a window into the latest innovations in digital health and the changing dynamic between doctors and patients.

Empowered Patient Podcast | Listen to Podcasts On Demand Free | TuneIn

Topics on the show include

  • the emergence of personalized medicine and breakthroughs in genomics
  • advances in biopharmaceuticals
  • age related diseases and aging in place
  • using big data from wearables and sensors
  • transparency in the medical marketplace
  • challenges for connected health entrepreneurs

The audience includes researchers, medical professionals, patient advocates, entrepreneurs, patients, caregivers, solution providers, students, journalists, and investors.

Focus on Social Determinants of Health Driving Access-Focused Solutions with John Schwartz HSBlox TRANSCRIPT

 Download PDF

May 27, 2021

John Schwartz is Chief Revenue Officer at HSBlox and he strongly believes that care coordination is essential for all patients. The challenge is how can healthcare stakeholders improve the delivery of Social Determinants of Health (SDOH) to better serve vulnerable people.  Aligning medical and social care needs is a…Read More


Focus on Social Determinants of Health Driving Access-Focused Solutions with John Schwartz HSBlox

https://html5-player.libsyn.com/embed/episode/id/19253831/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 27, 2021

John Schwartz is Chief Revenue Officer at HSBlox and he strongly believes that care coordination is essential for all patients. The challenge is how can healthcare stakeholders improve the delivery of Social Determinants of Health (SDOH) to better serve vulnerable people.  Aligning medical and social care needs is a…Read More


Stimulating Invariant Natural Killer T-Cells to Boost Immune System in Fight Against Cancer with Dr. Ian Walters Portage Biotech TRANSCRIPT

 Download PDF

May 25, 2021

Dr. Ian Walters is CEO of Portage Biotech is building a pipeline of novel immunotherapies for the treatment of cancer particularly for patients who do not respond to current therapies.  The key is stimulating a type of immune cell called invariant natural killer T-cell which works with the adaptive immune system to…Read More


Stimulating Invariant Natural Killer T-Cells to Boost Immune System in Fight Against Cancer with Dr. Ian Walters Portage Biotech

https://html5-player.libsyn.com/embed/episode/id/19227539/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 25, 2021

Dr. Ian Walters is CEO of Portage Biotech is building a pipeline of novel immunotherapies for the treatment of cancer particularly for patients who do not respond to current therapies.  The key is stimulating a type of immune cell called invariant natural killer T-cell which works with the adaptive immune system to…Read More


Focus on Protein Misfolding Leading to Drug Discovery Through Use of Supercomputer and Computational Chemistry with Manolo Bellotto Gain Therapeutics TRANSCRIPT

 Download PDF

May 24, 2021

Manolo Bellotto, PhD is General Manager and President Gain Therapeutics and dedicated to redefining drug discovery through the use of supercomputers and proprietary algorithms to understand rare diseases and diseases where there is a high medical need related to protein misfolding. These indications include cancer,…Read More


Focus on Protein Misfolding Leading to Drug Discovery Through Use of Supercomputer and Computational Chemistry with Manolo Bellotto Gain Therapeutics

https://html5-player.libsyn.com/embed/episode/id/19220216/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 24, 2021

Manolo Bellotto, PhD is General Manager and President Gain Therapeutics and dedicated to redefining drug discovery through the use of supercomputers and proprietary algorithms to understand rare diseases and diseases where there is a high medical need related to protein misfolding. These indications include cancer,…Read More


Encouraging Lifestyle Changes Driving Significant Impact on Chronic Conditions with Tim Aumueller Avidon Health TRANSCRIPT

 Download PDF

May 20, 2021

Tim Aumueller is the Co-CEO of Avidon Health and an expert on combining digital solutions and human coaching to help patients living with chronic diseases make lifestyle changes.  While drugs will most likely always be part of a treatment plan, direct behavior change science is demonstrating the impact that healthy…Read More


Encouraging Lifestyle Changes Driving Significant Impact on Chronic Conditions with Tim Aumueller Avidon Health

https://html5-player.libsyn.com/embed/episode/id/19170230/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 20, 2021

Tim Aumueller is the Co-CEO of Avidon Health and an expert on combining digital solutions and human coaching to help patients living with chronic diseases make lifestyle changes.  While drugs will most likely always be part of a treatment plan, direct behavior change science is demonstrating the impact that healthy…Read More


Dynamic Online Community and Resources for Patients with Rare Diseases with Dr. Kate Burke and Jed PatientsLikeMe TRANSCRIPT

 Download PDF

May 18, 2021

Dr. Kate Burke is Senior Medical Advisor at PatientsLikeMe and Jed is a patient leader, advocate and patient with a range of conditions including ankylosing spondylitis (AS) and Lyme disease. They join me on the podcast to talk about the robust online community PatientsLikeMe and how it helps patients with rare diseases…Read More


Dynamic Online Community and Resources for Patients with Rare Diseases with Dr. Kate Burke and Jed PatientsLikeMe

https://html5-player.libsyn.com/embed/episode/id/19140641/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 18, 2021

Dr. Kate Burke is Senior Medical Advisor at PatientsLikeMe and Jed is a patient leader, advocate and patient with a range of conditions including ankylosing spondylitis (AS) and Lyme disease. They join me on the podcast to talk about the robust online community PatientsLikeMe and how it helps patients with rare diseases…Read More


Whole Body Scanning with Smartphone Camera Leads to Actionable Health Data with Vlado Bosanac Advanced Human Imaging TRANSCRIPT

 Download PDF

May 17, 2021

Vlado Bosanac is Co-Founder of Advanced Human Imaging, a B2B tech company based in Australia.  Using the camera on a smart phone, their applications can accurately track 12,000 data points across the human form to give a number of the markers that a doctor would look at. Giving this sort of information to individuals…Read More


Whole Body Scanning with Smartphone Camera Leads to Actionable Health Data with Vlado Bosanac Advanced Human Imaging

https://html5-player.libsyn.com/embed/episode/id/19124501/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 17, 2021

Vlado Bosanac is Co-Founder of Advanced Human Imaging, a B2B tech company based in Australia.  Using the camera on a smart phone, their applications can accurately track 12,000 data points across the human form to give a number of the markers that a doctor would look at. Giving this sort of information to individuals…Read More


Addressing Social Determinants of Health in Marginalized and Unrepresented Communities with Kistein Monkhouse Patient Orator TRANSCRIPT

 Download PDF

May 12, 2021

Kistein Monkhouse is the Founder of Patient Orator, a start-up that is focused on providing services to racial and ethnic minorities, lower-income communities, the elderly, LGBT communities and other people who are marginalized or underrepresented in receiving healthcare.

With a focus on systemic racism and implicit…Read More


Addressing Social Determinants of Health in Marginalized and Unrepresented Communities with Kistein Monkhouse Patient Orator

https://html5-player.libsyn.com/embed/episode/id/19070792/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 12, 2021

Kistein Monkhouse is the Founder of Patient Orator, a start-up that is focused on providing services to racial and ethnic minorities, lower-income communities, the elderly, LGBT communities and other people who are marginalized or underrepresented in receiving healthcare.

With a focus on systemic racism and implicit…Read More


Infusing Rhenium NanoLiposomes into Glioblastoma Showing High Efficacy Eradicating These Brain Tumors with Dr. Marc Hedrick PLUS Therapeutics TRANSCRIPT

 Download PDF

May 10, 2021

Dr. Marc Hedrick, President and CEO, PLUS Therapeutics describes the challenges of fighting brain cancers like glioblastoma. The PLUS lead investigational asset Rhenium NanoLiposome (RNL) delivers radiation directly to the tumor using a method called Convection Enhanced Delivery.  This approach allows the neurosurgeon…Read More


Infusing Rhenium NanoLiposomes into Glioblastoma Showing High Efficacy Eradicating These Brain Tumors with Dr. Marc Hedrick PLUS Therapeutics

https://html5-player.libsyn.com/embed/episode/id/19049990/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 10, 2021

Dr. Marc Hedrick, President and CEO, PLUS Therapeutics describes the challenges of fighting brain cancers like glioblastoma. The PLUS lead investigational asset Rhenium NanoLiposome (RNL) delivers radiation directly to the tumor using a method called Convection Enhanced Delivery.  This approach allows the neurosurgeon…Read More


Treating Hypersensitivity Disorders by Focusing on Specific Sodium Channel with John Mulcahy SiteOne Therapeutics TRANSCRIPT

 Download PDF

May 6, 2021

John Mulcahy PhD, President and CEO, SiteOne Therapeutics talks about broadening their pipeline from acute pain to hypersensitivity disorders like chronic cough and itching. Approach is to inhibit voltage-gated subtype sodium channel Nav1.7, a genetically validated target for pain. Stopping the pain signal in the…Read More


Treating Hypersensitivity Disorders by Focusing on Specific Sodium Channel with John Mulcahy SiteOne Therapeutics

https://html5-player.libsyn.com/embed/episode/id/18994922/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 6, 2021

John Mulcahy PhD, President and CEO, SiteOne Therapeutics talks about broadening their pipeline from acute pain to hypersensitivity disorders like chronic cough and itching. Approach is to inhibit voltage-gated subtype sodium channel Nav1.7, a genetically validated target for pain. Stopping the pain signal in the…Read More


Targeted Cancer Supportive Care Agent for Skin Toxicities with Michael McCullar and Hong Tang OnQuality Pharmaceuticals TRANSCRIPT

 Download PDF

May 4, 2021

Michael McCullar, CEO and Hong Tang, Co-Founder and Chief Medical Officer OnQuality Pharmaceuticals describe the pipeline they are building to address unmet clinical needs in the area of oncology supportive care for skin rashes such as Hand-Foot Skin Reaction and GI toxicities like chemotherapy-induced diarrhea.  As…Read More


Targeted Cancer Supportive Care Agent for Skin Toxicities with Michael McCullar and Hong Tang OnQuality Pharmaceuticals

https://html5-player.libsyn.com/embed/episode/id/18978200/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 4, 2021

Michael McCullar, CEO and Hong Tang, Co-Founder and Chief Medical Officer OnQuality Pharmaceuticals describe the pipeline they are building to address unmet clinical needs in the area of oncology supportive care for skin rashes such as Hand-Foot Skin Reaction and GI toxicities like chemotherapy-induced diarrhea.  As…Read More


Liquid Biopsy Diagnostics Accurately Identify Pre-Cancer and Cancer Genes with Richard Brand DiaCarta TRANSCRIPT

 Download PDF

May 3, 2021

Richard Brand, Chief Financial Officer, DiaCarta discusses precision molecular diagnostics that are being used for early detection of cancer. By using liquid biopsy technology, blood draw can be used for early detection and monitoring of people who have cancer and avoiding the need for a physical biopsy.  Also a…Read More


Liquid Biopsy Diagnostics Accurately Identify Pre-Cancer and Cancer Genes with Richard Brand DiaCarta

https://html5-player.libsyn.com/embed/episode/id/18958484/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

May 3, 2021

Richard Brand, Chief Financial Officer, DiaCarta discusses precision molecular diagnostics that are being used for early detection of cancer. By using liquid biopsy technology, blood draw can be used for early detection and monitoring of people who have cancer and avoiding the need for a physical biopsy.  Also a…Read More


Digital Health Platform Revolutionizing Management of Chronic Conditions with Rick Anderson DarioHealth TRANSCRIPT

 Download PDF

Apr 29, 2021

Rick Anderson, President and General Manager of North America, DarioHealth discusses how the company is leading the way on digital therapeutics combining digital technologies, artificial intelligence, software, and human coaching to help people manage chronic conditions including hypertension, diabetes, obesity and back…Read More


Digital Health Platform Revolutionizing Management of Chronic Conditions with Rick Anderson DarioHealth

https://html5-player.libsyn.com/embed/episode/id/18910262/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 29, 2021

Rick Anderson, President and General Manager of North America, DarioHealth discusses how the company is leading the way on digital therapeutics combining digital technologies, artificial intelligence, software, and human coaching to help people manage chronic conditions including hypertension, diabetes, obesity and back…Read More


Democratizing Diagnostics of Infectious Diseases with Ron Chiarello Alveo Technologies TRANSCRIPT

 Download PDF

Apr 28, 2021

Ron Chiarello PhD, Founder, CEO and Chairman of the Board, Alveo Technologies talks about the need for a low-cost, easy-to-use diagnostic platform to allow more people to detect and manage an infectious disease like COVID-19. Winning the XPRIZE Rapid COVID-19 Testing Competition has highlighted their be.well diagnostic…Read More


Democratizing Diagnostics of Infectious Diseases with Ron Chiarello Alveo Technologies

https://html5-player.libsyn.com/embed/episode/id/18897572/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 28, 2021

Ron Chiarello PhD, Founder, CEO and Chairman of the Board, Alveo Technologies talks about the need for a low-cost, easy-to-use diagnostic platform to allow more people to detect and manage an infectious disease like COVID-19. Winning the XPRIZE Rapid COVID-19 Testing Competition has highlighted their be.well diagnostic…Read More


Tackling Neuroinflammation to Reduce Pathological Brain Changes in Alzheimer’s Patients with Dr. R.J. Tesi INmune Bio TRANSCRIPT

 Download PDF

Apr 26, 2021

Dr. R.J. Tesi, President and CEO, INmune Bio shines light on the complexity of the immune system by pointing out that while much work has been done on the adaptive immune system, the key to treating Alzheimer’s might be to address the dysregulated innate immune system due to chronic inflammation. R.J. talks about…Read More


Tackling Neuroinflammation to Reduce Pathological Brain Changes in Alzheimer’s Patients with Dr. R.J. Tesi INmune Bio

https://html5-player.libsyn.com/embed/episode/id/18871580/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 26, 2021

Dr. R.J. Tesi, President and CEO, INmune Bio shines light on the complexity of the immune system by pointing out that while much work has been done on the adaptive immune system, the key to treating Alzheimer’s might be to address the dysregulated innate immune system due to chronic inflammation. R.J. talks about…Read More


Creativity and Mental Health Disorders with Mary Guillermin Mental Health Advocate Pellin Institute TRANSCRIPT

 Download PDF

Apr 25, 2021

Mary Guillermin, Director of Communications and Senior Pellin Practicioner at the Pellin Institute International and author talks about her book John Guillermin: The Man, The Myth, The Movies a story about her husband the British writer and film director of such films as King KongThe Towering Inferno, The Blue Max and…Read More


Creativity and Mental Health Disorders with Mary Guillermin Mental Health Advocate Pellin Institute

https://html5-player.libsyn.com/embed/episode/id/18847847/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 25, 2021

Mary Guillermin, Director of Communications and Senior Pellin Practicioner at the Pellin Institute International and author talks about her book John Guillermin: The Man, The Myth, The Movies a story about her husband the British writer and film director of such films as King KongThe Towering Inferno, The Blue Max and…Read More


Developing Microbiome Therapeutics to Improve Efficacy of Drugs and Vaccines with Stephanie Culler Persephone Biosciences TRANSCRIPT

 Download PDF

Apr 21, 2021

Stephanie Culler PhD, Co-Founder and CEO, Persephone Biosciences describes how the microbiome, the microbes that exist in our GI tract, impacts our overall health and specifically the immune system. Their goal is to leverage the impact of a healthy microbiome to improve the effectiveness of drugs and vaccines. By…Read More


Developing Microbiome Therapeutics to Improve Efficacy of Drugs and Vaccines with Stephanie Culler Persephone Biosciences

https://html5-player.libsyn.com/embed/episode/id/18814451/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 21, 2021

Stephanie Culler PhD, Co-Founder and CEO, Persephone Biosciences describes how the microbiome, the microbes that exist in our GI tract, impacts our overall health and specifically the immune system. Their goal is to leverage the impact of a healthy microbiome to improve the effectiveness of drugs and vaccines. By…Read More


Treating Alzheimer’s and Parkinson’s by Addressing Axonal Transport to Protect Nerve Cells from Dying with Maria Maccecchini Annovis Bio TRANSCRIPT

 Download PDF

Apr 20, 2021

Maria Maccecchini PhD, Founder, President, CEO, Annovis Bio has been on the path to find a way to protect nerve cells to maintain overall health. Lead therapy ANVS401 (phase 2) is designed to treat Alzheimer’s, Parkinson’s and other neurodegenerative diseases by tapping into the brain’s defense mechanism to get rid of…Read More


Treating Alzheimer’s and Parkinson’s by Addressing Axonal Transport to Protect Nerve Cells from Dying with Maria Maccecchini Annovis Bio

https://html5-player.libsyn.com/embed/episode/id/18799295/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 20, 2021

Maria Maccecchini PhD, Founder, President, CEO, Annovis Bio has been on the path to find a way to protect nerve cells to maintain overall health. Lead therapy ANVS401 (phase 2) is designed to treat Alzheimer’s, Parkinson’s and other neurodegenerative diseases by tapping into the brain’s defense mechanism to get rid of…Read More


Moving from Precision Medicine to Personalized Drugs to Fight Driver Mutations in Cancer with Usama Malik Fore Biotherapeutics TRANSCRIPT

 Download PDF

Apr 19, 2021

Usama Malik, CEO, Fore Biotherapeutics is aiming to treat patients with rare cancer mutations with a hyper targeted precision or personalized approach by using the Fore AI-based technology platform to investigate which drugs might work best for each mutation. While most cancer companies focus only on the most prevalent…Read More


Moving from Precision Medicine to Personalized Drugs to Fight Driver Mutations in Cancer with Usama Malik Fore Biotherapeutics

https://html5-player.libsyn.com/embed/episode/id/18768050/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 19, 2021

Usama Malik, CEO, Fore Biotherapeutics is aiming to treat patients with rare cancer mutations with a hyper targeted precision or personalized approach by using the Fore AI-based technology platform to investigate which drugs might work best for each mutation. While most cancer companies focus only on the most prevalent…Read More


Connected Nursery Ecosystem Generating Valuable Data for Parents and Researchers with Kurt Workman Owlet TRANSCRIPT

 Download PDF

Apr 15, 2021

Kurt Workman, Co-Founder and CEO, Owlet describes a digital healthcare platform for parents of infants that is part of a connected nursery ecosystem providing critical and reassuring real-time and archived data about the baby.  The pulse oximetry technology in their anchor product Smart Sock allows parents to track the…Read More


Connected Nursery Ecosystem Generating Valuable Data for Parents and Researchers with Kurt Workman Owlet

https://html5-player.libsyn.com/embed/episode/id/18715856/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 15, 2021

Kurt Workman, Co-Founder and CEO, Owlet describes a digital healthcare platform for parents of infants that is part of a connected nursery ecosystem providing critical and reassuring real time and archived data about the baby.  The pulse oximetry technology in their anchor product Smart Sock allows parents to track the…Read More


Arizona Surge Line Successfully Manages COVID-19 Patient Population Access to Care with Luke Smith Central Logic TRANSCRIPT

 Download PDF

Apr 14, 2021

Luke Smith, Client Operations Analyst, Central Logic and the Director of the Arizona Surge Line finally has time to reflect on the work that went into managing access to hospitals and post-acute care for patients suffering from COVID-10 throughout the state of Arizona, at one point the number 1 hot spot in the world for…Read More


Arizona Surge Line Successfully Manages COVID-19 Patient Population Access to Care with Luke Smith Central Logic

https://html5-player.libsyn.com/embed/episode/id/18694361/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 14, 2021

Luke Smith, Client Operations Analyst, Central Logic and the Director of the Arizona Surge Line finally has time to reflect on the work that went into managing access to hospitals and post-acute care for patients suffering from COVID-10 throughout the state of Arizona, at one point the number 1 hot spot in the world for…Read More


Advocating for Patients with Rare Neurological Disease LEMS with Amy Grover Catalyst Pharmaceuticals TRANSCRIPT

 Download PDF

Apr 13, 2021

Amy Grover, Director of Patient Advocacy, Catalyst Pharmaceuticals works primarily with patients suffering from Lambert-Eaton Myasthenic Syndrome LEMS an ultra-rare disease which is very similar to a larger rare disease myasthenia gravis MG. Working with the patient community and patient advocacy groups, Catalyst is…Read More


Advocating for Patients with Rare Neurological Disease LEMS with Amy Grover Catalyst Pharmaceuticals

https://html5-player.libsyn.com/embed/episode/id/18677087/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 13, 2021

Amy Grover, Director of Patient Advocacy, Catalyst Pharmaceuticals works primarily with patients suffering from Lambert-Eaton Myasthenic Syndrome LEMS an ultra-rare disease which is very similar to a larger rare disease myasthenia gravis MG. Working with the patient community and patient advocacy groups, Catalyst is…Read More


Solving the COVID-19 Pandemic as a Data Science Problem with Sally Embrey DataRobot TRANSCRIPT

 Download PDF

Apr 12, 2021

Sally Embrey, Vice President Public Health and Health Tech, DataRobot is applying knowledge from work as an enterprise AI company to attacking the problem of containing and defeating COVID-19. ContagionNET was created to identify leading and lagging indicators of the next COVID-19 hotspot and to help people understand…Read More


Solving the COVID-19 Pandemic as a Data Science Problem with Sally Embrey DataRobot

https://html5-player.libsyn.com/embed/episode/id/18670340/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 12, 2021

Sally Embrey, Vice President Public Health and Health Tech, DataRobot is applying knowledge from work as an enterprise AI company to attacking the problem of containing and defeating COVID-19. ContagionNET was created to identify leading and lagging indicators of the next COVID-19 hotspot and to help people understand…Read More


Treating Schizophrenia by Mitigating Peripheral Side Effects from Existing Antipsychotics with Dr. Stephen Brannan Karuna Therapeutics TRANSCRIPT

 Download PDF

Apr 7, 2021

Dr. Stephen Brannan, Chief Medical Officer, Karuna Therapeutics discusses the need for creating and delivering transformative medicines for people living with psychiatric and neurological conditions particularly schizophrenia. Pairing the muscarinic agonist with a pan-cholinergic antagonist that does not cross into the…Read More


Treating Schizophrenia by Mitigating Peripheral Side Effects from Existing Antipsychotics with Dr. Stephen Brannan Karuna Therapeutics

https://html5-player.libsyn.com/embed/episode/id/18626186/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 7, 2021

Dr. Stephen Brannan, Chief Medical Officer, Karuna Therapeutics discusses the need for creating and delivering transformative medicines for people living with psychiatric and neurological conditions particularly schizophrenia. Pairing the muscarinic agonist with a pan-cholinergic antagonist that does not cross into the…Read More


Resetting the Immune System to Drive Long-Term Disease Remission in Autoimmune and Allergic Diseases with Jonathan Rigby Revolo Biotherapeutics TRANSCRIPT

 Download PDF

Apr 6, 2021

Jonathan Rigby, CEO, Revolo Biotherapeutics discusses the company’s revolutionary therapies powered to reset the immune system to achieve superior long-term remission for patients with autoimmune and allergic diseases, with less frequent chronic dosing and without suppression of the immune system. A goal that others…Read More


Resetting the Immune System to Drive Long-Term Disease Remission in Autoimmune and Allergic Diseases with Jonathan Rigby Revolo Biotherapeutics

https://html5-player.libsyn.com/embed/episode/id/18598718/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 6, 2021

Jonathan Rigby, CEO, Revolo Biotherapeutics discusses the company’s revolutionary therapies powered to reset the immune system to achieve superior long-term remission for patients with autoimmune and allergic diseases, with less frequent chronic dosing and without suppression of the immune system. A goal that others…Read More


Virtual Diabetes Management Providing Insights About Chemical and Cognitive Aspects with Anthony Comfort VisiQuate TRANSCRIPT

 Download PDF

Apr 5, 2021

Anthony Comfort, VP Product Management, VisiQuate reflects on how far science and technology have come in helping monitor the health of diabetics with a new understanding of chemical changes in the body as well as cognitive and behavioral aspects. With the change from manual monitoring blood glucose readings to…Read More


Virtual Diabetes Management Providing Insights About Chemical and Cognitive Aspects with Anthony Comfort VisiQuate

https://html5-player.libsyn.com/embed/episode/id/18592139/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Apr 5, 2021

Anthony Comfort, VP Product Management, VisiQuate reflects on how far science and technology have come in helping monitor the health of diabetics with a new understanding of chemical changes in the body as well as cognitive and behavioral aspects. With the change from manual monitoring blood glucose readings to…Read More


Advanced Skin Cancer Diagnostic Tests Overlay Biology on Top of Pathology to Determine Appropriate Treatment With Derek Maetzold Castle Bio TRANSCRIPT

 Download PDF

Mar 31, 2021

Derek Maetzold, President and CEO, Castle Biosciences is harnessing the power of genomics to understand the biology of skin cancer. Castle has developed genomic tests to determine how aggressive melanoma and squamous cell carcinoma are in order to better inform dermatologist and patients about intervention decisions….Read More


Advanced Skin Cancer Diagnostic Tests Overlay Biology on Top of Pathology to Determine Appropriate Treatment With Derek Maetzold Castle Bio

https://html5-player.libsyn.com/embed/episode/id/18543071/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 31, 2021

Derek Maetzold, President and CEO, Castle Biosciences is harnessing the power of genomics to understand the biology of skin cancer. Castle has developed genomic tests to determine how aggressive melanoma and squamous cell carcinoma are in order to better inform dermatologist and patients about intervention decisions….Read More


Relationship Between Genetics the Endocannabinoid System and Impact of Cannabis with Len May Endocanna Health TRANSCRIPT

 Download PDF

Mar 31, 2021

Len May, CEO, EndoCanna Health is aggressively exploring the genes that are associated with metabolism of cannabinoids and aiming for a better understanding of the endocannabinoid system to guide the use of cannabis for a wide range of conditions and disorders. With an eye to the complexity of the cannabis plant,…Read More


Relationship Between Genetics the Endocannabinoid System and Impact of Cannabis with Len May Endocanna Health

https://html5-player.libsyn.com/embed/episode/id/18529412/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 31, 2021

