MDA Quest Podcast

In this episode of Quest Podcast, actor, comedian, and disability advocate Steve Way returns to continue our conversation, this time getting even more personal about his own reliance on home and community-based services and what independence really requires. Steve explains how these services make everything possible, from getting out of bed to doing his job, why the Medicaid cuts some states are facing are so frightening, and his practical tip for making sense of dense budget bills and Medicaid code. He also talks about picking your battles when energy is limited, why keeping your contact information current with your Medicaid office matters more than ever, and how a public speaking career that began at age nine grew into using his platform from Ramy and Furious to raise awareness for the disability community. Steve shares his experiences, expertise, and candid, no-nonsense perspective on self-advocacy, the fight for healthcare, and creating the life you want instead of waiting for it.TranscriptGuests:Steve Way is a 35-year-old actor, comedian, writer, and speaker. He was born with Ullrich congenital muscular dystrophy and is an advocate for disability awareness. Steve performs stand-up comedy and motivational speeches around the country. He's known for his role as Steve on the Hulu show Ramy, and can now also be seen as Alden in Liz Meriwether's Hulu thriller series Furious, alongside Lola Petticrew — a role that's earned him praise for showing a different, more dramatic side of his range. Off screen, Steve is a strong advocate by writing and speaking publicly on disability justice, healthcare policy, and workers’ rights. Connect with Steve: Instagram: @thesteveway Website: www.thesteveway.com  SubStack: https://thesteveway.substack.com/ Host:Mindy Henderson is MDA's Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with spinal muscular atrophy (SMA) type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a professional speaker and author of the book, The Truth About Things That Suck.Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

In this episode of Quest Podcast, we chat with Sue Bruhn, PhD, CEO of the Charcot-Marie-Tooth Association (CMTA); Stephan Züchner, MD, PhD, Chief Genomics Officer at the University of Miami Miller School of Medicine; and Brian Lin, PhD, Senior Research Portfolio Director at the Muscular Dystrophy Association. Together, they break down what Charcot-Marie-Tooth disease (CMT) does to the peripheral nerves, why more than 100 different genes can cause it, and what separates a clinical diagnosis from a genetic one. They open up about the parts of living with CMT that research can overlook, from fatigue to the weight of seeing your own future in an older relative with CMT, and walk through the therapies now being tested, what the field has learned from trials that fell short, and how patients can get trial-ready today. Sue, Stephan, and Brian share their experiences, expertise, and genuine optimism about where CMT treatment is headed.Remember to register for the CMTA Patient & Research Summit, the association’s largest annual gathering of patients, families, researchers, and industry partners, taking place October 9–11 in San Francisco; you can register at https://give.cmtausa.org/event/cmta-patient-and-research-summit/e769535.TranscriptGuests:Sue Bruhn, PhD, has dedicated her career to patient-focused drug development for the treatment of rare diseases. She spent decades in biotech and has seen multiple products advance from research through clinical development and into the marketplace. She believes deeply in the power of patient communities and is proud to lead the CMTA, the largest philanthropic funder of CMT research and the provider of the most CMT patient services in the world.Sue is a scientist by training, with a degree in chemistry from Iowa State University and a PhD from MIT. Before joining CMTA, she held numerous executive leadership roles in pharmaceutical and biotech companies, including serving as CEO several times.She loves to travel, especially to visit her two adult sons. She lives in New Hampshire with her husband, Mike, and their dog, Brady.Connect with Sue: Facebook: https://www.facebook.com/CMTAssociation Instagram: https://www.instagram.com/cmtausa/ TikTok: https://www.tiktok.com/@cmtausa LinkedIn: https://www.linkedin.com/company/charcot-marie-tooth-association/ Dr. Stephan Züchner, M.D., Ph.D., is a Professor of Human Genetics and Neurology in the role of Chief Genomics Officer at the University of Miami Miller School of Medicine. He received his degrees from the University RWTH Aachen, Germany and an honorary doctoral degree from the Semmelweis Medical School in Budapest. His research interests are focused on identifying strong genetic variation associated with disease. His lab has been involved in identifying over 100 neuromuscular disease genes, such as the MFN2, SARM1, and SORD. More recently he has made significant contributions to repeat expansion disorders, helping to discover RFC1, FGF14, ABCD3 and other loci. His lab also works on basic mechanisms and the genome biology of short tandem repeat loci. To further enhance the ability to identify pathogenic variation, his team has recently developed machine learning and AI tools that have successfully supported disease gene identification. All this is directed towards the genomics-to-therapy concept, whereby progress in genomics will directly, and at times rapidly, lead to therapeutic options to be tested in clinical trials. He also leads the GENESIS genome database and has leadership and advisory roles ClinGen, UDN/UDN-Foundation, CMT Association, All of Us Research Project, and Muscular Dystrophy Association.Connect with Dr. Züchner:  Twitter (X): https://x.com/szuchner https://www.tgp-foundation.org/ Brian Lin, PhD, serves as Senior Research Portfolio Director at the Muscular Dystrophy Association (MDA), where he oversees the organization’s research investments across the spectrum of neuromuscular diseases. He earned his Ph.D. from the University of Maryland, Baltimore, where he investigated disease mechanisms in Amyotrophic Lateral Sclerosis (ALS) and Frontotemporal Dementia (FTD). He later completed postdoctoral training at the U.S. Food and Drug Administration (FDA), focusing on the genetic engineering of protein therapeutics and gene therapy platforms. Leveraging his multidisciplinary background spanning neuroscience and regulatory science, he now guides MDA’s efforts to advance transformative research and accelerate the translation of innovative therapies from the bench to the clinic for the neuromuscular disease community.Host:Mindy Henderson is MDA's Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with spinal muscular atrophy (SMA) type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a professional speaker and author of the book, The Truth About Things That Suck.Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