Len May, CEO, EndoCanna Health is aggressively exploring the genes that are associated with metabolism of cannabinoids and aiming for a better understanding of the endocannabinoid system to guide the use of cannabis for a wide range of conditions and disorders. With an eye to the complexity of the cannabis plant,…Read More


Biosynthesizing Psilocybin to Treat Mental Illness and Other Neurological Disorders with Evan Levine PsyBio Therapeutics TRANSCRIPT

 Download PDF

Mar 30, 2021

Evan Levine, Co-Founder and CEO, PsyBio Therapeutics is pursuing a paradigm shift in the treatment of mental illness and other neurological disorders by using psychedelics and hallucinogenics. PsyBio biosynthesizes psilocybin and other psychoactive drugs from different plants  and fungi from genetically-modified…Read More


Biosynthesizing Psilocybin to Treat Mental Illness and Other Neurological Disorders with Evan Levine PsyBio Therapeutics

https://html5-player.libsyn.com/embed/episode/id/18511679/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 30, 2021

Evan Levine, Co-Founder and CEO, PsyBio Therapeutics is pursuing a paradigm shift in the treatment of mental illness and other neurological disorders by using psychedelics and hallucinogenics. PsyBio biosynthesizes psilocybin and other psychoactive drugs from different plants  and fungi from genetically-modified…Read More


Ensuring a Safe Return to Work Stay at Work Environment During the Pandemic with Michael Tkach Affinity TRANSCRIPT

 Download PDF

Mar 29, 2021

Michael Tkach, Chief Operating Officer and Chief Behavioral Health Officer, Affinity describes a variety of models for large-scale population healthcare management for Return to Work/Stay at Work in this time of COVID-19. With continuous monitoring, testing and data analysis, risk assessment is being used to keep…Read More


Ensuring a Safe Return to Work Stay at Work Environment During the Pandemic with Michael Tkach Affinity

https://html5-player.libsyn.com/embed/episode/id/18500594/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 29, 2021

Michael Tkach, Chief Operating Officer and Chief Behavioral Health Officer, Affinity describes a variety of models for large-scale population healthcare management for Return to Work/Stay at Work in this time of COVID-19. With continuous monitoring, testing and data analysis, risk assessment is being used to keep…Read More


New Treatment Option for Spinal Muscular Atrophy with Dr. Greg Rippon Genentech TRANSCRIPT

 Download PDF

Mar 25, 2021

Dr. Greg Rippon, Vice President and Chief Medical Partner of Neurology, Genentech shines light on SMA, spinal muscular atrophy, a severe inherited progressive neuromuscular disease and one of the most common rare diseases affecting babies. With the introduction of Evrysdi to the treatment options for SMA, an oral…Read More


New Treatment Option for Spinal Muscular Atrophy with Dr. Greg Rippon Genentech

https://html5-player.libsyn.com/embed/episode/id/18456827/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 25, 2021

Dr. Greg Rippon, Vice President and Chief Medical Partner of Neurology, Genentech shines light on SMA, spinal muscular atrophy, a severe inherited progressive neuromuscular disease and one of the most common rare diseases affecting babies. With the introduction of Evrysdi to the treatment options for SMA, an oral…Read More


Targeting and Modulating CRAC Channels to Treat Acute Pancreatitis and COVID-19 with Dr. Sudarshan Hebbar CalciMedica TRANSCRIPT

 Download PDF

Mar 24, 2021

Dr. Sudarshan Hebbar, Chief Medical Officer, CalciMedica talks about developing drugs that are focused on targeting CRAC channels, calcium release activated calcium channels, in order to modulate these channels to help treat diseases that have a significant inflammatory component.  Initially developed drugs for acute…Read More


Targeting and Modulating CRAC Channels to Treat Acute Pancreatitis and COVID-19 with Dr. Sudarshan Hebbar CalciMedica

https://html5-player.libsyn.com/embed/episode/id/18429086/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 24, 2021

Dr. Sudarshan Hebbar, Chief Medical Officer, CalciMedica talks about developing drugs that are focused on targeting CRAC channels, calcium release activated calcium channels, in order to modulate these channels to help treat diseases that have a significant inflammatory component.  Initially developed drugs for acute…Read More


Meeting Unmet Needs of Neurodegeneration and Disorders of Cognition by Targeting the NMDA Receptor with Dr. Aaron Koenig and Mike Quirk Sage Therapeutics TRANSCRIPT

 Download PDF

Mar 23, 2021

Dr. Aaron Koenig, Senior Medical Director and Mike Quirk, Vice President of pharmacology Sage Therapeutics focus on disorders of cognition and diseases that reflect determinants of impaired cognition such as Alzheimer’s, Parkinson’s and Huntington’s. Their drug Sage-718, a novel mechanism of action, targets a protein in…Read More


Meeting Unmet Needs of Neurodegeneration and Disorders of Cognition by Targeting the NMDA Receptor with Dr. Aaron Koenig and Mike Quirk Sage Therapeutics

https://html5-player.libsyn.com/embed/episode/id/18428081/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 23, 2021

Dr. Aaron Koenig, Senior Medical Director and Mike Quirk, Vice President of pharmacology Sage Therapeutics focus on disorders of cognition and diseases that reflect determinants of impaired cognition such as Alzheimer’s, Parkinson’s and Huntington’s. Their drug Sage-718, a novel mechanism of action, targets a protein in…Read More


New Long-Acting Methylphenidate Prodrug to Treat ADHD with Dr. Travis Mickle KemPharm TRANSCRIPT

 Download PDF

Mar 22, 2021

Dr. Travis Mickle President and CEO KemPharm describes the development of AZSTARYS, the stimulant-based methylphenidate prodrug treatment for ADHD one of the most common central nervous system diseases. This prodrug stimulates the norepinephrine dopamine reuptake inhibitor improving concentration, executive function,…Read More


New Long-Acting Methylphenidate Prodrug to Treat ADHD with Dr. Travis Mickle KemPharm

https://html5-player.libsyn.com/embed/episode/id/18402959/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 22, 2021

Dr. Travis Mickle President and CEO KemPharm describes the development of AZSTARYS, the stimulant-based methylphenidate prodrug treatment for ADHD one of the most common central nervous system diseases. This prodrug stimulates the norepinephrine dopamine reuptake inhibitor improving concentration, executive function,…Read More


Developing Recombinant GDF11 to Promote Healthy Vasculature and Treat Age-Related Diseases with Dr. Mark Allen Elevian TRANSCRIPT

 Download PDF

Mar 18, 2021

Dr. Mark Allen, Co-Founder and CEO, Elevian is looking to disrupt the longevity business by developing a recombinant GDF11 to treat and prevent multiple age-related diseases. The first application being investigated is for stroke recovery drawing on the discovery that GDF11 decreases with age and when replenished,…Read More


Developing Recombinant GDF11 to Promote Healthy Vasculature and Treat Age-Related Diseases with Dr. Mark Allen Elevian

https://html5-player.libsyn.com/embed/episode/id/18371651/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 18, 2021

Dr. Mark Allen, Co-Founder and CEO, Elevian is looking to disrupt the longevity business by developing a recombinant GDF11 to treat and prevent multiple age-related diseases. The first application being investigated is for stroke recovery drawing on the discovery that GDF11 decreases with age and when replenished,…Read More


Breakthrough Therapy for Treating Major Depressive Disorder with Dr. Steve Kanes Sage Therapeutics TRANSCRIPT

 Download PDF

Mar 17, 2021

Dr. Steve Kanes, Chief Medical Officer, Sage Therapeutics takes the view that mental disorders and brain health disorders need to be treated like any other medicine. Driving this paradigm shift is the development of breakthrough zuranalone, an oral limited-time treatment to replace taking medicine chronically for those…Read More


Breakthrough Therapy for Treating Major Depressive Disorder with Dr. Steve Kanes Sage Therapeutics

https://html5-player.libsyn.com/embed/episode/id/18341411/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 17, 2021

Dr. Steve Kanes, Chief Medical Officer, Sage Therapeutics takes the view that mental disorders and brain health disorders need to be treated like any other medicine. Driving this paradigm shift is the development of breakthrough zuranalone, an oral limited-time treatment to replace taking medicine chronically for those…Read More


Using Blockchain to Secure Health Record Access and Sharing with Louis Martinez EHR Data TRANSCRIPT

 Download PDF

Mar 16, 2021

Louis Martinez, Chief Information Officer, EHR Data shines a light on the decentralization of healthcare data collected by providers, insurance carriers, pharmacists and other medical service providers. With a goal of centralizing disparate health data and providing access at point of care, EHR is using blockchain to…Read More


Using Blockchain to Secure Health Record Access and Sharing with Louis Martinez EHR Data

https://html5-player.libsyn.com/embed/episode/id/18320762/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 16, 2021

Louis Martinez, Chief Information Officer, EHR Data shines a light on the decentralization of healthcare data collected by providers, insurance carriers, pharmacists and other medical service providers. With a goal of centralizing disparate health data and providing access at point of care, EHR is using blockchain to…Read More


Developing Accessible Monoclonal Antibodies to Treat COVID-19 with Vu Truong Aridis Pharmaceuticals TRANSCRIPT

 Download PDF

Mar 15, 2021

Vu Truong, CEO, Aridis Pharmaceuticals is taking on the challenge of making an inhaled monoclonal antibody to treat COVID-19 to allow for the easier patient access.  Drawing on their work in infectious diseases and with a number of monoclonal antibodies candidates to treat bacteria infection associated with superbugs…Read More


Developing Accessible Monoclonal Antibodies to Treat COVID-19 with Vu Truong Aridis Pharmaceuticals

https://html5-player.libsyn.com/embed/episode/id/18317888/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 15, 2021

Vu Truong, CEO, Aridis Pharmaceuticals is taking on the challenge of making an inhaled monoclonal antibody to treat COVID-19 to allow for the easier patient access.  Drawing on their work in infectious diseases and with a number of monoclonal antibodies candidates to treat bacteria infection associated with superbugs…Read More


Optimizing Health System Resources for Patients Needing Acute Care with Niloy Sanyal LeanTaaS TRANSCRIPT

 Download PDF

Mar 10, 2021

Niloy Sanyal, Chief Marketing Officer, LeanTaaS is focused on the current state of the healthcare system in this wartime environment. In light of COVID-19 challenges particularly for those patients needing acute care, the need to optimize use of operating rooms, ICU beds, infusion chairs, and medical professionals…Read More


Optimizing Health System Resources for Patients Needing Acute Care with Niloy Sanyal LeanTaaS

https://html5-player.libsyn.com/embed/episode/id/18268682/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 10, 2021

Niloy Sanyal, Chief Marketing Officer, LeanTaaS is focused on the current state of the healthcare system in this wartime environment. In light of COVID-19 challenges particularly for those patients needing acute care, the need to optimize use of operating rooms, ICU beds, infusion chairs, and medical professionals…Read More


Building Digitally-Enabled Healthcare Tools to Serve a Global Audience with Mariya Pylypiv UpHealth TRANSCRIPT

 Download PDF

Mar 7, 2021

Mariya Pylypiv, Founder and Co-Chairwoman, UpHealth talks about empowering patients suffering from chronic conditions with a global comprehensive digital health technology and tech-enabled services platform. Working with care providers, health systems and payers, UpHealth is addressing the complex medical, behavioral,…Read More


Building Digitally-Enabled Healthcare Tools to Serve a Global Audience with Mariya Pylypiv UpHealth

https://html5-player.libsyn.com/embed/episode/id/18210059/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 7, 2021

Mariya Pylypiv, Founder and Co-Chairwoman, UpHealth talks about empowering patients suffering from chronic conditions with a global comprehensive digital health technology and tech-enabled services platform. Working with care providers, health systems and payers, UpHealth is addressing the complex medical, behavioral,…Read More


Using Biosimulation to Develop Pediatric Therapeutics with Lynne Georgopoulos Certara TRANSCRIPT

 Download PDF

Mar 3, 2021

Lynne Georgopoulos, VP Regulatory Strategy, Certara describes the company’s platform to optimize pediatric drug development using biosimulation.  With an eye on pediatric diseases, Certara is employing modeling and simulation to determine how a drug developed for adults may be metabolized in children, including…Read More


Using Biosimulation to Develop Pediatric Therapeutics with Lynne Georgopoulos Certara

https://html5-player.libsyn.com/embed/episode/id/18176978/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 3, 2021

Lynne Georgopoulos, VP Regulatory Strategy, Certara describes the company’s platform to optimize pediatric drug development using biosimulation.  With an eye on pediatric diseases, Certara is employing modeling and simulation to determine how a drug developed for adults may be metabolized in children, including…Read More


COVID-19 Driving More Posture Related Disorders with Dr. Romina Ghassemi Think Healthy TRANSCRIPT

 Download PDF

Mar 1, 2021

Dr. Romina Ghassemi, chiropractor and founder of Think Healthy is an expert on posture and is raising awareness about the need to address the health of the full spine along with solutions to address stress and related diseases. Her traditional business has been with the aging population to reduce pain and insure…Read More


COVID-19 Driving More Posture Related Disorders with Dr. Romina Ghassemi Think Healthy

https://html5-player.libsyn.com/embed/episode/id/18128108/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Mar 1, 2021

Dr. Romina Ghassemi, chiropractor and founder of Think Healthy is an expert on posture and is raising awareness about the need to address the health of the full spine along with solutions to address stress and related diseases. Her traditional business has been with the aging population to reduce pain and insure…Read More


Developing Oral Drugs for Neurodegenerative Diseases Based on Bioenergetic Nanotherapeutics with Mark Mortenson Clene Nanomedicine TRANSCRIPT

 Download PDF

Feb 24, 2021

Mark Mortenson, Chief Science Officer, Clene Nanomedicine is combining physics with biology to develop its bioenergetic nanocatalyst drug candidates that accelerate neurorepair for patients with neurodegenerative disease. Using gold nanocrystals, the company is able to amplify bioenergetic reactions in patients that…Read More


From Beepers to Mobile Phones and the Future of Digital Health with Martin Cooper Inventor, Entrepreneur and Author TRANSCRIPT

 Download PDF

Feb 23, 2021

Martin Cooper, inventor, entrepreneur, and author of Cutting the Cord: The Cell Phone has Transformed Humanity reminds us of the twisted path the mobile phone has taken from the early roots of beepers, pagers, and car phones to the current form allowing for mobile health innovations. As the inventor of the DynaTAC, the…Read More


From Beepers to Mobile Phones and the Future of Digital Health with Martin Cooper Inventor, Entrepreneur and Author

https://html5-player.libsyn.com/embed/episode/id/18023759/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 23, 2021

Martin Cooper, inventor, entrepreneur, and author of Cutting the Cord: The Cell Phone has Transformed Humanity reminds us of the twisted path the mobile phone has taken from the early roots of beepers, pagers, and car phones to the current form allowing for mobile health innovations. As the inventor of the DynaTAC, the…Read More


Developing Oral Drugs for Neurodegenerative Diseases Based on Bioenergetic Nanotherapeutics with Mark Mortenson Clene Nanomedicine

https://html5-player.libsyn.com/embed/episode/id/18052898/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 23, 2021

Mark Mortenson, Chief Science Officer, Clene Nanomedicine is combining physics with biology to develop its bioenergetic nanocatalyst drug candidates that accelerate neurorepair for patients with neurodegenerative disease. Using gold nanocrystals, the company is able to amplify bioenergetic reactions in patients that…Read More


Business of Running a Hospital or Health System During a Pandemic with Walt Ellenberger SAP TRANSCRIPT

 Download PDF

Feb 22, 2021

Walt Ellenberger, Senior Director of Business Development and Strategic Alliance, SAP, sheds light on the new challenges in the healthcare environment as a result of COVID-19 on top of the move from quantity to quality of service and the changes already underway from being a doctor-centric to patient focused delivery…Read More


Business of Running a Hospital or Health System During a Pandemic with Walt Ellenberger SAP

https://html5-player.libsyn.com/embed/episode/id/18022214/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 22, 2021

Walt Ellenberger, Senior Director of Business Development and Strategic Alliance, SAP, sheds light on the new challenges in the healthcare environment as a result of COVID-19 on top of the move from quantity to quality of service and the changes already underway from being a doctor-centric to patient focused delivery…Read More


Long-Term Post-Acute and Home Health Care Challenges and Opportunities with Mary Henschel PointClickCare TRANSCRIPT

 Download PDF

Feb 17, 2021

Mary Henschel, Director of Home Health Strategy, PointClickCare brings an understanding of the value of technology to the long-term post-acute care (LTPAC) and home health environments. Looking at the spectrum of required care from short-term rehabilitation, to skilled nursing facilities, to bringing the SNF experience…Read More


Long-Term Post-Acute and Home Health Care Challenges and Opportunities with Mary Henschel PointClickCare

https://html5-player.libsyn.com/embed/episode/id/17985614/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 17, 2021

Mary Henschel, Director of Home Health Strategy, PointClickCare brings an understanding of the value of technology to the long-term post-acute care (LTPAC) and home health environments. Looking at the spectrum of required care from short-term rehabilitation, to skilled nursing facilities, to bringing the SNF experience…Read More


Optical Coherence Tomography Provides Intravascular Imaging with Unparalleled Granularity with Dr. Nick West Abbott TRANSCRIPT

 Download PDF

Feb 16, 2021

Dr. Nick West, Chief Medical Officer and DVP, Global Medical Affairs, Vascular Division, Abbott reveals the advances over traditional angiograms that Abbott is bringing to the market that change the ability to see inside blood vessels.  Using the Optical Coherence Tomography (OCT) to examine coronary arteries,…Read More


Optical Coherence Tomography Provides Intravascular Imaging with Unparalleled Granularity with Dr. Nick West Abbott

https://html5-player.libsyn.com/embed/episode/id/17961797/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 16, 2021

Dr. Nick West, Chief Medical Officer and DVP, Global Medical Affairs, Vascular Division, Abbott reveals the advances over traditional angiograms that Abbott is bringing to the market that change the ability to see inside blood vessels.  Using the Optical Coherence Tomography (OCT) to examine coronary arteries,…Read More


Attacking COVID-19 Virus Hiding in the Gastrointestinal Tract of Long-Haulers with James Sapirstein AzurRx BioPharma TRANSCRIPT

 Download PDF

Feb 15, 2021

James Sapirstein, President and CEO, AzurRx BioPharma, a clinical stage biopharmaceutical company specializing in therapies for gastrointestinal diseases talks about turning their focus to the virus that causes COVID-19. With a background in drug development for HIV and infectious diseases, James describes their…Read More


Attacking COVID-19 Virus Hiding in the Gastrointestinal Tract of Long-Haulers with James Sapirstein AzurRx BioPharma

https://html5-player.libsyn.com/embed/episode/id/17936900/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 15, 2021

James Sapirstein, President and CEO, AzurRx BioPharma, a clinical stage biopharmaceutical company specializing in therapies for gastrointestinal diseases talks about turning their focus to the virus that causes COVID-19. With a background in drug development for HIV and infectious diseases, James describes their…Read More


Reinventing Body Repair and Tissue Reconstruction with Christophe Bancel TISSIUM TRANSCRIPT

 Download PDF

Feb 10, 2021

Christophe Bancel, Co-Founder and CEO, TISSIUM is determined to change the way body and tissue repair during surgical procedures is conducted. Rather than the old techniques such as suturing, stapling and screwing that induce trauma to the body, TISSIUM believes that tissue reconstruction should be atraumatic. …Read More


Reinventing Body Repair and Tissue Reconstruction with Christophe Bancel TISSIUM

https://html5-player.libsyn.com/embed/episode/id/17890964/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 10, 2021

Christophe Bancel, Co-Founder and CEO, TISSIUM is determined to change the way body and tissue repair during surgical procedures is conducted. Rather than the old techniques such as suturing, stapling and screwing that induce trauma to the body, TISSIUM believes that tissue reconstruction should be atraumatic. …Read More


Developing a Universal Influenza Vaccine with Joseph Hernandez Blue Water Vaccines TRANSCRIPT

 Download PDF

Feb 9, 2021

Joseph Hernandez, Founder and CEO, Blue Water Vaccines identifies the underlying discover about the nature of the influenza virus which is driving the development of a novel universal flu vaccine that would be administered once for lifelong immunization. The economic and health implications of this vaccine include…Read More


Developing a Universal Influenza Vaccine with Joseph Hernandez Blue Water Vaccines

https://html5-player.libsyn.com/embed/episode/id/17874731/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 9, 2021

Joseph Hernandez, Founder and CEO, Blue Water Vaccines identifies the underlying discover about the nature of the influenza virus which is driving the development of a novel universal flu vaccine that would be administered once for lifelong immunization. The economic and health implications of this vaccine include…Read More


Developing Potent Oral Kinase Inhibitor to Treat Recurrent Difficult to Treat Brain Cancer with Scott Megaffin Adastra Pharmaceuticals TRANSCRIPT

 Download PDF

Feb 8, 2021

Scott Megaffin, CEO, Adastra Pharmaceuticals has taken on the challenge of developing first-in-class innovative therapeutics for the treatment of cancers with high unmet needs such as high-grade gliomas.  He talks about the Phase 1b clinical trial conducted by the National Cancer Institute evaluating zotiraciclib, a…Read More


Developing Potent Oral Kinase Inhibitor to Treat Recurrent Difficult to Treat Brain Cancer with Scott Megaffin Adastra Pharmaceuticals

https://html5-player.libsyn.com/embed/episode/id/17872547/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 8, 2021

Scott Megaffin, CEO, Adastra Pharmaceuticals has taken on the challenge of developing first-in-class innovative therapeutics for the treatment of cancers with high unmet needs such as high-grade gliomas.  He talks about the Phase 1b clinical trial conducted by the National Cancer Institute evaluating zotiraciclib, a…Read More


Healthcare Data Interoperability Driven by Transformative Cures Act Patient Access Rule with Eric Rosow Diameter Health TRANSCRIPT

 Download PDF

Feb 3, 2021

Eric Rosow, CEO and Co-Founder, Diameter Health shines light on the new ONC Cures Act and the significance of the Patient Access rule that mandates interoperability technology standards for payers.  The primary purpose of the interoperability rules is to enable patients to have secure access to their own health data. …Read More


Healthcare Data Interoperability Driven by Transformative Cures Act Patient Access Rule with Eric Rosow Diameter Health

https://html5-player.libsyn.com/embed/episode/id/17796932/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 3, 2021

Eric Rosow, CEO and Co-Founder, Diameter Health shines light on the new ONC Cures Act and the significance of the Patient Access rule that mandates interoperability technology standards for payers.  The primary purpose of the interoperability rules is to enable patients to have secure access to their own health data. …Read More


Investing in Transformative Oncology Therapies with Maina Bhaman Sofinnova Partners TRANSCRIPT

 Download PDF

Feb 2, 2021

Maina Bhaman, Partner, Capital Funds, Sofinnova Partners has a long record as a successful healthcare investor in oncology, hearing, cardiovascular and cell and gene therapy. She talks about their recent investments in Myricx Pharma, a startup from Imperial College and the Francis Crick Institute in London focused on…Read More


Investing in Transformative Oncology Therapies with Maina Bhaman Sofinnova Partners

https://html5-player.libsyn.com/embed/episode/id/17778965/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Feb 2, 2021

Maina Bhaman, Partner, Capital Funds, Sofinnova Partners has a long record as a successful healthcare investor in oncology, hearing, cardiovascular and cell and gene therapy. She talks about their recent investments in Myricx Pharma, a startup from Imperial College and the Francis Crick Institute in London focused on…Read More


Using Medical Gaming to Monitor Chronic Eye Disease of Aging with Edouard Gasser Tilak Healthcare TRANSCRIPT

 Download PDF

Jan 27, 2021

Edouard Gasser, CEO, Tilak Healthcare comes from the video gaming industry and is applying his knowledge about engaging mobile game players to an audience of those suffering from eye diseases of aging like AMD, age-related macular disease, or diabetic retinopathy.  Using the OdySight game prescribed by an…Read More


Using Medical Gaming to Monitor Chronic Eye Disease of Aging with Edouard Gasser Tilak Healthcare

https://html5-player.libsyn.com/embed/episode/id/17703470/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Jan 27, 2021

Edouard Gasser, CEO, Tilak Healthcare comes from the video gaming industry and is applying his knowledge about engaging mobile game players to an audience of those suffering from eye diseases of aging like AMD, age-related macular disease, or diabetic retinopathy.  Using the OdySight game prescribed by an…Read More


Supporting Complex Populations with Advanced Care Management Platform with Adam Sabloff VirtualHealth TRANSCRIPT

 Download PDF

Jan 25, 2021

Adam Sabloff, CEO and Founder, VirtualHealth works with health plans and care managers to facilitate strong relationships with patients covered by Medicare and Medicaid. The HELIOS® care management platform aggregates data across the healthcare continuum to create a centralized patient record allowing for interventions…Read More


Supporting Complex Populations with Advanced Care Management Platform with Adam Sabloff VirtualHealth

https://html5-player.libsyn.com/embed/episode/id/17669954/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Jan 25, 2021

Adam Sabloff, CEO and Founder, VirtualHealth works with health plans and care managers to facilitate strong relationships with patients covered by Medicare and Medicaid. The HELIOS® care management platform aggregates data across the healthcare continuum to create a centralized patient record allowing for interventions…Read More


Making Pediatric Cancer Survivable with Dr. Charles Keller Children’s Cancer Therapy Development Institute TRANSCRIPT

 Download PDF

Jan 20, 2021

Dr. Charles Keller, Scientific Director, Children’s Cancer Therapy Development Institute is working with a diverse team in this non-profit biotech to make all childhood cancers universally survivable.  Filling the preclinical gap, cc-TDI is moving drugs for pediatric brain tumors and muscle cancers into national…Read More


Making Pediatric Cancer Survivable with Dr. Charles Keller Children’s Cancer Therapy Development Institute

https://html5-player.libsyn.com/embed/episode/id/17621060/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Jan 20, 2021

Dr. Charles Keller, Scientific Director, Children’s Cancer Therapy Development Institute is working with a diverse team in this non-profit biotech to make all childhood cancers universally survivable.  Filling the preclinical gap, cc-TDI is moving drugs for pediatric brain tumors and muscle cancers into national…Read More


Lessons from Early Days of Treating COVID-19 with Dr. Teresa Girolami BelRed Internal Medicine TRANSCRIPT

 Download PDF

Jan 19, 2021

Dr. Teresa Girolami, Founder and CEO, BelRed Internal Medicine and Co-Founder Sound Health Solutions is an internist in Washington State and on the staff at Evergreen Hospital, the first hospital in the US to identify the COVID-19 virus. She points out lessons learned about the use of ventilators, the value of testing,…Read More


Lessons from Early Days of Treating COVID-19 with Dr. Teresa Girolami BelRed Internal Medicine

https://html5-player.libsyn.com/embed/episode/id/17600093/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Jan 19, 2021

Dr. Teresa Girolami, Founder and CEO, BelRed Internal Medicine and Co-Founder Sound Health Solutions is an internist in Washington State and on the staff at Evergreen Hospital, the first hospital in the US to identify the COVID-19 virus. She points out lessons learned about the use of ventilators, the value of testing,…Read More


Treating Severe Respiratory Failure in COVID-19 Patients with Dr. Jonathan Javitt NeuroRx TRANSCRIPT

 Download PDF

Jan 18, 2021

Dr. Jonathan Javitt, Founder, Chairman and CEO, NeuroRx talks about drawing on their work developing novel therapeutics for bipolar depression and respiratory disease to focus on a therapy, aviptadil also known as ZYESAMI, for critical COVID-19 especially those with advanced comorbidities. This peptide hormone VIP…Read More


Treating Severe Respiratory Failure in COVID-19 Patients with Dr. Jonathan Javitt NeuroRx

https://html5-player.libsyn.com/embed/episode/id/17574641/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Jan 18, 2021

Dr. Jonathan Javitt, Founder, Chairman and CEO, NeuroRx talks about drawing on their work developing novel therapeutics for bipolar depression and respiratory disease to focus on a therapy, aviptadil also known as ZYESAMI, for critical COVID-19 especially those with advanced comorbidities. This peptide hormone VIP…Read More


Impact of Implementation of Price Transparency by Hospitals and Health Plans with Lillian Phelps Availity TRANSCRIPT

 Download PDF

Jan 13, 2021

Lillian Phelps, Senior Director of Product Management, Availity shines light on the new HHS rules about price transparency for hospitals and health plans. These organizations now need to publish their standard rates as well as their contracted rates along with pricing for bundled services for over 70 specific services….Read More


Impact of Implementation of Price Transparency by Hospitals and Health Plans with Lillian Phelps Availity

https://html5-player.libsyn.com/embed/episode/id/17534795/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Jan 13, 2021

Lillian Phelps, Senior Director of Product Management, Availity shines light on the new HHS rules about price transparency for hospitals and health plans. These organizations now need to publish their standard rates as well as their contracted rates along with pricing for bundled services for over 70 specific services….Read More


Advanced Antibody Discovery Platform Generates COVID-19 Antibody Therapy with Ian Chan Abpro TRANSCRIPT

 Download PDF

Jan 11, 2021

Ian Chan, CEO, Abpro is developing a drug which is a COVID-19 neutralizing antibody that has demonstrated strong binding affinity for COVID-19 in a Phase 2/3 global trial. Using the Diverse Immune Platform, an advanced antibody discovery platform, Abpro is drawing on years of successful work developing neutralizing…Read More


Advanced Antibody Discovery Platform Generates COVID-19 Antibody Therapy with Ian Chan Abpro

https://html5-player.libsyn.com/embed/episode/id/17504483/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Jan 11, 2021

Ian Chan, CEO, Abpro is developing a drug which is a COVID-19 neutralizing antibody that has demonstrated strong binding affinity for COVID-19 in a Phase 2/3 global trial. Using the Diverse Immune Platform, an advanced antibody discovery platform, Abpro is drawing on years of successful work developing neutralizing…Read More


New Normal for Informing Family Members About Care Team and Patient Progress with Hope Johnson Lehigh Valley Health Network TRANSCRIPT

 Download PDF

Jan 8, 2021

Hope Johnson, Administrator Perioperative Services, Lehigh Valley Health Network has deployed the Vocera Ease app to facilitate updates for family members about patient progress in surgery.  Since they began implementing this solution in 2017, LVNH was prepared for the increased restrictions from COVID-19 on the ability…Read More


New Normal for Informing Family Members About Care Team and Patient Progress with Hope Johnson Lehigh Valley Health Network

https://html5-player.libsyn.com/embed/episode/id/17461091/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Jan 8, 2021

Hope Johnson, Administrator Perioperative Services, Lehigh Valley Health Network has deployed the Vocera Ease app to facilitate updates for family members about patient progress in surgery.  Since they began implementing this solution in 2017, LVNH was prepared for the increased restrictions from COVID-19 on the ability…Read More


Superficial Radiation Therapy Strong Alternative to Mohs Surgery for Skin Cancer with Joseph Sardano Sensus Healthcare TRANSCRIPT

 Download PDF

Jan 6, 2021

Joseph Sardano, Founder and CEO, Sensus Healthcare presents compelling data on the effectiveness of a non-surgical alternative to Mohs surgery for treating skin cancer and keloids.  Using Superficial Radiation Therapy otherwise known as photon radiotherapy, the Sensus SRT system allows for non-invasive treatments…Read More


Superficial Radiation Therapy Strong Alternative to Mohs Surgery for Skin Cancer with Joseph Sardano Sensus Healthcare

https://html5-player.libsyn.com/embed/episode/id/17421962/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Jan 6, 2021

Joseph Sardano, Founder and CEO, Sensus Healthcare presents compelling data on the effectiveness of a non-surgical alternative to Mohs surgery for treating skin cancer and keloids.  Using Superficial Radiation Therapy otherwise known as photon radiotherapy, the Sensus SRT system allows for non-invasive treatments…Read More


COVID-19 Therapy Based on AI Pharmaceutical Biotech and Ethnobotanicals with Dr. Saran Saund Oncotelic Therapeutics TRANSCRIPT

 Download PDF

Dec 24, 2020

Dr. Saran Saund, Chief Business Officer, Oncotelic Therapeutics is an immuno-oncology company dedicated to developing RNA cancer therapies for melanoma and pancreatic cancer using their nano molecular therapy platform.  Using AI they recently screened several of their own molecules and ethnobotanicals for COVID-19.  As…Read More


COVID-19 Therapy Based on AI Pharmaceutical Biotech and Ethnobotanicals with Dr. Saran Saund Oncotelic Therapeutics

https://html5-player.libsyn.com/embed/episode/id/17312321/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 23, 2020

Dr. Saran Saund, Chief Business Officer, Oncotelic Therapeutics is an immuno-oncology company dedicated to developing RNA cancer therapies for melanoma and pancreatic cancer using their nano molecular therapy platform.  Using AI they recently screened several of their own molecules and ethnobotanicals for COVID-19.  As…Read More


Masitinib Targeting and Blocking Mast Cells and Macrophages to Treat COVID-19 with Alain Moussy AB Science TRANSCRIPT

 Download PDF

Dec 23, 2020

Alain Moussy, Co-Founder and CEO, AB Science has applied their lead compound Masitinib to target mast cells and macrophage, also known when presenting with CNS as microglia, from the innate immune system to treat Lou Gehrig’s disease, multiple sclerosis, Alzheimer’s disease, tumors, and pancreatic cancer.  Now AB…Read More


Masitinib Targeting and Blocking Mast Cells and Macrophages to Treat COVID-19 with Alain Moussy AB Science

https://html5-player.libsyn.com/embed/episode/id/17298755/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 23, 2020

Alain Moussy, Co-Founder and CEO, AB Science has applied their lead compound Masitinib to target mast cells and macrophage, also known when presenting with CNS as microglia, from the innate immune system to treat Lou Gehrig’s disease, multiple sclerosis, Alzheimer’s disease, tumors, and pancreatic cancer.  Now AB…Read More


Using AI and Genetic Data in Drug Research to Treat a Rare Neurologic Peripheral Neuropathy with Dr. David Solomon Pharnext TRANSCRIPT

 Download PDF

Dec 22, 2020

Dr. David Solomon, CEO, Pharnext is deploying their innovative drug discovery platform that uses genetic data, big data and AI to determine combinations that are novel and non-obvious to find treatments for rare diseases.  With a focus on Charcot-Marie-Tooth, a rare neurologic peripheral neuropathy with no current…Read More


Using AI and Genetic Data in Drug Research to Treat a Rare Neurologic Peripheral Neuropathy with Dr. David Solomon Pharnext

https://html5-player.libsyn.com/embed/episode/id/17280071/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 22, 2020

Dr. David Solomon, CEO, Pharnext is deploying their innovative drug discovery platform that uses genetic data, big data and AI to determine combinations that are novel and non-obvious to find treatments for rare diseases.  With a focus on Charcot-Marie-Tooth, a rare neurologic peripheral neuropathy with no current…Read More


Developing Effective COVID-19 Oral Vaccine in Tablet Form with Sean Tucker Vaxart TRANSCRIPT

 Download PDF

Dec 21, 2020

Sean Tucker, Founder and Chief Scientific Officer, Vaxart is on a mission to expand the choices for a COVID-19 vaccine by producing an effective oral vaccine in tablet form which would allow for more efficient distribution and ease of administering particularly to needle-adverse people. Building on experience developing…Read More


Developing Effective COVID-19 Oral Vaccine in Tablet Form with Sean Tucker Vaxart

https://html5-player.libsyn.com/embed/episode/id/17254745/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 21, 2020

Sean Tucker, Founder and Chief Scientific Officer, Vaxart is on a mission to expand the choices for a COVID-19 vaccine by producing an effective oral vaccine in tablet form which would allow for more efficient distribution and ease of administering particularly to needle-adverse people. Building on experience developing…Read More


COVID-19 Driving Soaring Cyber Crime Attacks on Healthcare Operators with Luke Wilson Constella Intelligence TRANSCRIPT

 Download PDF

Dec 16, 2020

Luke Wilson VP Constella Intelligence talks about the digital risk protection space and the increasing attacks on healthcare networks in large part due to opportunities created for cyber criminals by COVID-19. With a lack of awareness about the need for good cyber hygiene and the explosion of new online activities,…Read More


COVID-19 Driving Soaring Cyber Crime Attacks on Healthcare Operators with Luke Wilson Constella Intelligence

https://html5-player.libsyn.com/embed/episode/id/17209907/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 16, 2020

Luke Wilson VP Constella Intelligence talks about the digital risk protection space and the increasing attacks on healthcare networks in large part due to opportunities created for cyber criminals by COVID-19. With a lack of awareness about the need for good cyber hygiene and the explosion of new online activities,…Read More


Preventing Disability from Dupuytren’s Contracture with Dr. Jim Woody 180 Life Sciences TRANSCRIPT

 Download PDF

Dec 15, 2020

Dr. Jim Woody, CEO, 180 Life Sciences is one of four world-renowned scientists that have come together to form 180 LS to focus on treating inflammation, fibrosis and pain. Jim discusses the company’s lead clinical program using anti-TNF to treat Dupuytren’s contracture, a fibrotic disease of the hand. With a goal of…Read More


Preventing Disability from Dupuytren’s Contracture with Dr. Jim Woody 180 Life Sciences

https://html5-player.libsyn.com/embed/episode/id/17205614/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 15, 2020

Dr. Jim Woody, CEO, 180 Life Sciences is one of four world-renowned scientists that have come together to form 180 LS to focus on treating inflammation, fibrosis and pain. Jim discusses the company’s lead clinical program using anti-TNF to treat Dupuytren’s contracture, a fibrotic disease of the hand. With a goal of…Read More


Treating Hypoxia and Low Oxygen with Drug Compound Trans-Sodium Crocetinate Derived from Saffron with Dr. Robert Cobuzzi Diffusion Pharmaceuticals TRANSCRIPT

 Download PDF

Dec 15, 2020

Dr. Robert Cobuzzi, CEO, Diffusion Pharmaceuticals describes the evolution of the thinking about treating hypoxia and low oxygen conditions caused by a variety of diseases and conditions.  With modified crocetin derived from the spice saffron harvested from Crocus sativus, Diffusion has come up with a compound…Read More


Treating Hypoxia and Low Oxygen with Drug Compound Trans-Sodium Crocetinate Derived from Saffron with Dr. Robert Cobuzzi Diffusion Pharmaceuticals

https://html5-player.libsyn.com/embed/episode/id/17131310/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 9, 2020

Dr. Robert Cobuzzi, CEO, Diffusion Pharmaceuticals describes the evolution of the thinking about treating hypoxia and low oxygen conditions caused by a variety of diseases and conditions.  With modified crocetin derived from the spice saffron harvested from Crocus sativus, Diffusion has come up with a compound…Read More


Fighting Opioid Overdoses with Drug Warning Labels and Available Naloxone with Dr. Joan Kapusnik-Uner First Databank TRANSCRIPT

 Download PDF

Dec 8, 2020

Dr. Joan Kapusnik-Uner, Vice President Clinical Content, First Databank is an expert on drug labeling and is concerned about opioid misuse and overdoses. She talks about the significance of the AMA recommendation that having an opioid reversal medication called Naloxone be available for all patients prescribed opioid…Read More


Fighting Opioid Overdoses with Drug Warning Labels and Available Naloxone with Dr. Joan Kapusnik-Uner First Databank

https://html5-player.libsyn.com/embed/episode/id/17102852/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 8, 2020

Dr. Joan Kapusnik-Uner, Vice President Clinical Content, First Databank is an expert on drug labeling and is concerned about opioid misuse and overdoses. She talks about the significance of the AMA recommendation that having an opioid reversal medication called Naloxone be available for all patients prescribed opioid…Read More


Accurately Predicting Nature of Cardiac Toxicity of a Drug With Bob Hutchens StemBioSys TRANSCRIPT

 Download PDF

Dec 7, 2020

Bob Hutchens, President and CEO, StemBioSys talks about their work building a set of tools that are being used around the world by pharmaceutical companies in early-stage drug discovery. CELLvo and CELLvo Matrix Plus are technologies that grow cells from amniotic fluid from natural births and reverse-engineer them into…Read More


Accurately Predicting Nature of Cardiac Toxicity of a Drug With Bob Hutchens StemBioSys

https://html5-player.libsyn.com/embed/episode/id/17086556/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 7, 2020

Bob Hutchens, President and CEO, StemBioSys talks about their work building a set of tools that are being used around the world by pharmaceutical companies in early-stage drug discovery. CELLvo and CELLvo Matrix Plus are technologies that grow cells from amniotic fluid from natural births and reverse-engineer them into…Read More


Initiating End-of-Life Palliative Care Conversations with Patients with Dr. Caroline DeFilippo CareMount Medical TRANSCRIPT

 Download PDF

Dec 2, 2020

Dr. Caroline DeFilippo, practicing internist and associate medical director, CareMount Medical addresses the need for healthcare professionals to have end-of-life conversations with patients sooner than later.  With tips for practitioners, Caroline addresses the need to see the whole patient not just the body parts and…Read More


Initiating End-of-Life Palliative Care Conversations with Patients with Dr. Caroline DeFilippo CareMount Medical

https://html5-player.libsyn.com/embed/episode/id/17024144/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 2, 2020

Dr. Caroline DeFilippo, practicing internist and associate medical director, CareMount Medical addresses the need for healthcare professionals to have end-of-life conversations with patients sooner than later.  With tips for practitioners, Caroline addresses the need to see the whole patient not just the body parts and…Read More


Moving Pharmacies and Healthcare Providers into the Digital World With Cathy Kuhn Updox TRANSCRIPT

 Download PDF

Dec 1, 2020

Cathy Kuhn PharmD, Director of Strategy Consulting, Updox has a deep understanding of the communications needs of pharmacists, healthcare providers, and patients and what issues can be addressed by moving from paper to digital. Updox is creating a secure virtual care online environment to encourage the reduction of…Read More


Moving Pharmacies and Healthcare Providers into the Digital World With Cathy Kuhn Updox

https://html5-player.libsyn.com/embed/episode/id/17009066/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Dec 1, 2020

Cathy Kuhn PharmD, Director of Strategy Consulting, Updox has a deep understanding of the communications needs of pharmacists, healthcare providers, and patients and what issues can be addressed by moving from paper to digital. Updox is creating a secure virtual care online environment to encourage the reduction of…Read More


Intratumoral Therapy the Abscopal Effect and Harnessing Cytokine IL-12 in the Treatment Melanoma with Daniel O’Connor OncoSec Immunotherapies TRANSCRIPT

 Download PDF

Nov 30, 2020

Daniel O’Connor, CEO, OncoSec Immunotherapies describes their intratumoral therapy where the drug is injected directly into tumors instead of a systemic treatment thereby avoiding toxicities while also seeing tumors shrink that are not being directly treated, the abscopal effect. OncoSec is using electroporation to…Read More


Intratumoral Therapy the Abscopal Effect and Harnessing Cytokine IL-12 in the Treatment Melanoma with Daniel O’Connor OncoSec Immunotherapies

https://html5-player.libsyn.com/embed/episode/id/17001947/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 30, 2020

Daniel O’Connor, CEO, OncoSec Immunotherapies describes their intratumoral therapy where the drug is injected directly into tumors instead of a systemic treatment thereby avoiding toxicities while also seeing tumors shrink that are not being directly treated, the abscopal effect. OncoSec is using electroporation to…Read More


Genomic Information of Breast Cancer Tumors Drives Precision Medicine Treatment With Dr. Bill Audeh Agendia TRANSCRIPT

 Download PDF

Nov 25, 2020

Dr. Bill Audeh, medical oncologist and Chief Medical Officer, Agendia left his 30 year career of medical practice treating breast cancer patients to join Agendia because of the exciting opportunities for precision medicine to treat breast cancer. With technology that allows for genomic testing of the cancer tumors, it…Read More


Genomic Information of Breast Cancer Tumors Drives Precision Medicine Treatment With Dr. Bill Audeh Agendia

https://html5-player.libsyn.com/embed/episode/id/16940369/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 25, 2020

Dr. Bill Audeh, medical oncologist and Chief Medical Officer, Agendia left his 30 year career of medical practice treating breast cancer patients to join Agendia because of the exciting opportunities for precision medicine to treat breast cancer. With technology that allows for genomic testing of the cancer tumors, it…Read More


Addressing the Impact of Stressors on the Body with Catherine Rivier Sentia Medical Sciences TRANSCRIPT

 Download PDF

Nov 24, 2020

Catherine Rivier, Co-Founder Sentia Medical is an expert on stressors and the impact physical, emotional, and infectious or inflammatory stressors have on the brain and the body. Her research along with her late husband at the Salk Institute in San Diego led to the discovery of the main stress hormone CRF. Sentia is now…Read More


Addressing the Impact of Stressors on the Body with Catherine Rivier Sentia Medical Sciences

https://html5-player.libsyn.com/embed/episode/id/16927556/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 24, 2020

Catherine Rivier, Co-Founder Sentia Medical is an expert on stressors and the impact physical, emotional, and infectious or inflammatory stressors have on the brain and the body. Her research along with her late husband at the Salk Institute in San Diego led to the discovery of the main stress hormone CRF. Sentia is now…Read More


Remote Patient Monitoring Advances Public Health in the Age of COVID-19 with Tara Davis Rimidi TRANSCRIPT

 Download PDF

Nov 23, 2020

Tara Davis Director of Community Health, Rimidi has deep expertise in the development and evaluation of public health prevention programs. She explains why it has become exponentially more difficult to ensure minorities, low income, rural and patients living with chronic conditions to receive even basic care they need…Read More


Remote Patient Monitoring Advances Public Health in the Age of COVID-19 with Tara Davis Rimidi

https://html5-player.libsyn.com/embed/episode/id/16909139/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 23, 2020

Tara Davis Director of Community Health, Rimidi has deep expertise in the development and evaluation of public health prevention programs. She explains why it has become exponentially more difficult to ensure minorities, low income, rural and patients living with chronic conditions to receive even basic care they need…Read More


Preventing Lymphedema from Becoming a Chronic Condition with Dr. Sheri Prentiss LIVE Today Foundation and Rick Carreon Impedimed TRANSCRIPT

 Download PDF

Nov 18, 2020

Dr. Sheri Prentiss, physician and founder LIVE Today Foundation and Rick Carreon, CEO and President, Impedimed are excited about their partnership to raise awareness about early diagnosis and treatment of lymphedema to prevent it from becoming a chronic condition. The Impedimed device conducts a simple and fast test to…Read More


Preventing Lymphedema from Becoming a Chronic Condition with Dr. Sheri Prentiss LIVE Today Foundation and Rick Carreon Impedimed

https://html5-player.libsyn.com/embed/episode/id/16851077/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 18, 2020

Dr. Sheri Prentiss, physician and founder LIVE Today Foundation and Rick Carreon, CEO and President, Impedimed are excited about their partnership to raise awareness about early diagnosis and treatment of lymphedema to prevent it from becoming a chronic condition. The Impedimed device conducts a simple and fast test to…Read More


Report on HealthTech Innovation Days Paris 2020 with Christian Pierret Former French Minister of Industry TRANSCRIPT

 Download PDF

Nov 16, 2020

Christian Pierret, former French Minister of Industry and member of the board of different biotech and MedTech European companies gives a report on the recent in-person and virtual HealthTech Innovation Days held in Paris in October 2020.  Now in it’s second year, HTID attracted international participants, global…Read More


Report on HealthTech Innovation Days Paris 2020 with Christian Pierret Former French Minister of Industry

https://html5-player.libsyn.com/embed/episode/id/16810469/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 16, 2020

Christian Pierret, former French Minister of Industry and member of the board of different biotech and MedTech European companies gives a report on the recent in-person and virtual HealthTech Innovation Days held in Paris in October 2020.  Now in it’s second year, HTID attracted international participants, global…Read More


Combating Burnout with Gratitude Acceptance Intention and Non-Judgement with Dr. Greg Hammer Stanford Medical Center and Author TRANSCRIPT

 Download PDF

Nov 11, 2020

Greg Hammer MD is a pediatric intensive care physician, pediatric anesthesiologist, Stanford University Medical Center professor, student of Buddhism and author of GAIN Without Pain: The Happiness Handbook for Health Care Professionals.  Greg talks about the impact of chronic stress and the wide variety of stressors…Read More


Combating Burnout with Gratitude Acceptance Intention and Non-Judgement with Dr. Greg Hammer Stanford Medical Center and Author

https://html5-player.libsyn.com/embed/episode/id/16757372/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 11, 2020

Greg Hammer MD is a pediatric intensive care physician, pediatric anesthesiologist, Stanford University Medical Center professor, student of Buddhism and author of GAIN Without Pain: The Happiness Handbook for Health Care Professionals.  Greg talks about the impact of chronic stress and the wide variety of stressors…Read More


Real Time Updates Connect Care Teams Hospitalized Patients and Family with Dr. Kevin de la Roza Vocera Ease TRANSCRIPT

 Download PDF

Nov 10, 2020

Dr. Kevin de la Roza is a pediatric cardiac anesthesiologist and entrepreneur who has developed the Vocera Ease app that allows for care team members and family to stay in touch during the hospitalization of a patient.  Especially in the time of COVID-19 and changes in access to the waiting room, this app is a valuable…Read More


Real Time Updates Connect Care Teams Hospitalized Patients and Family with Dr. Kevin de la Roza Vocera Ease

https://html5-player.libsyn.com/embed/episode/id/16743302/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 10, 2020

Dr. Kevin de la Roza is a pediatric cardiac anesthesiologist and entrepreneur who has developed the Vocera Ease app that allows for care team members and family to stay in touch during the hospitalization of a patient.  Especially in the time of COVID-19 and changes in access to the waiting room, this app is a valuable…Read More


Driving Drug Price Transparency for Doctors and Patients with Cam Deemer DrFirst TRANSCRIPT

 Download PDF

Nov 9, 2020

Cam Deemer, President, DrFirst shines light on the world of drug pricing and the lack of cost transparency for both doctors and patients. DrFirst is working with Prime Therapeutics, a PBM primarily focused on BlueCross and BlueShield, to integrate their data and provide drug price transparency to now 90% of covered…Read More


Driving Drug Price Transparency for Doctors and Patients with Cam Deemer DrFirst

https://html5-player.libsyn.com/embed/episode/id/16728497/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 9, 2020

Cam Deemer, President, DrFirst shines light on the world of drug pricing and the lack of cost transparency for both doctors and patients. DrFirst is working with Prime Therapeutics, a PBM primarily focused on BlueCross and BlueShield, to integrate their data and provide drug price transparency to now 90% of covered…Read More


Widowmaker Heart Attack Leads to Inspiration for App to Improve Medical Supply Chain With Matt Shields Healthcare Advocate TRANSCRIPT

 Download PDF

Nov 4, 2020

Matt Shields was a healthy, competitive athlete and designer of the world’s largest telescope when he had a widowmaker heart attack. Saved by the implantation of an Abbott XIENCE stent, Matt was able resume his active life in Australia. During his convalescence, Matt realized that his knowledge about component tracking…Read More


Widowmaker Heart Attack Leads to Inspiration for App to Improve Medical Supply Chain With Matt Shields Healthcare Advocate

https://html5-player.libsyn.com/embed/episode/id/16684814/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 4, 2020

Matt Shields was a healthy, competitive athlete and designer of the world’s largest telescope when he had a widowmaker heart attack. Saved by the implantation of an Abbott XIENCE stent, Matt was able resume his active life in Australia. During his convalescence, Matt realized that his knowledge about component tracking…Read More


Improving Performance of Surgeons with Game Changing Light Field Imaging with Gabe Jones Proprio Vision TRANSCRIPT

 Download PDF

Nov 3, 2020

Gabe jones, CEO and Co-Founder Proprio Vision is working with a diverse team to bring a robotic surgical navigation system using mixed reality, AI and immersive tech to the medical field to help make super surgeons.  Proprio’s technology exponentially improves instrumental accuracy, surgical navigation by creating 3D…Read More


Improving Performance of Surgeons with Game Changing Light Field Imaging with Gabe Jones Proprio Vision

https://html5-player.libsyn.com/embed/episode/id/16658201/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 3, 2020

Gabe jones, CEO and Co-Founder Proprio Vision is working with a diverse team to bring a robotic surgical navigation system using mixed reality, AI and immersive tech to the medical field to help make super surgeons.  Proprio’s technology exponentially improves instrumental accuracy, surgical navigation by creating 3D…Read More


Using Laser to Fight Cytokine Storm in COVID-19 Patients With Dr. Scott Sigman OrthoLazer Centers TRANSCRIPT

 Download PDF

Nov 2, 2020

Dr. Scott Sigman, orthopedic surgeon and co-founder OrthoLazer Centers has learned how effective the laser can be from his work on acute injuries, chronic inflammatory conditions and around the time of surgery.  As a result, he decided to pursue the idea that laser could be used to treat the cytokine storm in patients…Read More


Using Laser to Fight Cytokine Storm in COVID-19 Patients With Dr. Scott Sigman OrthoLazer Centers

https://html5-player.libsyn.com/embed/episode/id/16629719/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Nov 2, 2020

Dr. Scott Sigman, orthopedic surgeon and co-founder OrthoLazer Centers has learned how effective the laser can be from his work on acute injuries, chronic inflammatory conditions and around the time of surgery.  As a result, he decided to pursue the idea that laser could be used to treat the cytokine storm in patients…Read More


Optimizing Pharmacy Benefits for Small Employers with Mark Campbell RxBenefits TRANSCRIPT

 Download PDF

Oct 28, 2020

Mark Campbell, Vice President, Clinical Solutions RxBenefits on their technology-enabled prescription benefits services being offered to self-funded employer groups who are managing their own benefits. COVID-19 has driven changes in enrollment and demand for services as well changing the number of prescriptions and…Read More


Optimizing Pharmacy Benefits for Small Employers with Mark Campbell RxBenefits

https://html5-player.libsyn.com/embed/episode/id/16539509/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 28, 2020

Mark Campbell, Vice President, Clinical Solutions RxBenefits on their technology-enabled prescription benefits services being offered to self-funded employer groups who are managing their own benefits. COVID-19 has driven changes in enrollment and demand for services as well changing the number of prescriptions and…Read More


Finding Trusted Resources for Treating Addiction with Dr. Nishi Rawat Appriss Health and OpenBeds TRANSCRIPT

 Download PDF

Oct 27, 2020

Dr. Nishi Rawat, Senior Vice President, Appriss Health and Co-Founder OpenBeds shines a light on the challenges of finding appropriate substance abuse disorder and mental health treatment especially in light of the additional challenges from COVID-19. Instead of a clinician facing network, development of a consumer…Read More


Finding Trusted Resources for Treating Addiction with Dr. Nishi Rawat Appriss Health and OpenBeds

https://html5-player.libsyn.com/embed/episode/id/16532507/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 27, 2020

Dr. Nishi Rawat, Senior Vice President, Appriss Health and Co-Founder OpenBeds shines a light on the challenges of finding appropriate substance abuse disorder and mental health treatment especially in light of the additional challenges from COVID-19. Instead of a clinician facing network, development of a consumer…Read More


Novel Cancer Therapeutic Targets and Inhibits Nuclear Beta-Catenin in Desmoid Tumor Study with Rahul Aras Iterion Therapeutics TRANSCRIPT

 Download PDF

Oct 26, 2020

Rahul Aras, CEO, Iterion Therapeutics, describes their lead product Tegavivint, a potent selective inhibitor of nuclear beta-catenin, a high-value oncology target because of its role in cell proliferation, differentiation, immune evasion and other aspects of cancer development. An early clinical study in patients with…Read More


Novel Cancer Therapeutic Targets and Inhibits Nuclear Beta-Catenin in Desmoid Tumor Study with Rahul Aras Iterion Therapeutics

https://html5-player.libsyn.com/embed/episode/id/16532042/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 26, 2020

Rahul Aras, CEO, Iterion Therapeutics, describes their lead product Tegavivint, a potent selective inhibitor of nuclear beta-catenin, a high-value oncology target because of its role in cell proliferation, differentiation, immune evasion and other aspects of cancer development. An early clinical study in patients with…Read More


Building Strong Relationships for Preventative and Ongoing Primary Care with Ryan McQuaid PlushCare TRANSCRIPT

 Download PDF

Oct 22, 2020

Ryan McQuaid, CEO and Co-Founder, PlushCare describes the digital longitudinal primary care platform they have developed to promote strong relationships between doctors and patients. With an eye to moving telehealth to the next level, PlushCare is focusing on improving healthcare intelligence, preventative actions and…Read More


Building Strong Relationships for Preventative and Ongoing Primary Care with Ryan McQuaid PlushCare

https://html5-player.libsyn.com/embed/episode/id/16493420/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 22, 2020

Ryan McQuaid, CEO and Co-Founder, PlushCare describes the digital longitudinal primary care platform they have developed to promote strong relationships between doctors and patients. With an eye to moving telehealth to the next level, PlushCare is focusing on improving healthcare intelligence, preventative actions and…Read More


Using Gene Therapy to Fight Blindness with Bernard Gilly GenSight Biologics TRANSCRIPT

 Download PDF

Oct 21, 2020

Bernard Gilly PhD, CEO and Co-Founder, GenSight Biologics talks about the innovative gene therapy treatments GenSight is developing to fight blinding diseases. Bernard sheds light on treating Leber Hereditary Optic Neuropathy (LHON), a mitochondrial rare disease as well as retinitis pigmentosa (RP). Their goal is to…Read More


Using Gene Therapy to Fight Blindness with Bernard Gilly GenSight Biologics

https://html5-player.libsyn.com/embed/episode/id/16483454/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 21, 2020

Bernard Gilly PhD, CEO and Co-Founder, GenSight Biologics talks about the innovative gene therapy treatments GenSight is developing to fight blinding diseases. Bernard sheds light on treating Leber Hereditary Optic Neuropathy (LHON), a mitochondrial rare disease as well as retinitis pigmentosa (RP). Their goal is to…Read More


Needle Free Injection Technology Helps Overcome Needle Phobia with Scott McFarland IntegriMedical TRANSCRIPT

 Download PDF

Oct 20, 2020

Scott McFarland, CEO, IntegriMedical has taken on the challenge of needle phobia and safe and secure disposal of sharp objects in clinics and in the field.  Needle free technology is allowing healthcare professionals to quickly administer vaccinations with a greener approach allowing regular biohazard disposal. Working…Read More


Needle Free Injection Technology Helps Overcome Needle Phobia with Scott McFarland IntegriMedical

https://html5-player.libsyn.com/embed/episode/id/16465388/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 20, 2020

Scott McFarland, CEO, IntegriMedical has taken on the challenge of needle phobia and safe and secure disposal of sharp objects in clinics and in the field.  Needle-free technology is allowing healthcare professionals to quickly administer vaccinations with a greener approach allowing regular biohazard disposal. Working…Read More


End of Life Care in the Time of COVID-19 with Melvie Berkery St. Marie’s Hospice TRANSCRIPT

 Download PDF

Oct 19, 2020

Melvie Berkery, Executive Director, St. Marie’s Hospice in Detroit talks about the complexities and issues surrounding End of Life Care particularly when healthcare has been upended due to COVID-19.  With a mission to help patients and family members make this transition, Melvie explains their philosophy about providing…Read More


End of Life Care in the Time of COVID-19 with Melvie Berkery St. Marie’s Hospice

https://html5-player.libsyn.com/embed/episode/id/16441043/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 19, 2020

Melvie Berkery, Executive Director, St. Marie’s Hospice in Detroit talks about the complexities and issues surrounding End of Life Care particularly when healthcare has been upended due to COVID-19.  With a mission to help patients and family members make this transition, Melvie explains their philosophy about providing…Read More


Acromegaly Community Educates and Improves Lives with Jill Sisco Patient Advocate TRANSCRIPT

 Download PDF

Oct 14, 2020

Jill Sisco, President, Acromegaly Community talks about her experience with acromegaly beginning in her early twenties. She reveals how difficult it is to diagnose this condition, available therapies, and advancements in turning injectable medications into oral treatments. As a patient advocate for those who suffer from…Read More


Acromegaly Community Educates and Improves Lives with Jill Sisco Patient Advocate

https://html5-player.libsyn.com/embed/episode/id/16408478/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 14, 2020

Jill Sisco, President, Acromegaly Community talks about her experience with acromegaly beginning in her early twenties. She reveals how difficult it is to diagnose this condition, available therapies, and advancements in turning injectable medications into oral treatments. As a patient advocate for those who suffer from…Read More


Raising Awareness of Childhood Cancers Saves Lives with Dr. John Poothullil TRANSCRIPT

 Download PDF

Oct 13, 2020

Dr. John Poothullil, is an expert on diabetes and cancer as well as an author.  He talks about his newest book When Your Child Has Cancer and what we have learned about the causes and possible treatments for cancers that strike children.  With an eye to improving the immune system of the child, Dr. John reminds us that…Read More


Raising Awareness of Childhood Cancers Saves Lives with Dr. John Poothullil

https://html5-player.libsyn.com/embed/episode/id/16389248/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 13, 2020

Dr. John Poothullil, is an expert on diabetes and cancer as well as an author.  He talks about his newest book When Your Child Has Cancer and what we have learned about the causes and possible treatments for cancers that strike children.  With an eye to improving the immune system of the child, Dr. John reminds us that…Read More


Medical Simulators Drive Innovation in Healthcare Education with Jim Archetto Gaumard Scientific TRANSCRIPT

 Download PDF

Oct 7, 2020

Jim Archetto, Vice President Gaumard Scientific describes the range of simulators available to train healthcare professionals in routine medical procedures as well as rarely seen scenarios.  Simulation becomes vital in the education process during these days of COVID-19. Life-like patient simulators are being used to…Read More


Medical Simulators Drive Innovation in Healthcare Education with Jim Archetto Gaumard Scientific

https://html5-player.libsyn.com/embed/episode/id/16314671/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 7, 2020

Jim Archetto, Vice President Gaumard Scientific describes the range of simulators available to train healthcare professionals in routine medical procedures as well as rarely seen scenarios.  Simulation becomes vital in the education process during these days of COVID-19. Life-like patient simulators are being used to…Read More


Novel Dual Action Treatment of Acute Cardiovascular Syndrome with Craig Fraser Windtree Therapeutics TRANSCRIPT

 Download PDF

Oct 5, 2020

Craig Fraser, CEO and President, Windtree Therapeutics talks about acute heart failure, the number one reason for hospitalization in people over 65 and the fact that there has been little innovation in trying to improve cardiac function. Developing a novel dual action drug called istaroxime, Windtree is addressing both…Read More


Novel Dual Action Treatment of Acute Cardiovascular Syndrome with Craig Fraser Windtree Therapeutics

https://html5-player.libsyn.com/embed/episode/id/16260089/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Oct 5, 2020

Craig Fraser, CEO and President, Windtree Therapeutics talks about acute heart failure, the number one reason for hospitalization in people over 65 and the fact that there has been little innovation in trying to improve cardiac function. Developing a novel dual action drug called istaroxime, Windtree is addressing both…Read More


HealthTech Innovation Days Expanding Reach with Virtual and In-Person Events with Maryvonne Hiance and Christian Policard HealthTech For Care TRANSCRIPT

 Download PDF

Sep 30, 2020

Maryvonne Hiance, President, and Christian Policard, Board Member, HealthTech For Care talk about the upcoming HealthTech Innovation Days taking place virtually as well as in-person in Paris. Attendance is expected to dramatically increase over the participation at the first event held last year, in part driven by the…Read More


HealthTech Innovation Days Expanding Reach with Virtual and In-Person Events with Maryvonne Hiance and Christian Policard HealthTech For Care

https://html5-player.libsyn.com/embed/episode/id/16222370/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 30, 2020

Maryvonne Hiance, President, and Christian Policard, Board Member, HealthTech For Care talk about the upcoming HealthTech Innovation Days taking place virtually as well as in-person in Paris. Attendance is expected to dramatically increase over the participation at the first event held last year, in part driven by the…Read More


Applying Advances in Cell Cycle Biology to Inhibit CDK2 and CDK9 to Overcome Resistance to Anti-Cancer Therapies with Spiro Rombotis Cyclacel Pharmaceuticals TRANSCRIPT

 Download PDF

Sep 30, 2020

Spiro Rombotis, President and Chief Executive Officer, Cyclacel Pharmaceuticals dives into the insights about cell cycle check point control that have led to the development of fadraciclib, a potent orally and intravenously available inhibitor of CDK2 and CDK9 cancer pathways. Drawing on the vision of the company’s…Read More


Applying Advances in Cell Cycle Biology to Inhibit CDK2 and CDK9 to Overcome Resistance to Anti-Cancer Therapies with Spiro Rombotis Cyclacel Pharmaceuticals

https://html5-player.libsyn.com/embed/episode/id/16208711/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 30, 2020

Spiro Rombotis, President and Chief Executive Officer, Cyclacel Pharmaceuticals dives into the insights about cell cycle check point control that have led to the development of fadraciclib, a potent orally and intravenously available inhibitor of CDK2 and CDK9 cancer pathways. Drawing on the vision of the company’s…Read More


Refractory Angina Symptoms Significantly Improved by Medical Device with Fred Colen Neovasc TRANSCRIPT

 Download PDF

Sep 23, 2020

Fred Colen, Chief Executive Officer, Neovasc sheds light on the four classes of angina and how the quality of life deteriorates for patients suffering from symptoms. Looking for the fundamental reason for the chronic condition of refractory angina has led Neovasc to address the small blood vessels inside the myocardium,…Read More


Refractory Angina Symptoms Significantly Improved by Medical Device with Fred Colen Neovasc

https://html5-player.libsyn.com/embed/episode/id/16129334/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 23, 2020

Fred Colen, Chief Executive Officer, Neovasc sheds light on the four classes of angina and how the quality of life deteriorates for patients suffering from symptoms. Looking for the fundamental reason for the chronic condition of refractory angina has led Neovasc to address the small blood vessels inside the myocardium,…Read More


Injecting New Retina Cells into the Eye to Treat Age-Related Macular Degeneration with Brian Culley Lineage Cell Therapeutics TRANSCRIPT

 Download PDF

Sep 22, 2020

Brian Culley, CEO, Lineage Cell Therapeutics talks about the risk we all face from developing age-related macular degeneration – both wet AMD and dry AMD. While there are treatments for wet AMD, currently there is no interventional approved treatment for dry AMD. Lineage is developing a ground-breaking treatment for dry…Read More


Injecting New Retina Cells into the Eye to Treat Age-Related Macular Degeneration with Brian Culley Lineage Cell Therapeutics

https://html5-player.libsyn.com/embed/episode/id/16115525/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 22, 2020

Brian Culley, CEO, Lineage Cell Therapeutics talks about the risk we all face from developing age-related macular degeneration – both wet AMD and dry AMD. While there are treatments for wet AMD, currently there is no interventional approved treatment for dry AMD. Lineage is developing a ground-breaking treatment for dry…Read More


Driving Innovation in Adherence and Personalized Medication Management with Omri Shor Medisafe TRANSCRIPT

 Download PDF

Sep 21, 2020

Omri Shor, CEO and co-founder, Medisafe talks about the different aspects of medication adherence and challenges faced by patients trying to maintain their drug therapy schedules. With an eye towards personalized medicine, Medisafe strives to build bridges and integrate healthcare services for patients to allow them to…Read More


Driving Innovation in Adherence and Personalized Medication Management with Omri Shor Medisafe

https://html5-player.libsyn.com/embed/episode/id/16085081/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 21, 2020

Omri Shor, CEO and co-founder, Medisafe talks about the different aspects of medication adherence and challenges faced by patients trying to maintain their drug therapy schedules. With an eye towards personalized medicine, Medisafe strives to build bridges and integrate healthcare services for patients to allow them to…Read More


Turning Injectable Drugs into Oral Therapy with Raj Kannan Chiasma TRANSCRIPT

 Download PDF

Sep 17, 2020

Raj Kannan, CEO, Chiasma is focused on bringing to market oral formulations to patients that face significant challenges with their existing injectable therapies.  Targeting those suffering from the rare disease acromegaly, recent approval of MYCAPSSA brings the first and only oral somatostatin analog to a predominantly…Read More


Turning Injectable Drugs into Oral Therapy with Raj Kannan Chiasma

https://html5-player.libsyn.com/embed/episode/id/16040468/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 17, 2020

Raj Kannan, CEO, Chiasma is focused on bringing to market oral formulations to patients that face significant challenges with their existing injectable therapies.  Targeting those suffering from the rare disease acromegaly, recent approval of MYCAPSSA brings the first and only oral somatostatin analog to a predominantly…Read More


Addressing Epidemic of Concussions and Advances in Treating Traumatic Brain Injuries with Marcy Rogers SpineMark TRANSCRIPT

 Download PDF

Sep 14, 2020

Marcy Rogers, CEO and Founder, SpineMark is targeting traumatic brain injuries suffered by athletes, kids, seniors and those getting a concussion from an accident or engagement in a military action. Marcy points out this problem is often ignored and currently there are no treatments for concussions except rest. …Read More


Addressing Epidemic of Concussions and Advances in Treating Traumatic Brain Injuries with Marcy Rogers SpineMark

https://html5-player.libsyn.com/embed/episode/id/15980549/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 14, 2020

Marcy Rogers, CEO and Founder, SpineMark is targeting traumatic brain injuries suffered by athletes, kids, seniors and those getting a concussion from an accident or engagement in a military action. Marcy points out this problem is often ignored and currently there are no treatments for concussions except rest. …Read More


Diagnosing and Managing Impact of Concussions With Harrison Brown HeadCheck Health TRANSCRIPT

 Download PDF

Sep 9, 2020

Harrison Brown Co-Founder and CEO, HeadCheck Health wants to make it easy to better identify, diagnose, manage and clear people who have suffered from a concussion to allow them to resume their regular activities.  While sports teams and other organizations have developed a concussion protocol for managing those who…Read More


Diagnosing and Managing Impact of Concussions With Harrison Brown HeadCheck Health

https://html5-player.libsyn.com/embed/episode/id/15948320/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 9, 2020

Harrison Brown Co-Founder and CEO, HeadCheck Health wants to make it easy to better identify, diagnose, manage and clear people who have suffered from a concussion to allow them to resume their regular activities.  While sports teams and other organizations have developed a concussion protocol for managing those who…Read More


Using Artificial Intelligence at Point of Care with Dr. Jay Anders Medicomp Systems TRANSCRIPT

 Download PDF

Sep 8, 2020

Dr. Jay Anders, Chief Medical Officer, Medicomp Systems addresses how COVID-19 has revealed weaknesses in the US healthcare system and the need to address the challenges from the lack of interoperability and accurate point-of-care information. With an eye to the use of artificial intelligence and remembering that the…Read More


Using Artificial Intelligence at Point of Care with Dr. Jay Anders Medicomp Systems

https://html5-player.libsyn.com/embed/episode/id/15900827/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 8, 2020

Dr. Jay Anders, Chief Medical Officer, Medicomp Systems addresses how COVID-19 has revealed weaknesses in the US healthcare system and the need to address the challenges from the lack of interoperability and accurate point-of-care information. With an eye to the use of artificial intelligence and remembering that the…Read More


Leveraging Childhood Vaccination Recall to Fight Cancer with Chris Bradley Loki Therapeutics TRANSCRIPT

 Download PDF

Sep 2, 2020

Chris Bradley, CEO and Co-Founder, Loki Therapeutics talks about a new generation of cancer immune therapy that takes advantage of the body’s ability to fight antigens it already recognizes from a previous childhood vaccination. The delivery mechanism uses an attenuated bacteria listeria monocytogenes that colonizes the…Read More


Leveraging Childhood Vaccination Recall to Fight Cancer with Chris Bradley Loki Therapeutics

https://html5-player.libsyn.com/embed/episode/id/15857486/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 2, 2020

Chris Bradley, CEO and Co-Founder, Loki Therapeutics talks about a new generation of cancer immune therapy that takes advantage of the body’s ability to fight antigens it already recognizes from a previous childhood vaccination. The delivery mechanism uses an attenuated bacteria listeria monocytogenes that colonizes the…Read More


Celebrating World Patient Safety Day with Dr. David Mayer Patient Safety Movement Foundation TRANSCRIPT

 Download PDF

Sep 1, 2020

Dr. David Mayer, CEO, Patient Safety Movement Foundation is an advocate for awareness of preventable medical harm in healthcare and steps that need to be taken to keep both patients and healthcare workers safe. With a focus on transparency to allow patients to make informed decisions, Dave emphasizes the need to address…Read More


Celebrating World Patient Safety Day with Dr. David Mayer Patient Safety Movement Foundation

https://html5-player.libsyn.com/embed/episode/id/15841523/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Sep 1, 2020

Dr. David Mayer, CEO, Patient Safety Movement Foundation is an advocate for awareness of preventable medical harm in healthcare and steps that need to be taken to keep both patients and healthcare workers safe. With a focus on transparency to allow patients to make informed decisions, Dave emphasizes the need to address…Read More


Developing Immunotherapeutic Technologies to Combat Infectious Disease and Cancer With Dr. Tim Rodell Aethlon Medical TRANSCRIPT

 Download PDF

Aug 31, 2020

Dr. Tim Rodell, Chief Executive Officer, Aethlon Medical brings us up to speed on the work at Aethlon in developing immunotherapeutic technologies using their Hemopurifier to clear a virus as well as exosomes in patients with cancer as blood flows through the nanofibers of the Hemopurifier cartridge. With more recent…Read More


Developing Immunotherapeutic Technologies to Combat Infectious Disease and Cancer With Dr. Tim Rodell Aethlon Medical

https://html5-player.libsyn.com/embed/episode/id/15824921/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 31, 2020

Dr. Tim Rodell, Chief Executive Officer, Aethlon Medical brings us up to speed on the work at Aethlon in developing immunotherapeutic technologies using their Hemopurifier to clear a virus as well as exosomes in patients with cancer as blood flows through the nanofibers of the Hemopurifier cartridge. With more recent…Read More


Driving Biomedical Innovation and Partnerships in Interventional Cardiology with David Hochman Orchestra BioMed TRANSCRIPT

 Download PDF

Aug 26, 2020

David Hochman, CEO and Founder, Orchestra BioMed is bringing a partnership model to promote healthcare innovation particularly in the field of drug eluting balloons. Their lead product Virtue Sirolimus Angiofusion Balloon (SAB) is delivering an established therapeutic agent in interventional cardiology during balloon…Read More


Driving Biomedical Innovation and Partnerships in Interventional Cardiology with David Hochman Orchestra BioMed

https://html5-player.libsyn.com/embed/episode/id/15755906/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 26, 2020

David Hochman, CEO and Founder, Orchestra BioMed is bringing a partnership model to promote healthcare innovation particularly in the field of drug eluting balloons. Their lead product Virtue Sirolimus Angiofusion Balloon (SAB) is delivering an established therapeutic agent in interventional cardiology during balloon…Read More


Addressing Genetic Mutation that Leads to Rare Disease of the Immune System with Paula Ragan X4 Pharmaceuticals TRANSCRIPT

 Download PDF

Aug 25, 2020

Paula Ragan, CEO and President, X4 Pharmamceuticals is developing innovative approaches to treat patients suffering from rare diseases with an initial focus on WHIM syndrome, a rare disease of the immune system that has a basis in a genetic mutation. X4 is also focused on a rare form of lymphoma called Waldenstrom…Read More


Addressing Genetic Mutation that Leads to Rare Disease of the Immune System with Paula Ragan X4 Pharmaceuticals

https://html5-player.libsyn.com/embed/episode/id/15738857/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 25, 2020

Paula Ragan, CEO and President, X4 Pharmaceuticals is developing innovative approaches to treat patients suffering from rare diseases with an initial focus on WHIM syndrome, a rare disease of the immune system that has a basis in a genetic mutation. X4 is also focused on a rare form of lymphoma called Waldenstrom…Read More


From Treatment of Cancer to Developing Novel Therapeutics for COVID-19 with Amit Kumar Anixa Biosciences TRANSCRIPT

 Download PDF

Aug 19, 2020

Amit Kumar is President and CEO, Anixa Biosciences, a Silicon Valley based biopharmaceutical company focused on the prevention and treatment of cancer and now developing novel treatments for COVID-19. Using high performance computing, molecular modeling and virtual testing techniques, Anixa is focusing exclusively on…Read More


From Treatment of Cancer to Developing Novel Therapeutics for COVID-19 with Amit Kumar Anixa Biosciences

https://html5-player.libsyn.com/embed/episode/id/15666134/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 19, 2020

Amit Kumar is President and CEO, Anixa Biosciences, a Silicon Valley based biopharmaceutical company focused on the prevention and treatment of cancer and now developing novel treatments for COVID-19. Using high performance computing, molecular modeling and virtual testing techniques, Anixa is focusing exclusively on…Read More


Extending Life of Human Pancreatic Slices Provides Window into Cell Regeneration in the Pancreas with Dr. Juan Dominguez-Bendala Diabetes Research Institute TRANSCRIPT

 Download PDF

Aug 18, 2020

Dr. Juan Dominguez-Bendala is Director of Stem Cell Development of Translational Research and Research Associate Professor of Surgery at the UHealth Diabetes Research Institute, Miami Miller School of Medicine. Juan talks about their recent research on the regeneration of the human pancreas using an innovative approach…Read More


Extending Life of Human Pancreatic Slices Provides Window into Cell Regeneration in the Pancreas with Dr. Juan Dominguez-Bendala Diabetes Research Institute

https://html5-player.libsyn.com/embed/episode/id/15651329/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 18, 2020

Dr. Juan Dominguez-Bendala is Director of Stem Cell Development of Translational Research and Research Associate Professor of Surgery at the UHealth Diabetes Research Institute, Miami Miller School of Medicine. Juan talks about their recent research on the regeneration of the human pancreas using an innovative approach…Read More


Preventing Cytokine Storm and Relevance to Treating COVID-19 with Dr. Cameron Durrant Humanigen TRANSCRIPT

 Download PDF

Aug 17, 2020

Dr. Cameron Durrant, Chairman and CEO, Humanigen explains the condition called cytokine storm and how their research into GMCSF, the master switch of the cytokine storm, has led to the development of the drug lenzilumab, LENZ, that neutralizes GMCSF. Adding LENZ to Remdesivir has shown promising results in early…Read More


Preventing Cytokine Storm and Relevance to Treating COVID-19 with Dr. Cameron Durrant Humanigen

https://html5-player.libsyn.com/embed/episode/id/15644663/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 17, 2020

Dr. Cameron Durrant, Chairman and CEO, Humanigen explains the condition called cytokine storm and how their research into GMCSF, the master switch of the cytokine storm, has led to the development of the drug lenzilumab, LENZ, that neutralizes GMCSF. Adding LENZ to Remdesivir has shown promising results in early…Read More


Gene Silencing Driving Drug Development for Rare Diseases with Dietrich Stephan NeuBase Therapeutics TRANSCRIPT

 Download PDF

Aug 12, 2020

Dietrich Stephan PhD, CEO, NeuBase Therapeutics discusses the history of research into the genetic basis of all diseases, NeuBase’s PATrOL™ platform allowing for intelligent design of drugs that engage with a malfunctioning gene, and the company’s therapies in development for Huntington’s disease and myotonic…Read More


Gene Silencing Driving Drug Development for Rare Diseases with Dietrich Stephan NeuBase Therapeutics

https://html5-player.libsyn.com/embed/episode/id/15591575/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 12, 2020

Dietrich Stephan PhD, CEO, NeuBase Therapeutics discusses the history of research into the genetic basis of all diseases, NeuBase’s PATrOL™ platform allowing for intelligent design of drugs that engage with a malfunctioning gene, and the company’s therapies in development for Huntington’s disease and myotonic…Read More


Intervening in the Aging Process to Treat Age-Associated Diseases with John Dimos Fountain Therapeutics TRANSCRIPT

 Download PDF

Aug 11, 2020

John Dimos, CEO, Fountain Therapeutics describes their approach to the treatment of age-associated diseases and points out that there is a big difference between chronological and biological age. In the search for finding a way to intervene in the aging process, Fountain is taking a hypothesis-free approach and with the…Read More


Intervening in the Aging Process to Treat Age-Associated Diseases with John Dimos Fountain Therapeutics

https://html5-player.libsyn.com/embed/episode/id/15559076/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 11, 2020

John Dimos, CEO, Fountain Therapeutics describes their approach to the treatment of age-associated diseases and points out that there is a big difference between chronological and biological age. In the search for finding a way to intervene in the aging process, Fountain is taking a hypothesis-free approach and with the…Read More


Next Generation Inhaled Therapies for Severe Respiratory Diseases with Anne Whitaker Aerami Therapeutics TRANSCRIPT

 Download PDF

Aug 10, 2020

Anne Whitaker, CEO, Aerami Therapeutics talks about imatinib their inhaled treatment for the rare disease pulmonary arterial hypertension which could potentially be the first therapy on the market to actually reverse the disease.  First approved as a cancer therapy, imatinib stops the progression of the stiffening and…Read More


Next Generation Inhaled Therapies for Severe Respiratory Diseases with Anne Whitaker Aerami Therapeutics

https://html5-player.libsyn.com/embed/episode/id/15543854/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 10, 2020

Anne Whitaker, CEO, Aerami Therapeutics talks about imatinib their inhaled treatment for the rare disease pulmonary arterial hypertension which could potentially be the first therapy on the market to actually reverse the disease.  First approved as a cancer therapy, imatinib stops the progression of the stiffening and…Read More


Using Immunotherapy to Treat Glioblastoma Most Aggressive Brain Cancer with Dr. Apostolos Stathopoulos ERC Immunotherapy TRANSCRIPT

 Download PDF

Aug 5, 2020

Apostolos Stathopoulos, CEO, ERC-Belgium talks about using immunotherapy to treat glioblastoma, the most malignant of all gliomas or brain cancers.  ERC’s therapy, which stimulates the patient’s immune system to mount an immune response against the tumor cells, has demonstrated a clinically meaningful survival benefit…Read More


Using Immunotherapy to Treat Glioblastoma Most Aggressive Brain Cancer with Dr. Apostolos Stathopoulos ERC Immunotherapy

https://html5-player.libsyn.com/embed/episode/id/15481013/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 5, 2020

Apostolos Stathopoulos, CEO, ERC-Belgium talks about using immunotherapy to treat glioblastoma, the most malignant of all gliomas or brain cancers.  ERC’s therapy, which stimulates the patient’s immune system to mount an immune response against the tumor cells, has demonstrated a clinically meaningful survival benefit…Read More


Chronic Heart Failure Drug Development Using Patient-Centric Chip Platform with Ayla Annac InvivoSciences TRANSCRIPT

 Download PDF

Aug 4, 2020

Ayla Annac, CEO and Co-Founder, InvivoSciences shines light on the next generation of precision medicine and explains how IVS is personalizing the drug development process with patient-derived and gene-edited human samples.  The company’s Novel Heart Tissue on a chip platform NuHeart™ enables rapid identification of…Read More


Chronic Heart Failure Drug Development Using Patient-Centric Chip Platform with Ayla Annac InvivoSciences

https://html5-player.libsyn.com/embed/episode/id/15468551/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Aug 4, 2020

Ayla Annac, CEO and Co-Founder, InvivoSciences shines light on the next generation of precision medicine and explains how IVS is personalizing the drug development process with patient-derived and gene-edited human samples.  The company’s Novel Heart Tissue on a chip platform NuHeart™ enables rapid identification of…Read More


Explaining COVID-19 to Kids with Mel Kaspin Blume Author TRANSCRIPT

 Download PDF

Jul 29, 2020

Mel Kaspin Blume is a copywriter and storyteller and the author of Screens, Beans and Quarantines, a free downloadable children’s book addressing the questions kids have about the impact of COVID-19.  With a six year old daughter and three year old son, Mel decided to make up a story to help parents open up…Read More


Explaining COVID-19 to Kids with Mel Kaspin Blume Author

https://html5-player.libsyn.com/embed/episode/id/15404168/height/90/theme/custom/thumbnail/yes/direction/forward/tdest_id/500706/render-playlist/no/custom-color/eea358/

Jul 29, 2020

Best Practices in Pain Management – Patient Mind

https://www.patientmind.org/pain-management.html

If you haven’t already, please take a pre-survey.

MODULE 1: PREPARE FOR CLINICAL DIALOGUE IN PRIMARY CARE AND IN SPECIALTY CARE

RESOURCES

​Communication Guide
Algorithm for Motivation



MODULE 2: PAIN PATHOLOGY AND HOW TO APPLY IT TO ONE’S PERSONAL PAIN MANAGEMENT

RESOURCES

​Communication Guide
Algorithm for Motivation


MODULE 3: THE PAIN TREK… WHAT DOES PROGRESS LOOK LIKE IN PAIN MANAGEMENT?

RESOURCES

​Communication Guide
Algorithm for Motivation



​Made possible by a grant from Collegium.




​US DEPARTMENT OF HEALTH PAIN MANAGEMENT REPORT

​See Full Pain Management Report Here>>Pain Management Fact Sheet (Patients/Families)
Pain Management Education (Veterans)
Behavioral Health & Addiction Help (Anonymous)

Picture

​Patients with acute and chronic pain face a crisis because of challenges in obtaining adequate care, resulting in profound physical, emotional, and societal costs. According to the CDC, 50 million adults in the US have chronic daily pain, with 19.6 million adults experiencing high impact chronic pain that interferes with daily life or work. The cost of pain to our nation is estimated between $560 billion and $635 billion annually. At the same time, our nation is facing an opioid crisis that, over the past two decades, has resulted in an unprecedented wave of overdose deaths associated with prescription opioids, heroin, and synthetic opioids.

Picture

​An emphasis on an individualized, patient-centered approach for diagnosis and treatment of pain is essential to establishing a therapeutic alliance between patient and clinician. Acute pain can be caused by a variety of conditions, such as trauma, burn, musculoskeletal injury, and neural injury, as well as pain from surgery or procedures. Health systems and clinicians must consider the pain management needs of every individual.


Picture

​A multidisciplinary approach for chronic pain across various disciplines, using one or more treatment modalities, is encouraged when clinically indicated to improve outcomes. The choice of medication should be based on the pain diagnosis, the mechanisms of pain, and related co-morbidities following a thorough history, physical exam, other relevant diagnostic procedures and a risk-benefit assessment that demonstrates that the benefits of a medication outweigh the risks. The goal is to limit adverse outcomes while ensuring that patients have access to medication-based treatment that can enable a better outcome and function. Various classes of medications, including non-opioids and opioids, should be considered for use. ​​

Picture

​Risk assessment is one of the four cross-cutting policy approaches necessary for best practices in providing individualized, patient-centered care. A thorough patient assessment and evaluation for treatment that includes a risk-benefit analysis are important considerations when developing patient-centered treatment. Risk assessment involves identifying risk factors from patient history; family history; current biopsychosocial factors; and screening and diagnostic tools, including prescription drug monitoring programs, laboratory data, and other measures. Risk stratification for a particular patient can aid in determining appropriate treatments for the best clinical outcomes for that patient. Safe opioid use includes regular reevaluation of the patient.


​Improved insurance coverage and payment for
different pain management modalities is critical to improving access to effective clinical care and should include coverage and payment for care coordination, complex opioid management, and telemedicine. It is also important to note that in many parts of the country, patients have access only to a primary care provider (PCP). Support for education, time, and financial resources for PCPs is essential to managing patients who have painful conditions. A multimodal approach that includes medications, nerve blocks, physical therapy, and other modalities should be considered for acute pain conditions. ​​​
Picture

Complementary and Integrative Health, including treatment modalities such as acupuncture, massage, movement therapies (e.g., yoga, tai chi), and spirituality, should be considered when clinically indicated.




​Restorative Therapies, including those implemented by physical therapists and occupational therapists are valuable components of multidisciplinary, multimodal acute and chronic pain care. Interventional Approaches, including image-guided and minimally invasive procedures are available like trigger point injections, radio-frequency ablation, cryo-neuroablation, neuromodulation, and other procedures.
Picture

​​Behavioral Approaches for psychological, cognitive, emotional, behavioral, and social aspects of pain can have a significant impact on treatment outcomes. Patients with pain and behavioral health comorbidities face challenges that can exacerbate painful conditions as well as function, QOL, and ADLs. Effective multidisciplinary management of the potentially complex aspects of acute and chronic pain should be based on a biopsychosocial model of care.

Picture

Stigma can be a barrier to treatment of painful conditions. Compassionate, empathetic care centered on a patient-clinician relationship is necessary to counter the suffering of patients with painful conditions and to address the various challenges associated with the stigma of living with pain. Stigma often presents a barrier to care and is often cited as a challenge for patients, families, caregivers, and providers.

Addressing barriers to access to care is essential in optimizing pain care. Recommendations include addressing the gap in
our workforce for all disciplines involved in pain management. 

Picture

Improving education about pain conditions and their treatment for patients, families, caregivers, clinicians, and policymakers is vital to enhancing pain care. Patient education can be emphasized through various means, including clinician discussion, informational materials, and web resources. More effective education and training about acute and chronic pain should occur at all levels of clinician training, including undergraduate educational curricula, graduate professional training, and continuing professional education.
​U.S. Department of Health and Human Services (2019, May). Pain Management Best Practices Inter-Agency Task Force Report: Updates, Gaps, Inconsistencies, and Recommendations. Retrieved from U. S. Department of Health and Human Services website: https://www.hhs.gov/ash/advisory-committees/pain/reports/index.html11936 W. 119th Street, Suite 216, Overland Park, KS 66213
​Copyright © Patient Mind Inc. 2021

Self-Care for Caregivers During COVID-19 Outbreak – Global Genes

https://globalgenes.org/2020/03/26/self-care-for-caregivers-during-covid-19-outbreak/

Self-Care for Caregivers During COVID-19 Outbreak

March 26, 2020

Our youngest son Ezra will turn 7 next month. He has survived juvenile myelomonocytic leukemia (JMML), chemo, a feeding tube, numerous surgeries, hundreds of blood tests and labs, food allergies, countless illnesses, hospitalizations, a rare disease called Noonan syndrome, and approximately 1.5 years of quarantine. Shelter-in-place, social distancing, and going to great lengths to keep him healthy are not new concepts for our family. We spent nearly a year housebound with Ezra after he was diagnosed with juvenile myelomonocytic leukemia (JMML) at 4 months old, and weeks and months at a time ever since he was diagnosed with Noonan syndrome (NS). NS is a multi-system disorder, and it’s made Ezra’s tiny body unpredictable when it comes to how he handles different illnesses. Most often, illness hits him much more severely than it would a typically healthy child.

As many rare disease parents can attest, the pressure and weight of being solely responsible for keeping our children alive and well is very heavy. Add the threat of a widespread pandemic, and the magnitude is so much greater, even though many of us are well prepared for this way of life. Over the past couple weeks since COVID-19 became a real threat in our area, I have ping-ponged between an “I was made for this! Every experience in Ezra’s life has prepared me for this,” mentality, and a “How have I worked so tirelessly to keep Ezra alive for 7 years, only to be threatened now by a novel virus that so many around me don’t seem to be taking very seriously? We’re doomed,” mentality. It’s overwhelming!

So now, more than ever, I think it’s important that we share the things that are helping us manage these new challenges with as much positivity and hope as we can. Over the past nearly 7 years as Ezra’s mom, and gathering from my own experiences becoming a yoga teacher, these are some of the tools that help me deal with the pressure of keeping Ezra healthy:

  • Pray or meditate. We are constantly being inundated with information from the media and everyone’s opinion about all of this right now. Prayer or meditation is a good time to put your phone on “do not disturb,” be still, and quiet the noise for a moment. (Insight Timer is an excellent free meditation resource)
  • Body scan everyday: head to toes. Ask, how am I feeling? What is my body telling me? Is my heart racing? Is there tension in my shoulders? What emotions are manifesting physically in my body right now? What am I eating and drinking and how is it making me feel? Take note and look for patterns—becoming aware of how your body actually feels can help you distinguish or understand better the physical sensations in your body versus any negative/anxious thoughts you might be having.
  • Practice yoga or your preferred form of exercise. The amazing thing about this unique moment in history is that there are so many online resources available to us as studios and gyms have shifted to livestream classes. Movement releases endorphins and can help shift our entire outlook. Willamette Valley Power Yoga, the studio where I teach, is currently offering online classes and I’d love for you to join me!
  • Breathe in fresh air.  Depending on the restrictions in your area, practice social distancing and go for a walk outside to breathe. If you have a partner or helper, take turns on some solo walks, even if it’s just once around the block. If the weather is bad, etc, no matter what, step out (or open a window, even) every single day and breathe some fresh air into your lungs—it’s life-giving and a natural mood booster.
  • Distract yourself with laughter.  Find one thing everyday that’s funny or an emotional release. An outrageous meme, a dance party/concert in the kitchen, a ridiculous Netflix show. Allow yourself to laugh or escape in a healthy way, even for a moment, even when things are uncertain or scary (especially when they’re uncertain or scary)!
  • Most importantly, reach out and talk to someone. Your friends, your rare disease peers, this Global Genes community—reach out to someone who “gets it” and express your feelings. Even as well versed as we are in caring for our kids, this is a new challenge for everyone. We need to help lean on and lift up each other, now, more than ever.

This piece is a guest post contributed by Elisabeth Parker. Elisabeth is the mother of Ezra Parker, who has a RASopathy called Noonan syndrome. She is a volunteer board member for RASopathies Network, Baptiste yoga teacher, and spends her free time advocating and encouraging other rare disease families on Instagram.

Building Relationships with Your Representatives – Global Genes – Fredys Garcia

https://globalgenes.happyfox.com/kb/article/22-building-relationships-with-your-representatives/

Building Relationships with Your Representatives Fredys Garcia Aug 21, 2020views icon 104

So you want to build relationships with your government representatives?

Thank you for including us on your journey! Most likely you have a need for this toolkit Building Relationships with Your Representatives because you or a loved one has a rare disease. As you prepare to use the tools in this kit, we want you to know that you are not alone. We are in this together. It is our hope that the personal stories, resources, tips, and suggestions for selfreflection in this guide will make the road to advocacy for your rare disease more manageable. We know, all too well, that a lack of information and support for people living with RARE diseases can lead to feelings of dis-ease. Please know, it’s not just you—feeling depressed, anxious, and isolated are common conditions in the RARE community. Fortunately, RARE Advocates see these challenges as opportunities to take control back from their disease by filling the void with support groups, knowledge, and advocacy. While we believe you will benefit from reading all of the material in this toolkit, we don’t want to overwhelm you. We’ve included a table of contents to make it convenient for you to find the information you are most interested in at this time.

Overview of Advocacy

Talking the Talk

You don’t have to become a political “wonk” to be a successful advocate; but knowing the basics makes it easier to navigate the road ahead. Like the medical industry, the legislative field has its own language. Don’t be afraid to ask a legislator or their staff member to define a legal term you don’t understand; they will appreciate your desire for clarity.

We’ve included glossaries at the end of each section to make it easier for you to become familiar with basic legislative terminology often used by lobbyist, policy experts, and seasoned advocates. Knowing these terms prepares you to talk the talk when the director shouts “ACTION!” and the spotlight is on you to educate a government representative about your rare disease advocacy goals.

All legislators have the same job: to represent their communities (constituents), including the 1 in 10 Americans who are impacted by rare diseases. This toolkit provides an overview of what it means to be an effective advocate. It highlights the minimal differences between the state and federal legislative systems.

What’s In a Title?

Legislators are referred to by a number of titles. Listed are some of some of the most commonly used titles:

• Lawmaker

• Representative

• Elected official

• Legislator

• Policymaker

• Member (federal)

• Congressman/Congresswoman (federal)

The Road to Advocacy: Jean’s Journey

Like Dorothy and her three amigos on the road to Oz, there are other advocates on the path with you. Which is why, through a compilation of their reports from the field, we are able to provide you with a toolkit companion, Jean Jergens. We believe “Jean’s Journal Notes” from her road to advocacy will motivate and inspire you to use the information in this Building Relationships with Your Representatives toolkit.

Squeaky Wheel on the Road Less Traveled

With the exception of your grocery store shopping cart, the squeaky wheel does get the oil. Sharing your story with legislatures can have a huge impact on rare disease awareness. It can help spark the development of new treatments, therapies, and policies that promote a better quality of life for you, other rare patients, and caregivers.

Advocating for the creation and passage of good policies and supporting existing policies is equally as important as defeating bad policies that reduce funding for: research, clinical trials, and impose restrictions or changes to healthcare coverage.

Getting to Know All About Your Member

Like the grand poobah of a small country, it is helpful to have strong allies who will have your back when troubles a brewin’. Fortunately, you don’t have to host a State Department dinner to meet potential allies. Experienced advocates know that legislators at every level of government are ally-worthy; which is why Jean joined her neighborhood action group. The group’s monthly meetings often include guest speakers who are city-level politicians and local civic leaders representing special interest groups.

At the end of the meetings Jean introduced herself to the speakers. She told them her rare disease advocacy goals and she asked them to support her efforts. Jean’s involvement with the neighborhood action group allowed her to meet potential allies and to share her advocacy goals with people outside of the RARE community.

Friended!

Jean was not looking for a new BFF, but she knew building relationships with local politicians could lead to introductions to legislators up the ladder. Other advocates told her that having a good rapport with legislators increases the odds for her to help them get bills introduced, to help draft bill language, to shape the debate on the issues, and to get legislation signed into law. She was also told that it is extremely helpful to have a legislative champion in her corner who can knockout bad policies and amend weak legislation.

The Internet makes it easy to find out who your legislators are and where they stand on healthcare issues. Ideally, you want to find representatives who have a record of supporting unique issues like rare diseases. Legislators who work on these types of issues likely have a personal connection to them. But don’t let that stop you from sharing your story, you never know who it touches.

It is most beneficial to establish and maintain a consistent relationship with legislators in between sessions. Use this, less busy, time to remind your legislators that you want to be actively involved when action is needed for legislation in the new session.

You can find out who your representatives are at the state and federal level with a Google search. You will need to enter your address when searching. There are also resources at the end of this toolkit on how to get information on your representatives.

Sessions:

Each Congress lasts two years and is comprised of two sessions for legislators to work daily on government legislation. Since 1934, the first session convenes on January 3rd of odd-numbered years and adjourns on January 3rd of the following year; the second session runs from January 3rd to January 2nd of even-numbered years. Congress traditionally takes vacation for a month in August.

Homework First

Do your homework first and it will be easier to build rapport with your representatives. Jean knows politics are about people, so she did research to find information about her representative’s family, hobbies, achievements, and politics. It helps to know what issues your representatives are passionate about. Look for things you may have in common with them: education, sports affiliations, hobbies, charitable activities, or who knows, even fly-fishing for large mouth bass.

Legislators are often active on social media (Facebook, Twitter, and LinkedIn) and/or have their own campaign websites. Read their bios and PR releases, and check their voting record on your state’s government website. Use a magnifying glass to get in close on the people and objects around them in the photos on their campaign website. The 100-pound large-mouth bass mounted on the wall, trophies, diplomas, and photos of them in grip and grins with other, hopefully recognizable, people can be useful rapport building information.

Remember to keep an open mind if the information you uncover is unfavorable or not relevant to your cause. While, Jean didn’t have any shared interest with her representatives, she did discover something useful. She was happy to learn that her state senator, Wallace Smalls, supported an unpopular piece of legislation that provides students in her district with free, off campus, WIFI.

“Building and nurturing lasting relationships with legislators is so key in this process. You will find that they will be your champion, help you navigate and provide guidance through this journey. While there are people who are incredibly supportive, you may also find support in the most unlikely people through this process. At the end of the day, whether you reached your goal or not, building relationships is a success and milestone in of itself.”

-SHARON KING, PRESIDENT, TAYLOR’S TALE

Crush It!

Now that you know who your legislators are and also some basic background on them, it’s time to introduce yourself. It’s natural for this step to feel like the preteen jitters you had the first time you called your junior high crush. After Jean made her first, sweaty palm, call to Representative Smalls, calling his office on a regular basis became easier.

Ongoing communication is important; and it takes only a few minutes to convey your feelings about an issue on a phone call, in a handwritten note, or an email. Time and location allowing, face-to-face meetings are the most effective way to influence your legislators.

Mind your manners! Remember, you are one of many constituents clamoring for support from your representatives. When you establish a relationship with the legislator ask him or her how they prefer to be contacted.

Unless you have really bonded with your representatives, avoid sending their home baked goodies for the holidays or birthday bouquets. You should be persistent about your advocacy goals, but you don’t want to be “unfriended”! When you get a legislative win it is appropriate to send the representative a heartfelt letter of gratitude; it’s also a good idea to include in the letter how the legislation will positively affect the rare disease community.

Field Tip :

No Assumptions Jennifer Bernstein of Horizon Government Affairs has counseled rare disease advocates on how to talk to representatives. She offers a cautious tale about prejudging the way a representative may respond to your goals. She advises advocates to keep an open mind about the person they will be meeting with.

Bernstein shared that during a counseling session with a rare advocate who had lost a child to cancer, she was aware that the representative they were preparing to meet with was a member of the Tea Party. Because of the representative’s past voting history and political platform (the intentions and principles of a political party), Bernstein expected the meeting to be a waste of time. She thought he wasn’t going to support anything that involved government spending no matter how worthy.

As it turned out, his wife had recently given birth and he began to cry as the advocate told her story. When the meeting was over, he told her “Whatever you need, I’ll get it for you. If it’s money, that’s fine.” Bernstein was shocked and said, “I’d never seen anything like that.”

This is just one example of the potential impact you can have. One in 10 Americans are impacted by a rare disease; which suggests the odds are in your favor that talking about a rare disease will build a connection with your legislator.

No Place Like Home

Representatives primarily work in their state capitol offices, on Capitol Hill, in Washington, D.C. But, like Dorothy’s desire to return to Kansas, representatives also like to go home. During session breaks they are often “in-district,” which means they are home in the jurisdiction they represent as a legislator. Contact their capitol office to see if you can get an appointment with them the next time they’re home. Also ask if the representative has any town hall meetings scheduled during his in-district time.

Legislators usually have staff members who work in different policy areas: healthcare, economics, workforce development, and other specializations. They have expertise in these areas and are generally the legislator’s go-to resource for policy recommendations and related information. They can be a great resource for information and for building rapport with your representative.

Call these experts and give them your “elevator pitch,” and request a meeting with them. They may ask you to follow-up the discussion with an email. Do this follow-up promptly and send a duplicate copy of the email communication to the staff that handles the specific issues (if this information isn’t on the representative’s website call his office and request it).

“When I was first writing my letter to my representative, I made sure to include some key tactics. I kept my letter logical and I was specific in what I was asking for. And I made sure what I was asking was also do-able. But the key point of my letter was to share my son’s story. I included a picture of him and conveyed emotion through his story. But I did not ask for sympathy, I asked my representative to be that someone who can help him because we had already tried other options.”

-NICOLE DRYER, PARENT ADVOCATE

Come on Down!

Getting a meeting with Representative Wallace Smalls was easier than Jean thought it would be, maybe he connected emotionally with the letter she sent him. The appointment was set and Jean felt like a contestant on the “Wheel of Fortune,” who had much more to gain than winning a new car.

Jean wanted to make the most of their meeting, so she wrote a short to-do list that included: premeeting preparation and a reminder to send a thank you card with a short summary of what they discussed. Remember, legislators work for you! This first meeting is a small, but important part of an ongoing process.

Script Rehearsal

Do your homework, review your notes, and if you have to, make a cheat sheet on your disposable coffee cup. It is important to make a credible, first impression when you meet with your representatives and their staff. Look at their personal website or your state’s website for information regarding your legislators stand on rare diseases or related issues; what committees they belong to; bills they have sponsored; and how they have voted in the past on similar issues.

Subscribe to their newsletter and monitor their activity on Facebook, Twitter and in the local media to get current news on their legislative activities. You will feel more confident about meeting with them when you know their voting record on legislation relevant to your advocacy goals. You may not know all of the details of the legislation that is important to you, but it helps to know the basics.

If numbers will help tell your story and make your case stronger, have that data ready. But, beyond the legislation and the numbers, the most important thing is to tell your story with passion and conviction.

The most experienced public figures practice what they’re going to say, even when they’ll have the assistance of a teleprompter. They know practicing a speech helps them to appear confident and prepared. While practice doesn’t always make perfect, it can help you share your story and advocacy goals in a more confident and organized manner.

You are advocating for healthcare legislation because you or someone you love is in physical, emotional, and possibly financial distress because of a rare disease. Healthcare is a very personal issue to each one of us. You want the representative to make an emotional connection to your story.

Moved by heartbreaking images on television, usually in the wee hours of the night, people generously donate money to worthy causes all around the world. Give your representative a photo of your family or a drawing from your child. The power of meeting and seeing the faces of the people affected by their legislation can influence lawmakers to take action.

Lastly, know what you want the representative to do; this is your “ask.” State it clearly and succinctly. You can put together a summary of the issue on a one-pager to share with your representative and then give it to the rep at the end of the meeting. Representatives have many meetings throughout the day. Make it easier for them to process your information by hearing it first, and then being able to read and process it second. Also, providing a typed summary allows them to refer back to your key points and your ask after you leave.

“When I first decided to begin my journey into advocacy, I knew the first thing I had to do was research my state legislatures and get to know their opinions and views. But instead of taking this information and thinking how do their views fit my cause, I looked at my cause and figured out, based on their views, why they would care. I used research and statistics to bring my cause to life and presented a win-win situation.”

-SHARON KING, PRESIDENT, TAYLOR’S TALE

Lights Camera Action!

You’ll want to feel confident and ready for your close up when the spotlight is on you. So what to wear? There are many things a meeting with your representative is not, the least of which is: a tailgate party, a day at the beach, or casual Friday at the office. Conventional wisdom is to dress appropriately for the person and the place; which in this circumstance is a government official, in a government office—enough said!

Typically, you’ll have about 15 minutes to introduce yourself, tell your story, and make your ask. You should be prepared to do most of the talking during the meeting. The critical thing is to connect your ask to your story. Tell the representative how the particular legislation, funding, and/or other action you are seeking will impact you, your child, or other people with a rare disease. Also, ask to have your picture taken with the representative. Get permission to share it on social media (remember to tag them) and other materials

That’s a Wrap!

If you take a photo with your representative and have permission to share it on social media, link it to the representative’s Twitter account and Facebook page. Raise awareness for your cause by including a comment about your meeting when you post the photo. Check out the Global Genes’ toolkit “How to Promote Your Rare Disease Story Through Social Media” for more ways to share your rare disease story.

Whether you meet with the representative or a staff member, send a thank you note or email right away.

More specifically, send your thank you email in the evening or on weekends when legislators and their staff are less busy. When you send a thank you, also include: a summary of the meeting, your ask, and any other information you promised to share with them.

When there is an upcoming vote connected to your advocacy efforts send your representative a message as soon as possible. Be clear in your subject line and email closing about the issue (example: “Thank you for supporting bill number 8888 on rare diseases–Please vote yes!”). Remind your representative of your concerns and that you hope they will use this opportunity to support your goals. Keep your issue on their radar and get updates on the status of legislation by touching base with your representatives regularly.

Continue to communicate with the staff members and/or the representatives throughout the year; and keep track of the representative’s actions on your issues. When your representative sponsors a piece of legislation you agree with, send them a thank you email. Providing positive feedback goes a long way. If your representative is passing on opportunities to act on the issues you discussed during your meeting, make a follow-up call or write an email reminder about the importance of the issue.

“When you meet with your representative, remember that their time is pressed, so make it easy for them. Come prepared having done research on your representative and bring materials such as contact information, fact sheets, or in my case, a copy of the old legislation. Remember you’re trying to educate them on this matter so be confident, to the point and clear about your needs. You are the expert and they work for us and they want to help, if you keep that in mind it gets easier each time.”

-NICOLE DRYER, PARENT ADVOCATE

Tips and Tricks to Remember from Rare Advocates like You

1. There is power in numbers.

2. Ask for help. You are the constituent, government legislatures work for you. They want to hear what you have to say. They may not be able to solve all of your problems, but they do want to help. 3. Attend meetings, make phone calls, and send letters to your representatives or their staff; you never know who will take interest in your cause.

4. Don’t be discouraged if someone isn’t on the same page as you.

5. If it’s your first time navigating the system, don’t be afraid to ask questions or ask for help. The network of advisors and supporters are the building blocks of your success.

6. Know where your representatives stand in their issues and make your cause relevant to them.

7. When meeting your representative: come prepared, keep it simple, and give them a reason to care.

8. Bring your cause to life, use numbers, stories, and photographs to make it real; remind them of the financial and human cost.

9. Connect your cause to the big picture; show the social impact of how legislation affects the rare disease community.

10. Make connections and hear their feedback.

11. Nurture your relationships with your representatives; they may be your biggest supporter and champion.

It may take several attempts before the legislation you’re advocating for makes it through the system. No matter the outcome, you are a winner! By building relationships, sharing your story and bringing awareness to your disease and the rare community, you are helping to move mountains. Jean knows legislative change is a marathon not a sprint, and she will continue to share her journey to advocacy at the state and federal level.

“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You’re on your own. And you know what you know. And YOU are the one who’ll decide where to go.”

-DR. SEUSS

Legislative Glossary​​​​​​​

Act: a formal decision, law, or the like, by a legislature, ruler, court, or other authority; decree or edict; statute; judgment, resolve, or award.

Advocate: to speak or write in favor of or against; support or urge by argument; recommend publicly. Amendment: a change or addition to legislation.

Bill: a form or draft of a proposed statute presented to a legislature, but not yet enacted or passed and made law.

Bicameral: a legislative body with two branches or chambers (i.e. the U.S. Congress is comprised of the House and Senate).

Bipartisan: representing, characterized by, or including members from two parties or factions (i.e. supported by Democrats and Republicans).

Caucus: a meeting of party members within a legislative body to select leaders and determine strategy that pursues its interests through the legislative process.

Committee: groups of legislators who are assigned, on either a temporary or permanent basis, to examine matters more closely than the full legislative chamber can.

Constituent: a citizen who authorizes another to act on his or her behalf, as a voter in a district represented by an elected official (i.e. you are a constituent of your local district congressional representative).

Grassroots: general population or individuals, who are the main body of membership for a group or interest.

Incumbent: currently holding an indicated position, role, office, etc.

Legislation: laws, both approved and proposed, that are decided upon by a legislative body.

Lobby: to campaign for the purpose of influencing members of a legislature to act according to the group’s or individual’s special interest. Lobbying can influence votes, decisions to appoint or appropriate dollars, etc. Asking any elected official outside one’s own legislative district to take any action is considered lobbying.

Lobbyist: a person who tries to influence legislation, rules, regulations, appointments, appropriations, and more on behalf of special interest issues; a member of a lobby.

Rare Disease: a disease is considered rare if it has a prevalence of fewer than 200,000 affected individuals in the United States. There are approximately 7,000 rare diseases currently identified.

Senate: an assembly or council of citizens having the highest deliberative functions in a government, especially a legislative assembly of a state or nation.

Unicameral: a legislative body with a single branch (in many countries, a parliament is unicameral).

Resource Guide​​​​​​​

Rare Disease Legislative Advocates http://rareadvocates.org/ A program of the EveryLife Foundation for Rare Diseases, provides support for the advocacy of rare disease patients and organizations. This resource provides information and news about rare disease legislation, a list of members of the rare disease caucus, and a rare disease scorecard on the voting records of members in the House and Senate.

National Organization of Rare Disorders http://rarediseases.org/advocate/ The advocacy page of NORD provides links to policy issues and policy statements, as well as information tailored to patients and their families, patient organizations, and researchers.

American Planning Association: Tips for Successful Legislative Meetings http://bit.ly/Advocates-Toolbox

American Psychological Association: Advocacy Information http://bit.ly/APA-Advocacy

National Association of Social Workers: Advocacy Resources http://bit.ly/NASW-Advocacy

University of California, Riverside-Government and Community Relations: Tips for Effective Lobbying http://bit.ly/UCR-EffectiveLobbying

An Overview of State Legislatures​​​​​​​

Jean’s three years of library science courses help her to make light work of researching the legislative process; but if you thought high school civics’ classes were a snooze fest, you’re not alone! Hopefully, your need for this toolkit and Jean’s journey to advocacy story makes this information on how government lawmakers do their jobs more interesting.

United We Stand!

Fast Fun Facts:

• State legislature is the governmental body that presides over each of the 50 United States and its territories.

• The formal name varies from state to state, for example, in two states, the legislature is simply called the Legislature, or the State Legislature; in nineteen states, however, the legislature is called the General Assembly.

• In Massachusetts and New Hampshire, the legislature is called the General Court, while North Dakota and Oregon designate the legislature as the Legislative Assembly.

• Every state, except Nebraska, has a bicameral legislature, meaning that the legislature consists of two separate legislative chambers or houses.

• The smaller chamber is called the Senate and is usually referred to as the Upper House.

• Of the two chambers, members of the Senate typically represent a larger geographical area and a higher number of citizens and usually serve longer terms, generally four years.

• In 41 states, the larger chamber is called the House of Representatives.

• Five states designate the larger chamber the Assembly (California, Nevada, New Jersey, New York and Wisconsin) and three states (Maryland, Virginia and West Virginia) call it the House of Delegates. • Members of the larger chamber usually serve two-year terms.

• Some states, like Missouri, have enacted term limits for their legislative chambers restricting the number of years either a representative or a senator can serve.

It’s difficult to generalize about state legislatures, since they vary so greatly from state to state. If you are not sure who your representatives are or if you want to learn about your members’ actions on rare disease legislation check out the resources at the end of this section to find more state specific information

And review the “House Names by State” in the Resource Center to see what each of the two chambers are called in your specific state.

How a Bill Becomes a State Law​​​​​​​

Stately Ideas

The following represents the typical procedure for transforming a bill into law. It is important to note, however, there is some variation in the legislative process from state to state. The steps here describe the passage of general bills not resolutions.

A resolution is not an official bill but is passed with the goal of demonstrating consensus on a topic and/or for administrative purposes. The procedures for local bills or budget bills are also different. In California, the budget bill is legislation that presents the governor’s proposal for spending authorization for the next fiscal year. It is then prepared by the Department of Finance and submitted to each House of the Legislature in January (accompanying the governor’s budget). The budget bill becomes the Budget Act upon signature by the governor, after any line-item vetoes. Like California, every state legislature has a website with information about their legislative process. Consult your state legislature’s website for additional procedural guidance regarding budget bills.

Bill Drafting

How many legislators named Bill does it take to draft a bill? If you guessed one, move to the head of the class! A legislator, named Bill, may develop an idea for a bill by listening to his constituents, some of whom are likely named Bill, and then he works to solve the issue.

A bill concept may also grow out of the recommendations of an interim committee study conducted when the legislature is not in session. The idea is researched to determine which state law needs to be changed or to be created to best solve a problem. Unfortunately, some bills may be introduced that are bad for rare disease causes. As a rare disease advocate it is equally important to educate your representatives about how a bill may negatively impact your cause.

The Advocate’s Role 

• As an advocate, you can visit a legislator and request that a bill be drafted to fund services, address a problem, or change a policy.

• Getting to the bill drafting phase does not typically happen overnight. It can often take months (or even years) of educating your member depending on the policy itself and the member’s priorities.

• This is the main reason why building a relationship with your member is so important. You want your representative to regard you as an expert on your disease.

Bill Introduction

After a bill is drafted and before it gets the bum’s rush by those who oppose it, the bill is dressed up like a rooster in a tux and introduced by way of the listed protocols:

• A legislator may introduce the bill in the body of which he or she is a member by filing it with the appropriate clerk.

• A bill is given a caption/title and a number. The bill number allows the legislator and the public to track the progress of the bill.

• Some states have bill filing deadlines, so be sure to consult with your legislator on the timing of filing and introduction of any bill.

Your state government’s website may offer a way to sign up to receive alerts on specific bills. After a bill is introduced a short description of it is read aloud while the chamber is in session; this ensures that all the members are aware of the bill and its subject. This step is called the first reading, and it is the point in the process where the chamber leadership assigns the bill to committee(s).

How often a session occurs, the schedule of votes, and the process varies by state. The committees, comprised of a small group of assigned legislators, are often topic specific and standing or ad hoc in nature. The committee assignment is announced on the chamber floor during the first reading of the bill. In some states, depending on the issue, bills are assigned to several committees.

The Advocate’s Role​​​​​​​

• When favorable legislation is introduced issue a press release, write a letter, and/or post a message on your personal website, Facebook, or Twitter accounts applauding the bill’s introduction.

• Likewise, if it is a bad bill, you can use the same social media tools to oppose the legislation in whole or in part.

• Advocates can also express neutrality or ambivalence on a bill if it is neither harmful nor ideal for your advocacy agenda.

• Whatever your position, as an advocate, it is important to use your voice to draw awareness to the issues you care most about. You want the legislature to recognize you as an expert and someone they can reach out to you about rare disease legislation.

Committee Process

The governor of your state appoints committee leadership, or chairs. So, pull up a 3-legged chair and stay awhile!

1. The committee process allows a bill to be thoroughly discussed and debated by the legislators, the public, and those who will be directly impacted by the bill.

2. The chair of each committee decides when the committee will meet and which bills will be considered.

3. The committee leadership often has great influence over the direction and the activities of the committees.

Committees have several options when considering a bill. They can:

– Approve the bill language as is.

– Amend the bill language draft.

– Defeat or “kill” the bill.

If a bill is defeated in committee, the bill is generally considered “dead” for the rest of that session. For reconsideration a dead bill would need to be reintroduced during the next legislative session.

Committee chairs and ranking members play a key role in the legislative process and should be targeted in your advocacy efforts, even members who do not represent your district. Information regarding standing committees and subcommittee membership can be found on your legislature’s website.

It is also important to know that in many states bills can be assigned to multiple committees and often in both Houses of the legislature. This means that even if a bill fails in one committee, it may still make it out alive in another committee.

Rules regarding this process vary by state. So, you’ll want to learn more about this process as it applies to your state. When a bill escapes the hatchet and is passed by the committee(s) to which it was referred, the bill is available to be voted on by the entire body of members.

“If you live in a country run by committee, be on the committee.”

-UNKNOWN

The Advocate’s Role 

During the committee process advocates should:

• Write to committee members and encourage a hearing on the bill(s) important to them.

• Prepare oral and/or written testimony for committee hearings.

• Notify the committee of their opposition/ support or share any general information they would like to provide by checking a “for information only” box upon attendance of the hearing.

• Recruit fellow advocates and allies to show a strong presence during hearings on key legislation.

“It is important to prepare for a committee presentation! Prepare your elevator pitch and bring any helpful handouts or visuals. Having different perspectives is always helpful. I remember a young woman who has PKU came with her two roommates and they spoke on her behalf and attested to how PKU affects not only her, but also those around her. It was a powerful moment.”

-NICOLE DRYER, PARENT ADVOCATE

Floor Action: Dance-A-Thon

Before teams take to the floor for a dance marathon they are usually given the following rules: participants can only leave the floor when nature calls and they cannot fall asleep; although some marathons allow one member of the team to sleep as long as the other member continues dancing while keeping the sleeper vertical.

Floor action for a bill can also become a marathon. And when it does, it is the likely cause of why members get caught on camera snoozing while in session. The day a bill appears “on the calendar” it is open to debate and amendment by the entire body considering it. The bill is then called up for passage, and after being considered the third time and debated (eyelids getting heavy), it may be passed with or without amendment by a majority of the (awake) members to which the body is entitled.

The Advocate’s Role 

• You can contact key legislators in advance of a floor vote to ask them to speak either in favor of or in opposition to a bill. And advocates may want to provide talking points for legislators who support their position, especially when amendments are being made to the bill.

Bill Is Engrossed and Enrolled

The bill, passed by the originating chamber, then goes to the office of the clerk where it is retyped, without errors or erasures, and is transmitted to the other chamber for consideration. The bill is engrossed or reproduced with any amendments inserted in the proper places. The other chamber then goes through a similar process of considering the bill.

After being passed by both chambers, the bill is enrolled (retyped) without errors or erasures, by the clerk in the chamber of origin. This step involves preparing the bill in the exact form passed by both Houses.

Conference Committee Process

The 24-hour dance-a-thon continues—“18 hours left to go, swing your partner to and fro!” If a bill is passed with amendments, it may need to return to the originating chamber in its modified form. • That chamber can either agree or disagree with the amendments.

• If the amendments are agreed to, the bill is enrolled and sent to the governor.

• If the amendments are not agreed to, a conference committee can be requested to work out differences between the versions.

• In this case, conferees are assigned, generally comprised of an equal number of legislators from both chambers.

Once the conference committee reaches agreement, a conference committee report is prepared and must be approved by the conferees. Conference committee reports are voted on in each chamber and must be approved or rejected without amendment. If approved by both chambers, the bill is sent to the governor.

The conference committee process can vary considerably from state to state, so it is important to consult the rules for your legislature.

The Advocate’s Role 

• Advocates may ask legislative leadership to appoint legislators who are champions for your cause to the conference committee.

Governor’s Action

Upon receiving a bill, the governor has a set number of days in which to:

– Sign the bill

– Veto it

– Allow it to become law without a signature

If the governor vetoes the bill and the legislature is still in session, the bill is returned to the chamber from which it originated with an explanation of the governor’s objections. A certain number of votes are required by each chamber to override a governor’s veto.

The Advocate’s Role 

• If a governor seems hesitant about signing a bill, you can write letters, op-ed essays, and/or issue press releases urging the governor to sign the bill.

• When a governor signs a bill, advocates may issue a press release about the signing.

• When there is a bill signing ceremony encourage other advocates and your supporters to attend.

• Show appreciation. Give an award to the legislators or other elected officials who support your cause.

• Advocates can also take action against a bad bill. Use press releases, a petition, an in person meeting, and other communication tools to ask the governor to veto the bill.

“Talk with your representative and share your story often – two keys to successfully cultivating champions. A representative from the House spoke on behalf of our cause on the floor even though I only remember just meeting him at a breakfast I held. I am still surprised about this but it goes to show you never know who will be interested in your cause and become a champion for you when it matters.”

-SHARON KING, PRESIDENT, TAYLOR’S TALE

RARE Community: Tips for Success

Nicole Dryer, PKU Parent Advocate

Nicole’s son was diagnosed with Phenylketonuria (PKU), a metabolic disorder. His disorder is the reason she is a rare disease advocate. PKU requires medical formulas and a strict diet, which Nicole was able to receive for her son through the hospital and its funding program.

Unfortunately, as funding decreased this benefit was moved to insurance with some additional barriers and challenges. These new obstacles motivated Nicole to drive change for her and her community. Nicole, along with other advocates and supporters, looked to reform the current bill where the coverage cap for medically necessary food would be raised. With a supportive team and a clear goal in mind, Nicole found success on a state level and continues to work for change on the national level.

“I started my journey in advocacy because I had to fight for my son and I had to figure something out for him. I reminded myself on the journey that I had to keep fighting to give my son and others like him a voice. As a parent you don’t ask for this and you feel out of control; but advocating for him gave me some control back. I felt empowered that I can do that for him.”

-NICOLE DRYER, PKU PARENT ADVOCATE​​​​​​​

Sharon King, Batten Disease Parent Advocate, President, Taylor’s Tale

Sharon co-founded Taylor’s Tale in honor of her daughter, who was diagnosed with Batten disease in 2006. The organization funds groundbreaking research and supports all rare disease patients through legislative action. Sharon was the catalyst for the passage of Taylor’s Law, North Carolina legislation that established a state-level advisory council for rare disease housed within the University of North Carolina School of Medicine. Sharon’s determination and her ability to bring this cause to life for others outside the rare disease community made her successful in her advocacy efforts.

“When I was advocating, I chose to advocate for the rare disease community as a whole. I used Taylor’s story as a way to make this community feel real. But I didn’t want my story to be a sob story or just another example of a family fighting the system. I wanted to show, with Taylor’s story, how many people really exist in this community and everyone that it affects.”

-SHARON KING, BATTEN DISEASE PARENT ADVOCATE, PRESIDENT, TAYLOR’S TALE

“Who’s Who” in Your State’s Politics​​​​​​​

Advocate: This is you! The person who is supporting, recommending, or defending your cause or policy.

Assembly Member: Any member, representative, or delegate of the legislature in states that have a Legislative Assembly.

Committee Chairperson: The person who presides over the legislative members assigned to particular legislative issues. In most cases for rare diseases it would be a Health Committee.

Conference Committee: A committee, composed of members of the majority and minority parties according to the demographics of the legislature, assigned to resolve disagreements between the two houses of the legislature.

House or Senate Clerk: An officer who keeps records and organizes affairs for the state House or Senate.

House Delegate: Any member of the legislature in states that have a House of Delegates.

House Member: Any member of the legislature in states that have a House of Representatives.

Legislator: The person elected to represent you in your district or state that makes the laws as part of the legislative body.

Legislature: Elected officials who make, change, and repeal laws for your state.

Governor: Elected official in charge of the executive branch of government in your state.

Ranking Members: The second-most senior member of a legislative committee. This term is often also used to refer to the senior-most member of a legislative committee from the minority party.

Representative: Elected official who acts or speaks on your behalf in a House of Representatives. This term can be used in both the state and federal legislature.

President of the Senate: Title given to the organizing officer who oversees the Senate.

Senator: Elected official who acts or speaks on your behalf in a Senate. This term can be used in both the state and federal legislature.

Speaker of the Assembly: Title given to the organizing officer who oversees the State Assembly.

Speaker of the House: Title given to the organizing officer who oversees the House of Representatives.

Speaker of the Legislature: Title given to the organizing officer who oversees a unicameral state legislature.

House Names by State

Resource Guide

Finding your local legislators, bills, reports, votes, etc.:

• The Library of Congress http://bit.ly/SLW-Library-of-Congress

• National Conference of State Legislatures http://bit.ly/NatCongressStateLegislatures

• Open States http://www.openstates.org Watch live broadcasts or webcasts of your state legislature:

• National Conference of State Legislatures http://bit.ly/NCSL-Broadcasts General information of governors and update on policy and issues in the US:

• National Governors Association http://www.nga.org/cms/govstaff Publications on policies and advocacy stories, opinions and updates:

• National Health Council – Medical Innovation http://bit.ly/NHC-Medical-Innovation

• National Health Council – Publications http://bit.ly/NHC-Publications

Why Advocating at the Federal Level Matters​​​​​​​

Inside-Outside Voice

When children use their playground “outside voices” indoors, a teacher may admonish them to use their less headache inducing “inside voices.” Like children on a playground, Capitol Hill is a place where it is appropriate to use your outside voice. Legislative history suggests that the way funding is distributed amongst different topics and priorities, often depends on who has the loudest voice and is causing the most headaches.

If other members of Congress are not getting a headache about a problem, it’s unlikely that your representative is aware of it and, consequently, its need for funding. This is why you may have to use your outside voice or a bullhorn to educate your members about RARE legislation that affects you.

And because they are uninformed about the complex legislative or regulatory issues that patients in the rare disease community face, your representatives may assume the problem isn’t big enough to merit attention or buying a barrel of aspirin from Sam’s Club to cope with.

“When I was on The [Capitol] Hill, no one came in and talked to me about rare diseases, I worked on the Hill a long time and never once dealt with a rare disease group. If no one out there talks about it, no one knows what’s going on. Members on the Hill are in a bubble. They can’t focus on anything unless you make them focus.”

-JENNIFER BERNSTEIN, EXECUTIVE VICE PRESIDENT, HORIZON GOVERNMENT AFFAIRS

Remember, your elected officials are there to represent you. They want to hear from constituents and understand what issues matter to them. That is their job and being responsive to constituents is how they keep their jobs. They are in Washington to work for you.

Rare disease patients and their families are in a unique position to tell their powerful stories and to affect change. Unlike many of the people who call on representatives, rare disease families and patients have a high level of credibility, and their stories are capable of moving lawmakers to take action.

Through advocacy you have the power to help direct funding to where it is needed or to enact laws that can change the lives of rare disease patients. Although the legislative process can sometimes take a long time, it is important to stay the course. Know that each meeting you have makes your policymaker more aware and more knowledgeable of rare diseases, and that’s a big deal!

The Difference Between Federal & State Policymaking​​​​​​​

From a practical point of view, there’s not a lot of difference in dealing with lawmakers at the state and federal levels. Depending on the state in which you live, state legislatures may be full or part-time, but federal legislators are full-time. Nevertheless, it is important to determine whether your issue should be handled at the state level or the federal level.

Either way, you are the expert on your rare disease and building relationships with both your state and federal policymakers before you need their help is important. And consistent communication is key at both levels of government. There can be a difference in the time it takes to draft, pass, and enact a piece of legislation. Historically, It can take years to move a bill through the process and into law at the federal level; so be prepared to dig deep into your reservoirs of patience and persistence as you move through the process.

Understanding the Federal Process: How a Bill Becomes Law

Rock Star

Jean uses Schoolhouse Rock’s “I’m Just a Bill” episode to explain to Charlotte, mommy’s work as an advocate. While Charlotte doesn’t really understand it, the iconic video has street cred for teaching generations of American children how a bill starts out as an idea, before it becomes a scroll of paper, rapping and chillin’ on the steps of Capitol Hill, with aspirations of being a music video star.

And who knew?! Years after Schoolhouse Rock’s beloved video, Vox Productions created “How a bill really becomes a law: What Schoolhouse Rock Missed.” The Vox video includes explosive details that Schoolhouse Rock overlooked about bills seeking fame, fortune, and approval on Capitol Hill.

There are several stages of debate, revision, and voting before a bill becomes a law. Jennifer Bernstein, executive vice president, of Horizon Government Affairs, offered this overview:

Drafting

An idea is generated in the form of a bill. Ideas can come from anywhere—lobbyists, Political Action Committees (PACs), grassroots political movements, or citizens. Anyone may draft a bill; but only members of Congress can bring legislation to the floor and those who do become a sponsor.

A member of Congress (either a senator or a representative) chooses to sponsor the bill.

The Advocate’s Role 

Before approaching members of Congress to sponsor your bill try to get community support in the form of letters or from patient organizations. Going in with community support can make it easier to show that the issue is important to the community.

Referral to a Committee

The bill is introduced on the floor of either the House or Senate, where it is referred to an existing committee or subcommittee. Most issues relevant to the rare disease community are under jurisdiction of the House Energy and Commerce Committee or Senate Health, Education, Labor and Pensions Committee.

Every couple of years, the members of these committees may change (with each election, a shift may occur), so make sure you are aware of the possibility of these changes while your bill is being reviewed. Once the bill is in a committee, it is placed on the official calendar. After review, passage will be determined. The committee may defer, amend, or vote on the bill.

The Advocate’s Role 

Regardless of which committee hears the bill or which congressional office supports your bill, you may not get movement on the bill unless you can show how the cost associated with the legislation will be covered. Find ways to offset the cost of the bill, so it is cost-neutral, before or during its passage through Congress to become a law.

Subcommittee Review

Bills can be referred to a subcommittee for a hearing. During a hearing there is an opportunity to put views on record. The views and testimony of experts, public officials, supporters, and opponents can be submitted in person or in writing.

Mark Up

Once the hearings are complete, the subcommittee may meet to make revisions and amendments before recommending the bill to the full committee. The bill can die if the subcommittee votes to not report the legislation to the full committee.

Committee Reports a Bill

Once the bill is received from the subcommittee, the full committee can have further hearings or vote on the recommendations of the subcommittee. Then the full committee votes on its recommendations to the House or Senate.

Publication of a Written Report

Once a bill is voted on to be reported, staff members prepare the report. The report details the bill’s intent and scope, impact on existing laws and programs, position of the executive branch and the views of the dissenting members of Congress.

Scheduling Floor Action

The bill is then reported back to the originating chamber and is placed on the calendar.

Debate and Vote

If the bill returns successfully from the committee or subcommittee, the Senate and the House will debate the bill separately, offering amendments and casting votes. If the bill is defeated in either the House or the Senate, the bill dies. It can get reintroduced, though, as soon as the new Congress starts.

Referral to Other Chamber

Following the passage by the House or Senate, the bill is passed to the other chamber, where it follows the same route from committee to floor action. The bill may be received, rejected, ignored, or changed.

Conference Committee

If significant changes or alterations to the bill occur by the other chamber, a conference committee is formed to reconcile the differences. If unable to reach a compromise, the legislation dies; but if they agree a conference report is prepared with recommended changes. Both the House and Senate must approve the conference report for the bill to move forward.

Final Actions

If a conference report occurs and is approved by the House and Senate, it is sent to the president to sign or veto the legislation. If the president does not sign after 10 days, it can become a law without the president’s signature; but if Congress adjourns during the 10-day period, the bill is pocket vetoed and will not become a law.

Overriding a Veto or Becoming a Law

If the president approves the legislation, the bill becomes a law. The president can also veto the bill. If the president vetoes the bill, Congress can override the veto if at least two-thirds of the House and Senate vote to do so. 

What’s Happening in Government

The In-Crowd As an advocate, you want to be in the know about government doings. Unless you desire a life of intrigue, getting intell about legislation does not, usually, require wearing a black trench coat and giving unmarked currency to a stranger on a park bench.

Thanks to the Internet, most advocates can catch up and stay current with what’s happening in state and federal legislative matters while seated on a comfy sofa at home instead of a park bench. Fortunately, there is a wealth of resources online that you can use to stay in the loop about issues related to your cause.

It’s a good idea to bookmark agency websites (like Department of Health) and sign up for any newsletters they offer. Listed are a few suggestions of the types of websites that make staying current on government legislation easier:

• Follow nonprofits!

• Follow news outlets!

• Follow legislators on social media!

• Google Alerts!

Understanding what is happening with federal legislation and on Capitol Hill can make you a more qualified spokesperson, caregiver/patient, and advocate. When you don’t know the policy change landscape, it can be hard to understand how to get the help you need and to know what programs and services, and clinical trials exist. AND knowing what is happening on The Hill makes you an expert on the issues, which is how you want lawmakers to think of you. As your relationship with them evolves, they may even reach out to you for your opinion and advice on policy efforts!

“The man who wishes to keep his respect for sausages and laws should not see how either is made. With reference to the laws, a knowledge of how they are made may increase our respect for them and their makers; and if it does not, we are at least able to express our dissatisfaction in an intelligent manner.”

-OTTO VON BISMARCK

My Rare Disease Week on Capitol Hill

Janet Mills, CADASIL Patient Advocate, cureCADASIL.org

What were you lobbying for? And what goal did you want to achieve on The Hill?

I was lobbying for continued funding for the NIH and other government supported programs that can help with treatments for all rare diseases, including my own of CADASIL. I also asked my House representative to join the Rare Disease Committee. She said she would consider it.

What was successful for you in DC?

I learned that I can effectively tell my rare disease story in a short amount of time, and advocate for all rare diseases with legislators. Before this, I was unsure how I would feel doing this. I wanted to share facts and a compelling story while trying not to cry. I did get emotional, but I was able to control it enough to get my messages across.

If you could have been given any advice before going to DC your first time, what advice would you have liked to hear?

Ask to be paired with someone who has experience in lobbying. Plan what you’re going to say in a short amount of time. Then speak with confidence. You DO know what you’re talking about!

Any tips or advice for first-timers?

Be sure to send a thank you acknowledgment to the legislators with whom you met. They will appreciate it and will more likely remember you.

Why is important for advocates to lobby on the federal level?

I believe it is vital for our state senators and representatives to hear from their constituents in person. Once you get to know them, your cause is more likely to be viewed as important to them as well. I hope to go to DC again, as there are only a few people in the state of Wyoming who can or will go.

Federal Legislative Glossary

Appropriations bill: In order for the government to spend money on a specific program created in a piece of legislation, it must authorize the funding for it through an appropriations bill. It’s not enough to get a program enacted. Money must be allocated for it to operate.

Authorization bill: This is legislation that establishes or calls for the continuation of a program, sets the parameters under which it operates, and specifies how funding for it will be used.

Budget resolution: This is created each year to describe, in broad terms, a framework for the various parts of the budget.

Caucus: A caucus is a group of members of the House, Senate, or both who share a common interest in a specific issue and who meet to discuss ways to address that. There is a rare disease caucus that involves member of the House and Senate. You should check to see if your representative is a member ahead of meeting with your representative or the representative’s staff.

Cloture: In the Senate, there is no limit on debate. However, if at least 60 members vote on cloture, it can end a debate and bring a matter to a vote.

Conference committee: This is made up of appointed members of the House and Senate to resolve differences between versions of a bill passed by both chambers. Once resolved, the final bill must be passed by each chamber.

Co-sponsor: A Senator or representative who adds his or her name to the list of supporters of a specific bill.

Fiscal Year: The United States government operates, from a financial point of view, on a year that begins October 1 and ends September 30.

Mark-up: This is the process of a committee or subcommittee reviewing, debating, amending, and voting on a bill. Once it passes out of this process, it goes to the floor of the House or Senate for a full vote. Scoring: A process conducted by the Congressional Budget Office to determine the fiscal impact of a piece of legislation.

Resource Guide​​​​​​​

The Congressional Record http://bit.ly/CR-DailyDigest Provides a daily digest of the proceedings of the House and Senate. You can use this website to find comments on the floor made by your representative.

House.gov http://www.house.gov/ The website of the U.S. House of Representatives. It provides links to committees, members, and legislation.

Senate.gov http://www.senate.gov/index.htm The website of the U.S. senate. It provides links to committees, members, and legislation.

The Library of Congress https://www.loc.gov/ A rich resource of information. You can use this website to access Congressional Research Service Reports on pending legislation. These are unbiased analyses that in the past were available only to congressional staff.

Federal Register https://www.federalregister.gov Is billed as the “daily journal” of the United States government. It provides a way to track proposed regulations and to learn about public hearings and opportunities for public comment. Information is organized by major topics and includes an area on health and public welfare where issues pertinent to the rare disease community would likely appear.

Congress.org http://bit.ly/VisitingCapitolHill Has an advocacy section that provides a useful introduction to first-time advocates. Although it is written for a broad audience, members of the rare disease community will find it a useful resource.

The Hill http://thehill.com/ Is a publication covering the daily developments of national politics with a special eye on policy. Politico www.politico.com Is a publication about the national political scene with a focus on the politics driving the issues and the players.

Federal Register https://www.federalregister.gov Provides a way to track proposed regulation. Information is organized by major topics and includes an area on health and public welfare where issues pertinent to the rare disease community would likely appear.

The Capitol.Net http://thecapitol.net/ Provides knowledge on the legislative and executive branches of government and how to work with them. This site is a great resource of terms and glossaries for the first-time advocate.

Congress.gov http://congress.gov Includes the text of bills, as well as where they are in the legislative process. At this website you can also gain access to the Congressional Record (https://www.congress.gov/congressional-record#daily-digest-houseof-representatives), which provides a documentation of the proceedings of Congress, including remarks made by your representative. You can also use this resource to find your congressional representative or senator’s website, as well as track the activity of individual committees. Each member of the Senate and House of Representatives maintains their own websites. Their websites are an easy way to learn about your representatives and to track your members’ legislative activity.

House Energy and Commerce Committee https://energycommerce.house.gov/ Is one committee that rare disease advocates will want to follow. This committee is responsible for overseeing health related legislation including matters that concern the National Institutes of Health and the Food and Drug Administration. A link on the home page allows you to sign up for email updates from the committee.

The Senate Committee on Health, Education, Labor & Pensions http://www.help.senate.gov/ Is the counterpart to the House Energy and Commerce Committee in that health-related legislation would likely begin its life here. The website offers agendas, legislative summaries, information about hearings, and more.

Rare Disease Legislative Advocates http://rareadvocates.org/ This resource provides information and news about rare disease legislation, a list of members of the rare disease caucus, and a rare disease scorecard on the voting records of members in the House and Senate.

Google https://www.google.com It’s easy to forget about the power of Internet searching, but Google is very reliable for finding information about your representative or about a particular piece of legislation. Remember to make use of this popular resource.

Video Resources

Schoolhouse Rock: I’m Just A Bill http://bit.ly/SchoolhouseRock-Bill A child-friendly, animated video that explains in very basic terms how a bill becomes a law.

Vox: How A Bill Really Becomes A Law: What Schoolhouse Rock Missed http://bit.ly/VOX-SRMissed A animated breakdown of the classic Schoolhouse Rock: I’m Just a Bill cartoon that lays out more details of how a bill becomes a law on the federal level.

Creating and Facilitating Peer Support Groups – Community Tool Box

https://ctb.ku.edu/en/table-of-contents/implement/enhancing-support/peer-support-groups/main

Section 2. Creating and Facilitating Peer Support Groups

CHAPTER 21 SECTIONS

Learn how to bring together and facilitate support and encouragement among a group of people who share common problems and experiences.

Portions of this section adapted from The Self-Help Leader’s Handbook: Leading Effective Meetings by Adrienne Paine-Andrews, Yolanda Suarez-Balcazar, Stephen B. Fawcett, and Leslie Borck Jameson, with the collaboration of Melody G. Embree, published by the Research and Training Center on Independent Living at the University of Kansas.

  • WHAT ARE PEER SUPPORT GROUPS?
  • WHY CREATE AND FACILITATE A PEER SUPPORT GROUP?
  • WHO CAN BE SERVED BY PEER SUPPORT GROUPS?
  • HOW DO YOU CREATE A PEER SUPPORT GROUP?
  • HOW DO YOU FACILITATE A PEER SUPPORT GROUP?
  • TIPS ON KEEPING A PEER SUPPORT GROUP GOING
  • TIPS ON HANDLING DIFFICULT GROUP MEMBERS

Did you know that there are over 500,000 support groups in the United States? Because they are both inexpensive and effective ways to offer assistance to people dealing with a variety of concerns, support groups have become a common method of serving the needs of people who are experiencing problems in their lives.

Support groups can be found in big cities, small towns, and even rural areas, dealing with anything from substance abuse and gambling addiction to surviving domestic violence to gender issues. 

If your group or initiative does service work with people who might benefit from talking to others who have similar experiences to their own, perhaps you should consider adding a peer support group to the services you offer.

WHAT ARE PEER SUPPORT GROUPS?

Support groups – also often referred to as self-help groups – are groups of people who gather to share common problems and experiences associated with a particular problem, condition, illness, or personal circumstance. In a support group, people are able to talk with other folks who are like themselves – people who truly understand what they’re going through and can share the type of practical insights that can only come from firsthand experience.

Some of the common characteristics of support groups include:

  • They are made up of peers – people who are all directly affected by a particular issue, illness, or circumstance
  • They usually have a professional or volunteer discussion leader or facilitator
  • They tend to be fairly small in size, to better allow everyone a chance to talk
  • Attendance is voluntary (although sometimes people are required to attend support groups by employers or the court system, especially if criminal or destructive behavior has been involved)

WHY CREATE AND FACILITATE A PEER SUPPORT GROUP?

There are many benefits to peer support groups:

  • When someone doesn’t know many – or any – other people who are going through what he is coping with, he can feel isolated and stigmatized. Support groups help people with a problem or illness feel less alone and more understood.
  • Support groups don’t cost much to run – advertising for the group and maybe some refreshments are all you’ll probably need to pay for. Another cost might be meeting space, but you can usually get someone to donate it.
  • Support groups empower people to work to solve their own problems.
  • Members can share information, keeping one another up to date on news of interest to them.
  • Among people who are experiencing similar problems, there is a unique emotional identification that is different from the type of support that can be gotten from professionals.
  • Members act as role models for each other. Seeing others who are contending with the same adversity and making progress in their lives is inspiring and encouraging.
  • A support group is a safe place for someone who needs to talk about intensely personal issues, experiences, struggles, and thoughts.
  • Talking to a counselor or doctor can be very intimidating for some people, because those relationships tend to place more power with the professional. In a support group, members are equals; this can make people feel much more comfortable opening up about their problems.
  • Talking to others in support groups reduces anxiety, improves self-esteem, and helps members’ sense of well-being overall.

WHO CAN BE SERVED BY PEER SUPPORT GROUPS?

Almost anyone! At any given time, over 6.25 million Americans are using self-help groups, and about 15 million have participated in such a group at some time in their lives. Support groups are used to address a myriad of concerns, such as:

  • Diseases, injuries, or chronic medical conditions
  • Eating disorders
  • Sexual identity questions
  • Physical disabilities
  • Bad or unhealthy habits
  • Emotional problems
  • Addictions
  • Bereavement
  • Parenting

Besides serving people directly affected by a problem, support groups often welcome family members or friends of those experiencing illnesses or difficulties. Also, many independent support groups exist just for family members or friends: for example, one such group is Al-Anon, a group for families and friends of alcoholics.

HOW DO YOU CREATE A PEER SUPPORT GROUP?

THINK ABOUT WHAT YOU WANT TO ACCOMPLISH

Decide what your group’s purpose will be and who you want to reach. You might find it helpful to write vision and mission statements for your support group.

FIND OUT WHETHER THERE ARE EXISTING NATIONAL, REGIONAL, OR LOCAL GROUPS YOUR GROUP CAN BE INVOLVED WITH

There are several benefits to setting up your support group under the auspices of a larger organization, if you can. A larger organization can often offer resources and assistance in setting up a new support group. The name recognition that comes with affiliating with a big, well-known organization can give your group more credibility. It can also make it easier for people who need your support group services to find you. Finally, working with a larger organization keeps you from having to “reinvent the wheel” in deciding how the group will operate – you can take advantage of a tried and true model.

Using a fictional example, let’s look at how someone might set up a support group with the help of a larger organization.

Yoshiko’s support group

Yoshiko’s sister was recently diagnosed with muscular dystrophy. Feeling frustrated and isolated, Yoshiko wanted to start a support group for the disease’s sufferers and their families. After carefully studying this section of the Community Tool Box, Yoshiko decided to find out whether the Muscular Dystrophy Association, a national organization, sponsored a support group in her town.

She visited the MDA’s website and found out that they offered a group in a nearby town, but there wasn’t one in her city. After Yoshiko called the organization’s national office and found out the many ways that they could help her new support group, Yoshiko decided to start a local MDA support group rather than an independent one.

CONSIDER WHETHER THE GROUP WILL MEET FOR A SPECIFIC PERIOD OF TIME OR FOR AN INDEFINITE PERIOD OF TIME

Support groups can be long-running, or they can be restricted for certain periods of time. For example, the local crisis center may offer a six-week support group twice yearly for people who have lost a family member to suicide, rather than a single, year-round group. This type of time-limited format is best suited to crisis situations, such as bereavement or divorce. A drawback of this format is that the group may not be available at a time that someone needs it. Problems that are more long-term in nature – a chronic disease, for example – are better served by ongoing, long-term support groups.

DECIDE WHETHER THE GROUP WILL BE OPEN OR CLOSED

Open support groups are those in which new members are welcome to join at any time during the life of the group. This may also mean that anyone can join the group – friends, family members, etc.

In closed groups, people are only allowed to join the group at certain times (e.g., for the first three weeks only) or under certain circumstances (e.g., groups that are only for women). Some organizations offer both types of meetings – open meetings, which anyone can attend, and closed meetings, which are only for people going through the program.

If you plan on working on a very specific issue and want the entire group to go through the process at the same time, you may want to consider having a closed group. However, open groups are best for most kinds of support groups.

SET A TIME AND PLACE FOR YOUR SUPPORT GROUP TO MEET

Decide on a time that will make it possible for the most people to be there; for example, if your group members are likely to be church-goers, it wouldn’t be a good idea to schedule meetings for Sunday mornings. Mid-afternoon on weekdays won’t be good for most people who work during the day. Usually, early evenings on weekdays are the best times for the most people.

Picking a good location is far more crucial than you might think. If you work with an organization or coalition that has meeting space of its own, you might want to have your support group meet there, but don’t automatically assume that this is the best space for it. You might find that a school, church, restaurant, library, or some other public building is better suited to your needs. Depending on the type of group, members may want to be discreet about their attendance, and may therefore be less likely to come if the group meets in some heavily-traveled place where they might be seen. A support group for former child molesters might want to be as nearly invisible as possible, for instance. While that’s a particularly outrageous example, the same might be true for Al-Anon or a group for pregnant teens.

First and foremost, the location should be easily accessible for the people who will be coming to the support group. Is the building in an easy place to find? Is it accessible to people who use wheelchairs, canes, or service dogs? Is there adequate parking nearby?

The location should also be somewhere where people can feel comfortable enough to talk about their problems and able to offer each other support. If you’re working with survivors of violent crimes, meeting in a high crime section of town or next door to the county jail might make people in your group uneasy or reluctant to even show up.

While the location you decide on should be accessible and comfortable, it also needs to fit the type of group you want yours to be. For example, meeting in a member’s home can add an element of comfort, but groups are much more accessible to newcomers if held in public places; therefore, meeting in somebody’s home should probably only be done if it’s a closed group.

When you finally have a location picked out, make any needed room reservations or other arrangements, and you’re ready to move on!

SELECT A GROUP LEADER OR FACILITATOR

Picking the right person to lead your support group is of utmost importance. The group leader or facilitator opens and closes the meetings, sets the tone for the discussion, helps members learn how to listen and offer support to each other, and deals with any problems that come up during the meeting. The ideal facilitator will possess the following qualities:

  • Flexible schedule: He should have enough time to perform the required tasks and commit to be there for every meeting.
  • Lots of energy: He should have a positive attitude, be in generally good health, and be able to work after hours if necessary.
  • Ability: Ideally, he should have experience in facilitating such groups. He should also be responsible, articulate, fair, organized, and able to work well with others.
  • Support: Your facilitator needs to have access to needed resources to run the group (a phone, a car, etc.), and people he can rely on for assistance, if necessary.
  • The desire to do the job: He should have an interest in the topic or at least a commitment to helping others. It helps if the facilitator has some sort of affinity for the group and its topic. For example, if your support group is for survivors of breast cancer, then a good facilitator might be someone who has survived breast cancer herself, has been close to someone who experienced it, or at least has had similar experience with other types of disease. This isn’t to say that people who haven’t been personally touched by the topic can’t be great facilitators. You might try folks who have done a lot of volunteer work or have an interest in counseling, such as a graduate student in social work or counseling psychology.

The details of the facilitator’s job – running the meetings – are explained later on in this section; you may wish to refer to that when selecting somebody for the position.

DECIDE ON ANY REMAINING DETAILS

Going back to step one, think about what you want this group to be like. This can help you make up your mind about whatever other ins and outs of the group are left, such as:

  • How often should we meet? Most support groups meet every week or two.
  • How long should meetings last? Most support groups meet for between one and two hours; you may want to have shorter meetings if you end up having a small group or if members’ physical problems make sitting through a long meeting uncomfortable.
  • Should we serve refreshments? Refreshments help make everyone feel at home and encourage socializing among members; unless they aren’t allowed by your location or you run a group that focuses on food issues (such as an overeaters or eating disorder groups), it’s a good idea to have refreshments. If you’re on a strict budget, you may have to be creative to get it set up. People can take turns providing cheap refreshments, with some discreet help if someone simply doesn’t have the resources to do so. Or perhaps someone knows a merchant or restaurant who has some connection to the purpose of the group, and would be willing to donate refreshments.

RECRUIT MEMBERS FOR YOUR SUPPORT GROUP

Consider how large you want the support group to be before you start recruiting. Generally, it’s best to have a group that’s large enough to function well even when some of the members are absent, but small enough for all the members to feel comfortable. As a rule, 5 to 15 people is a pretty good number; anything larger too easily becomes unmanageable and impersonal.

There are many ways to get the word out about your group, and the most successful support groups usually use some combination of all of them.

Use referrals

  • Network with other groups and professionals in your area. Let local clergy, doctors, administrators, agency directors, social workers, media personnel, nurses, and other such people know about your group, and encourage them to tell people about it. Send out letters and, if you have them, brochures or flyers to the offices of local organizations that address your group’s area of concern — e.g., the local mental health agency or chapter of the American Cancer Society. You might also do presentations to some agencies and organizations
  • If your city or county has any community information and referral hotlines, be sure that they have information on your support group
  • If the support group is related to a health matter, be sure to send information to your local hospital’s social services and community health education departments
  • Find out which agencies or organizations publish community or social service directories and request that your group be included in the next one

Use the media

  • Posters and flyers: These can be posted at clubs, shops, hospitals, churches, libraries, schools, post offices – just about anywhere that you think interested people might see them
  • Press releases: Sending information about your support group to the local press might interest them in doing stories on your group, which can generate interest
  • Paid advertising: Ads in the local newspaper, as well as those in publications or newsletters put out by agencies or businesses that reach the same folks you want to are a good idea, if you can afford them.
  • Letters to the editor: These can be used to tell the public about your group. They’re more likely to be printed if they’re in response to a story the paper has published about a related topic
  • Public service announcements: Getting these aired on local radio or television stations can get the word out to large numbers of people

Use personal invitations and word-of-mouth

  • This is the most informal method of recruiting people for support groups, but it’s the most effective. The “people chain” happens when one person tells another person about a group, and then that person tells another, and so on. Tell everyone you can about the group, and ask them to tell others. When your group starts meeting, encourage members to tell others about the support group.

Once you have enough members, contact them to let them know the date and time of the first meeting. Give them a couple of weeks’ advance notice so they can make any necessary adjustments in their schedule, and follow up with a postcard or telephone reminder a few days before the meeting.

HOW DO YOU FACILITATE A PEER SUPPORT GROUP?

You’ve put in a lot of hard work in preparing for your support group to begin, and now the day has arrived. If you are the group’s facilitator, here are some helpful guidelines for running these meetings.

PREPARE YOURSELF FOR THE MEETING

Take a few minutes to think about possible topics for discussion. If this isn’t your first meeting, review the topics that were talked about last time. Go over any notes you took. This can help you remember to bring up things that members might want to revisit or give updates on. If you plan to make any announcements of community events or activities that may be of interest to the group, make sure you have them ready.

PREPARE THE ROOM FOR THE MEETING

Arrive 20 to 30 minutes early to arrange the room. Put the chairs in a circle large enough for latecomers to fit in, with enough room for folks who use wheelchairs to easily join. If you’re going to have refreshments, set them up on a table to the side or back of the room. If you’re going to use name tags, have them ready. Have a pen and paper to take notes.

START THE MEETING

As people begin arriving, be sure to make eye contact and say hello, greeting them by name if you’ve met them before. Call the meeting to order on time, or at least within five minutes of the designated time. This encourages other members to be prompt. It also rewards those who are punctual; if you always start the meeting late because you’re waiting for that one person who shows up 15 minutes late every time, you risk alienating those who made the effort to be there on time. A simple “Let’s get started,” or “Well, it’s five minutes after seven o’clock, why don’t we begin the meeting,” is adequate.

GIVE PRELIMINARY INTRODUCTIONS AND INFORMATION

Introduce yourself briefly; if you have some experience with the group topic, be sure to mention it. Make any announcements and ask the group if they have anything to add.

Opening a support group meeting

At the first meeting for Yoshiko’s MD support group, she was pleasantly surprised to see that 15 people showed up. Opening the meeting, Yoshiko introduced herself: “Hello everyone. My name is Yoshiko Hatori and my sister Miho has been living with muscular dystrophy for over a year now. I’m happy to see so many of you came tonight.”

She had only one announcement: “By the way, there’ll be a car wash fundraiser for the local chapter of the MDA next Saturday from noon to four p.m. at First Baptist Church, so tell as many people as you can about it.”

If this is a new group or there are new members present for the first time, explain the ground rules. The most common ground rule for support groups is that everything discussed in the group must be kept confidential. Reminding the group of this from time to time is very important. Explain whether the group is open or closed and what that means. Be sure that everyone understands the rules.

Have everyone introduce themselves, stating their names and a little bit about why they were interested in the group. Then begin the discussion, either by touching on something that was mentioned by one of the members or by bringing up a prepared topic.

Starting a discussion

When members of Yoshiko’s group were introducing themselves, one young man named Brian mentioned that his family was planning a trip to the Rockies and that he was concerned about his ability to withstand the higher altitudes. She had planned to talk about family issues in general, but Brian’s comment gave Yoshiko an idea. When introductions were finished, she began the discussion this way:

“Brian, you mentioned your apprehension about this upcoming family trip. Could you tell us more about your concerns?” After the group discussed Brian’s trip for a while, Yoshiko said, “I found that Christmas with my family was overshadowed by Miho’s MD diagnosis. We were all worried about her, and it really made it hard to just enjoy being together as a family. Would anyone like to talk about what effect MD has had on their own family gatherings?” This prompted several members to jump into the discussion.

ENCOURAGE MEMBERS TO LISTEN TO EACH OTHER

Being a good listener – and acting as an example to group members in this regard – means being an active listener, one who is obviously listening and understanding what is being said. How do you let people know that you’re listening?

  • Body language (leaning slightly towards the speaker, not fidgeting)
  • Eye contact (looking in the speaker’s eyes, not looking around the room)
  • Brief encouraging statements, also sometimes called nonverbal encouragers (“Uh-huh” or “Mmm-hmm”)
  • Nodding
  • Repeating or rephrasing the speaker’s last phrase to let him know you understood. (“I can’t believe my mother was so cold about it,” could be responded to with, “So you were really hurt by what your mother did,” for example)

ENCOURAGE MEMBERS TO OFFER SUPPORT TO ONE ANOTHER

While being supportive yourself, you must also help others in the group learn how to be so as well. Demonstrate the active listening skills listed above while the member is speaking. Wait 10 seconds or so and then, if no other members have done so, offer support. Group members will usually pick up on this and start offering support themselves. If they don’t you may have to ask them questions about how they are affected by the discloser’s experience.

For example, Yoshiko might say the following things in her group:

  • “Shawna, what can you say to Brian that might help?”
  • “How can we give Brian some support now?”
  • “What do you think about what Brian is going through, Annie?”

ENCOURAGE MEMBERS TO TALK ABOUT THEMSELVES

One advantage of support groups is that they can create an atmosphere in which members feel comfortable talking about and working through very personal issues and experiences. Disclosure – the act of revealing personal information – gives other members a chance to offer support, ideas, and assistance. It also encourages other members to share their own experiences and fosters an atmosphere of trust in the group. To maintain that trust, facilitators may find that they also need to disclose information from time to time.

When a member discloses information, the facilitator may have to guide the discussion to make the member comfortable or encourage others to join the discussion. Asking open-ended questions – those which cannot be answered with a simple “yes” or “no” – is very useful at this point.

Asking open ended questions

Camilla, a single mother in Yoshiko’s support group, talked about how hard it’s been for her to take care of her three children over the past few months. She was having a hard time expressing herself, so Yoshiko coaxed her with these open ended questions:

  • “What’s it like for you when you’re trying to get your kids ready for school in the morning?”
  • “What have you told your children about what’s going on with your health right now?”

Yoshiko wanted to get other members to offer support, and she wanted to use Camilla’s disclosure to encourage further disclosure from other members.

She asked the following open-ended questions:

  • “What sorts of things in your own lives make you feel the way Camilla feels about this?”
  • “How do you all manage it when you have to be a caretaker for others while dealing with your own illness?”

You can also plan topics ahead of time. Some support groups do things like have their members do reading or keep journals of their experiences to help spark discussion.

OFFER SUPPORT

This is the main reason your group exists! Fortunately, offering support is one of the simplest things to do in the course of running a support group. Giving members support can help them realize that reaching their goals is possible, give them hope, or just let them know that you empathize with what they’re going through.

Support consists of making statements that show your understanding, sympathy, and concern. Listen for the feelings expressed by the member, and address those feelings. Support can also be expressed through body language (such as making eye contact or smiling) or touch (hugging, patting the member’s arm). Care should be taken in using touch as a form of support – in some circumstances, such as a support group for survivors of child sexual abuse, touch may be threatening and uncomfortable instead of comforting.

Usually, members will offer support to each other on their own, or they will quickly pick up on how to do so by following your example. However, you may have to ask questions to coax them into offering support by asking questions.

Providing support

When Brian said, “I feel bad because I think I’m becoming a burden to my family,” Yoshiko could have offered support by saying:

  • “I know things are really tough for you, but I hope you can take some comfort from how much your family obviously loves you,” or
  • “I’m sorry to hear that. But I know that I don’t mind the extra time I put into taking care of my sister since she’s gotten sick – as a matter of fact, I really cherish that we’ve been able to spend more time together. You might find that the same is true for your family.

Yoshiko could also encourage other members to offer support by saying:

  • “How can we support Brian now?”
  • “Has anyone been through similar experiences with their families?”

HELP MEMBERS SOLVE PROBLEMS

While solving problems shouldn’t be the only goal of a support group, it is something that many members hope for and expect. All members should take part in the problem -solving process so that no single person is seen as the solution to their difficulties. It’s the facilitator’s job to help members learn how to help each other with problem solving.

Here are the steps to problem solving:

  • Clarifying the problem: Make sure everyone fully understands the problem. If you aren’t sure what the problem is, ask questions to get more information.
  • Talking about the alternatives: Bring up possible solutions to the problem, but be very careful to word them in a way that doesn’t give advice. For example, instead of “You should do this,” a better wording could be “I wonder what it would be like for you to try this” or “Maybe you could do this.” Telling people what to do is not the purpose or responsibility of a support group. It takes away a person’s feeling that he can handle his own problems and can make people feel attacked and uncomfortable. Try asking members to tell what’s worked well for them in similar situations. You can also ask the person with the problem what he thinks might work.
  • Choosing which option(s) to take: Have the group discuss the pros and cons of each suggestion. You can then let the person with the problem come to a decision, or he may want to take some time on his own to consider the possibilities. Let him know that the group cares and wants to know how things turn out.
  • Offering help: Sometimes members may offer to assist each other. For example, if the problem being discussed is a member’s problems with transportation to the meetings, other members might offer to give that person a ride.

Problem-solving

Clarifying the problem:

Yoshiko asked some questions to find out more about Camilla’s problem:

  • “What parenting duties do you find to be the hardest to keep up with?”
  • “Do you find that these things are consistently hard to get done, or is it more difficult at particular times?”

Talking about the alternatives:

Yoshiko used open ended questions to gently make suggestions and get members to offer them as well:

  • “What would it be like to ask your kids to help out with chores around the house?”
  • “What has helped you get through hectic times with your kids in the past? “
  • “Would any of you like to suggest things Camilla could do to make things run more smoothly around her house?”

Choosing which option(s) to take:

Camilla’s problem centered around transportation (getting her kids to and from school and soccer practice) and household chores. Camilla decided on the following solutions:

  • Another member’s children were part of the same soccer team, so she offered to let Camilla’s children ride with them to and from practice
  • One member’s sister had children at the same school as Camilla’s children. She offered to call her sister and arrange for Camilla’s children to carpool with them to school in exchange for help with gas money.
  • Another single mother in the group shared some ideas on using incentives to get her children to help out more with household chores that Camilla decided to try

Offering help:

As you can see above, two of the three solutions that Camilla decided on involved help from other members.

CLOSE THE MEETING

Most support group meetings last between an hour and two hours. If the group is caught up in a particularly intense discussion or in helping a member solve a problem, you might go a few extra minutes, but generally it’s best to stop before everyone is tired and eager to leave. When the discussion is winding down or when a previously agreed-upon ending time has arrived, wrap things up. Here are some ways you can close the meeting:

  • Make a summary statement: Summarize the topics that were discussed and alternatives that were chosen. Highlight any positive observations or solutions that came up.
  • Ask for additional comments or questions: Check to see if anyone in the group has anything to add.
  • Remind members about the next meeting: Let everyone know the time and place for next time.
  • Request volunteers, if necessary: If you need help with donations, refreshments, transportation, or other group needs, this is the best time to ask for it. Asking for help from members encourages them to take leadership responsibilities and fosters a sense of personal investment in the group’s success.
  • Give a final greeting: Thank everyone for coming, say goodbye, and encourage them to come again.
  • Make final notes: Shortly after the meeting, make some brief notes about what was discussed while it’s fresh in your mind. This information can be used to jump-start the next meeting. Keep any notes on the group in a safe place to insure confidentiality.

 Closing the meeting

After the discussion had wound down, Yoshiko followed the above steps in this way:

Making a summary statement:

“I see it’s getting to be about the time we’d agreed that we’d stop, and I know many of you would like to get home, so I think we’d better wrap up for the evening.”

Asking for additional comments or questions:

“We talked a lot about our families tonight. Are there any last thoughts anyone would like to add?”

Reminding members about the next meeting:

“Our next meeting will be on Wednesday the 23rd at 7:00 p.m. I hope you can all be there.”

Requesting volunteers:

“Can someone volunteer to call everyone on the phone list a couple of days before the meeting to remind them about it?”

Giving a final greeting:

“I’m so glad you all came, and I think we got into some really interesting subjects tonight. I hope to see you on the 23rd!”

Making final notes:

After she got home, Yoshiko sat down with a cup of coffee and wrote some notes on the meeting: “Brian talked about his concerns about how MD will affect his upcoming family trip; Camilla talked about how tough it is to be a single mom with MD. Next time maybe we should focus more on issues that affect the people who are single or not close to their families.”

TIPS ON KEEPING A SUPPORT GROUP GOING

  • Keep track of your group’s progress. From time to time, ask members for their feedback on how the group is going. Find out how useful they find it, how comfortable they feel, and their likes and dislikes about the group. Use this information to make adjustments.
  • Share responsibility for the group. Letting others take leadership roles helps them feel more committed to and invested in the group. Make sure members know their help is appreciated. Since you may find it’s often easier to do things yourself, asking others in the group to take over some responsibilities can be trying. However, no one person should have to do everything, and sharing responsibilities will help you avoid burnout.
  • Be sure everyone has a chance to talk. Some people are naturally more talkative than others. Asking questions to get quiet members to speak up is important. It’s also crucial to keep the more vocal members on-topic and gently remind them to let others have a turn at times.
  • Emphasize the importance of confidentiality. In order for your members to feel safe enough in your support group to self-disclose and work through problems, they need to feel sure that nobody is going to be telling people outside of the group about the group’s discussions. Make sure this is well understood by everyone.
  • Encourage outside contact among members. Members can offer support to each other outside of meetings. The “buddy” system, used by groups like AA, encourages members to take interest in one another’s well-being and form relationships outside the group.
  • Keep recruiting. If you have an open group, make sure you continue to get the word out. Groups can stagnate when the membership remains the same all the time, and if members who leave are never replaced your group will not survive.
  • Share rewards and failures. Let members know that you appreciate their contributions. When people make mistakes, don’t place blame. Don’t heap all of the praise when something goes well on any one person – or all of the guilt when things go badly.
  • Keep a realistic perspective. Don’t idealize the support group. There may sometimes be people that your group won’t be able to help; this doesn’t mean your efforts are futile. Also, when members leave, it doesn’t mean you’ve failed them. Usually it means that they have used the group as much as they think is useful and moved on with their lives.
  • Remember that this is a support group. The dynamics of a group may change over time – for example, it could become more social in function, or it could change focus in terms of topic. No matter how the group changes, your group’s primary purpose is to provide support and understanding to its individual members.

TIPS ON HANDLING DIFFICULT GROUP MEMBERS

In dealing with difficult group members, support group facilitators must learn a delicate combination of control mixed with kindness. This sort of assertive caring directly addresses problems with the group without insulting or offending members. You may use assertive caring during a meeting to get the discussion back on track, or you may wish to speak to the member in private after the meeting.

TIMES TO USE ASSERTIVE CARING:

  • When a member is often late to meetings
  • When a member talks too much, monopolizing the discussion
  • When a member rejects every suggestion that others make – the “yes, but” phenomenon
  • When a member appears to have problems that are more than the group can handle – such as someone who’s had a change in health and should seek medical attention, or someone who may have psychological problems needing professional attention
  • When a member interrupts others or brings up inappropriate or irrelevant subjects
  • When a member’s problem doesn’t match up with what the group is meant to address

THE STEPS TO ASSERTIVE CARING:

  • Show that you understand the member’s position or dilemma: State that you understand the reason(s) behind the member’s negative behavior. Use “I” or “we” statements, which show how his behavior affects you and the group. For example, “I know things are difficult for you, but right now we’re trying to figure out what Camilla can do about child care.”
  • Set limits: Gently but firmly correct the behavior. Explain your reasons; letting the member know why you need to change the situation will make him more likely to cooperate. For example, “I know things are difficult for you, but right now we’re trying to figure out what Camilla can do about child care, and it’s hard to do when you keep interrupting.”
  • Suggest an alternative: Explain what you’d like to see the member do instead of the negative behavior. For example, “I know things are difficult for you, but right now we’re trying to figure out what Camilla can do about child care, and it’s hard to do when you keep interrupting. I wonder if we could wait to talk about your problem until after we’ve come to some conclusions about what Camilla can do.”
  • Get the member’s agreement on the alternative: Make sure the member understands what is being asked of him and agrees to do it. For example, “I know things are difficult for you right now, but we’re trying to figure out what Camilla can do about child care right now, and it’s hard to do when you keep interrupting. I wonder if we could wait to talk about your problem until after we’ve come to some conclusions about what Camilla can do. Is that okay with you?”

IN SUMMARY

Support groups are a great way to provide a service to the people your organization or initiative works with, without a huge investment of time or money. Moreover, running a support group is a good way to reach out and get people interested in the other things your organization or initiative does. It’s also a way to give back to the community – improving or supporting a good public image for your group. Finally, it’s just a good thing to do. With relatively little effort and cost, a support group can make a significant impact in the lives of people dealing with a problem. What better reason can there be?Contributor Chris Hampton

Online Resources

Center for Community Support and Research. (1995). Helpful hints for a successful first meeting.

Center for Community Support and Research. (1995). Keeping a support group going: Five things you should remember.

Center for Community Support and Research. (1995). Starting a support group: Important Decisions

Center for Community Support and Research. (1995). Self-help groups: Are they effective?

Self-help Sourcebook Online

Print Resources

Boyd, F., Morris, T., & Bry, B. (1997). Parent and family support groups with African American families: The process of family and community empowerment. Cultural diversity and mental health. Vol. 3, No. 2, pp. 63-92.

Jacobs, M., & Goodman, G. (1989). Psychology and self-help groups: Predictions on a partnership. American psychologist, Vol. 44, No. 3, pp. 536-545.

Paine, A., Suarez-Balcazar, Y., Fawcett, S., & Jameson, L., & Embree, M. (1990). Self-help leader’s handbook: Leading effective meetings. Lawrence, Kansas: Research and Training Center on Independent Living.

Roberts, F., & Associates, and Developmental Research and Programs, Inc. (1988). Preparing for the drug free years: A family activity book. Seattle, WA: Comprehensive Health Education Foundation.

Organizations

National Self-Help Clearinghouse
Graduate School and University Center
City University of New York
33 West 42nd Street, Room 1227
New York, NY 10036
(212) 840-7606

Sometimes I Choose the Cost – The Tower Princess – Twitter

Six Tangible Ways to Help Someone with Chronic Pain – chronicmom.com – Twitter

Family: Their Role and Impact on Pain Management

Family: Their Role and Impact on Pain Management

https://www.practicalpainmanagement.com/family-their-role-impact-pain-management#:~:text=In%20the%20United%20States,member%20living%20with%20chronic%20pain.&text=The%20effects%20of%20chronic%20pain,their%20family%20and%20significant%20other.

The Surprising Impact Of Chronic Pain, On Family And Money | Arizona Pain

How clinicians can counsel and guide both the patient and the caregiver through chronic pain.

By David Cosio, PhD, ABPP Pages 18-22

In the United States, approximately 100 million people suffer from chronic pain, and about 43% of households have at least one family member living with chronic pain.1,2 The effects of chronic pain are not independent to the patient, but also extend to their family and significant other. Intractable pain can demoralize and depress both the patient and their at-home caregivers, especially when there is no effective pain control or hope for relief.3 Conversely, there is an equally profound effect of family responses on their loved one’s pain,4 and family dynamics may contribute to the exacerbation or recovery of pain.5

Both the patient and the family members need to play an active role in pain treatment plan discussions. (Image: iStock)

There are two dimensions of life with chronic pain:

the loved one whose pain is invisible, and who may:

  • fluctuate activity levels
  • have unpredictable mood swings
  • show signs of depression
  • isolate themselves.

and the family who is unable to see the pain, and who may:

  • take on more responsibility
  • feel stressed, powerless, guilty, and/or anxious
  • withdraw plans (for medical appointments or work disability evaluations)
  • deal with emotional outbursts from the patient
  • feel alienated.6,7

Thus, it is important for frontline practitioners to not only consider the person who is suffering in front of them, but also the people standing behind them who may need their own support and education about pain management.

The Spiraling Effects of Chronic Pain

Chronic pain may negatively impact the family system by intruding on every aspect of life, leading to significant consequences.2 For example, there may be a loss of sexual expression and intimacy in couples, which may lead to separation and divorce. There may be social isolation which then perpetuates further attention-seeking within the healthcare system.

Family members may experience changes in their thoughts and feelings, leading to depression or anxiety. They may engage in ongoing unexpressed family conflict and/or bring up childhood family issues. Family members may begin to believe that their loved one is attention-seeking or avoiding their responsibilities, which then negatively impacts their relationships.

Role reversals may begin to emerge between the pain sufferer and other family members. For example, one spouse may have led the household, from cooking to yardwork. If he or she begins to suffer from pain, they may be unable to maintain those tasks, leaving the partner or other family members to take them on.

Another individual may have served as the “social director” for a family, providing educational support and running errands. If this person is diagnosed with a chronic pain condition, their responsibilities may be subsumed by another family member or the duties may go unfulfilled. The struggle to recover lost functions and roles can be debilitating to a family, increasing stress, grief, and depression.

When Caregivers Reinforce Pain Behaviors

Chronic pain can also impact the family system with significant positive outcomes, although this is less common.6 For example, if a spouse was controlling before they developed a chronic pain condition, then the other family members may now have more freedom. Family members may feel good about helping a loved one if they have a strong need to help others. A decrease in intimacy may feel positive to the person who experiences intimacy, or even sex, with their loved one as unwanted. Some members of the household may get additional support or sympathy from other family members. These positive outcomes can lead to family members unintentionally trying to get the patient to maintain the “sick” role.

The presence of a familial caregiver may contribute to enhanced cohesion and resilience as everyone works together to adapt to the demands of chronic pain.5 However, the family may also be responsible, in part, for maintaining and perpetuating pain behaviors.2 Those who are nearest to the person manifesting pain behavior will almost always respond to them, for example, and their mere presence may come to serve as a cue for increased reports of pain.8 Reinforcements of maladaptive behavior may occur when family members unintentionally provide attention or react too caringly to pain complaints.9 This example is often seen in situations where the person in pain has an overprotective partner or spouse. While attention is certainly a form of love expression, it may also be a negative reinforcement if abused.

Family caregivers may also promote fear of harm; despite meaning well, they may begin taking over tasks or even speaking for their loved one who is suffering from pain in an effort to terminate the stressful impact of their pain complaints. This approach, however, may actually detract from their loved one’s independence and self-efficacy.10 It is important for the person suffering from pain to maintain their independence and that family members support them in this regard.

Some families also deal with emotional problems at a somatic level.11 In other words, they exhibit their emotional problems with physical complaints. The opposite may also be true. Those who suffer from pain may live alone and have no family nearby or support system in place. These individuals may feel ignored or express frustration because they do not have anyone to talk to about their problems.

How to Assess Family Functioning

If the family is involved in maintaining the patient’s pain, then they should also be included in the assessment and treatment of pain.12 Several self-report instruments have been developed to measure family functioning, which may be used with families of patients who suffer from chronic pain, including the:

  • Family Adaptability and Cohesion Evaluation Scales (FACES II)13
  • Family Environment Scale (FES)14
  • McMaster Family Assessment Device (FAD).15

There are also observational measures that may be used to assess family interactions, including the:

  • Revealed differences technique16
  • Simulated Family Activity Measurement (SIMFAM) technique17
  • Manual Interaction Coding System (MICS).18

More specifically, the practitioner should obtain a family history of pain, ideally at a first visit. In addition, information about familial interactions preceding exacerbations and the meaning or attributions ascribed to the pain are important to decipher. Self-report measures such as those listed below may be used to gather some of this information:

  • Spouse’s Perception of Disease (SPOD) questionnaire19
  • West Haven Yale Multidimensional Pain Inventory (WHYMPI)20
  • a diary to relate pain to spouse or partner behavior.12

Finally, family members should be made to feel comfortable when asking for family or couples counseling if needed.

When to Refer Family and Couples Counseling

Frontline practitioners should refer a family or couple to counseling when there is evidence of stress, grief, anger or conflict in the relationship and when helpful to address specific issues. The family or couple may pursue family therapy along with other types of mental health or addiction treatments. Furthermore, counseling can be helpful to the patient and their family members to understand one another better and learn coping skills to bring them closer together.

Clinicians can also educate patients and their families about the benefits of counseling. For example, addressing emotions with support groups or therapy can help to strengthen the family and reduce the suffering of all involved. Research has shown that discussion groups for patients with chronic pain and their family helps to improve communication, support mutual relationships, and provide better coping strategies.21 However, reviews of randomized controlled trials have indicated that family-oriented psychotherapies used to treat chronic illnesses generally have small effects; more research is required.22 There are a number of treatment approaches involving family members that have been developed, including operant-behavioral, cognitive-behavioral, and others.

Operant-behavioral treatment is based on the operant conditioning model of chronic pain, which proposes that pain behaviors are influenced by social responses of family members. Over time, these responses may become rooted patterns which leads to increased dependency and disability.23-25 When using an operant-behavioral approach, family members are taught to validate their loved one’s pain but also disregard maladaptive behaviors and reinforce wellness behaviors.5 These interventions have been shown to be effective when combined with family support and education about coping skills.26,27

Cognitive-behavioral treatment (CBT) is based on the cognitive-behavioral transactional model.28,29 It proposes that the family develops a relatively stable set of beliefs about illness, pain, disability, and coping over time. The focus in CBT is to direct the family toward developing an adaptive problem-solving approach to pain management. This involves increasing the effective use of available family resources (time, energy, knowledge, skills/abilities), teaching family members new adaptive coping skills, and helping them draw upon available external resources (eg, schools, community centers, childcare programs, women’s centers, and other community networks). There has been empirical support for the effectiveness of CBT with spouses of chronic pain sufferers.26,30

There are three other family-oriented therapies that include the spouse or the family; these are structural, cognitive, and strategic. However, these family- oriented therapies have scant research to support their effectiveness.

Structural family therapy proposes that family system structures, such as enmeshment, roles and rules, poor communication, lack of conflict resolution, withholding feelings, and avoiding emotionally laden topics contribute to the  evelopment and perpetuation of pain.12,31 Therefore, treatment concentrates on changing the structure of the family so that a new homeostasis may be reached without the patient taking on the “sick” role.

Cognitive theory focuses on self-disclosure in marriage and a resulting uptake in the couple’s closeness and intimacy.32 The couple is encouraged, for example, to share appraisals and thoughts about each other and openly express negative emotions.

Strategic perspectives, on the other hand, consist of interventions that are practical and problem-oriented; these may require a comprehensive assessment by a therapist.33

How to Encourage Family Self-Care

Members of the family should be encouraged to address their own pain and stress resulting from these circumstances.5  First and foremost, they should maintain a healthy lifestyle, including a healthy diet, exercise, relaxation, and proper sleep hygiene. These practices may not only help the family face the difficult times ahead, but may also serve as models to their loved one suffering from chronic pain. Familial caregivers should avoid coddling or being punitive toward their loved one suffering from pain and instead take on more facilitative roles.

Family caregivers can also work to acknowledge and overcome any special obstacles that may occur when communicating with a person suffering from chronic pain.34 Family members will want to learn as much as they can about their loved one’s condition and treatment options.6 However, family members need to keep in mind that when communicating with their loved one’s doctors, they must first obtain permission and consider HIPPA regulations.

Family members should be encouraged to allow the person in pain to speak directly to the doctor and to only provide additional information when specifically asked to do so. Family members may add insight into their loved one’s pain by sharing their perception using a pain score (0 to 10), describing it as it unfolds throughout the day, and helping their loved one complete a pain log or diary. They may also inquire further about the side effects and dosages of medications and/or the appropriate activity levels and limitations.

A good model may be to encourage family members to view the situation as “our fight” and not “their fight,” being careful not to take negative behaviors of the loved one too personally.6 Families and support systems work best when everyone is operating cohesively. (More on family communication for your patients.)

Conclusion

Frontline practitioners need to be aware of how chronic pain is associated with functional limitations due to the positive and negative reinforcements from the family dynamic in response to pain.35 It is important to include family members in pain education and treatment approaches, and to encourage communication between them, which has been shown to improve outcomes.36 •View SourcesLast updated on: December 12, 2019