In this Quest Podcast episode, we sit down with actor, comedian, and disability advocate Steve Way, currently starring as Alden in Hulu's hit thriller Furious. Steve talks about how the role was written for him after a chance meeting with creator Liz Meriwether on a panel about caregiving in media, the freedom he had to improvise on set, and what it meant to finally portray a romantic disabled relationship on screen He's equally candid about where Hollywood still gets representation wrong, and why the attention he's getting now can't stop with him. Steve shares his experiences, expertise, and heartfelt perspective on visibility, artistic risk, and what strength looks like when you want to quit.TranscriptGuests:Steve Way is a 35-year-old actor, comedian, writer, and speaker. He was born with Ullrich congenital muscular dystrophy and is an advocate for disability awareness. Steve performs stand-up comedy and motivational speeches around the country. He's known for his role as Steve on the Hulu show Ramy, and can now also be seen as Alden in Liz Meriwether's Hulu thriller series Furious, alongside Lola Petticrew — a role that's earned him praise for showing a different, more dramatic side of his range. Off screen, Steve is a strong advocate by writing and speaking publicly on disability justice, healthcare policy, and workers’ rights.Connect with Steve: Instagram: @thesteveway Website: https://www.thesteveway.com/ SubStack: https://thesteveway.substack.com/ Host:Mindy Henderson is MDA's Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with spinal muscular atrophy (SMA) type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a professional speaker and author of the book, The Truth About Things That Suck.Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

In this episode of the Quest Podcast, we chat with Kiersten Riggs, a 24-year-old rare disease advocate from Tulsa, Oklahoma, who was a varsity cheerleader when her family first heard the words Friedreich's ataxia (FA). Kiersten opens up about being diagnosed alongside her older sister, the four years she spent hiding from the FA community before becoming one of its loudest voices, and the rude encounter with a bartender that accidentally launched her advocacy career. She speaks candidly about using a mobility aid for the first time, the difference between help that empowers and help that quietly takes independence away, and what happened when she finally put a photo of her walker on her dating profile. Kiersten shares her experiences, expertise, and heartfelt perspective on diagnosis, sibling journeys, self-advocacy, and giving yourself permission to stop proving anything to anyone.TranscriptGuests:Kiersten Riggs is a 24-year-old advocate for the rare disease community, living with Friedreich's ataxia (FA), and based in Tulsa, Oklahoma. She works in social media at Bionews, where she uses her platform to raise awareness and understanding of rare diseases and connects content creators with paid opportunities to tell their stories. Kiersten is passionate about her work because she believes awareness leads to stronger communities and continued progress toward new treatments, and she loves connecting with others navigating similar journeys.Connect with Kiersten: TikTok – @kiersten.riggs Instagram – @kiersten.riggs Facebook – https://www.facebook.com/kiersten.riggs.7/ Host:Mindy Henderson is MDA's Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with spinal muscular atrophy (SMA) type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a professional speaker and author of the book, The Truth About Things That Suck.Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

In this episode of the Quest Podcast, we chat with Cerys Davage, a Welsh podcaster and content creator living with limb-girdle muscular dystrophy (LGMD), who has turned her diagnosis into a platform for connection and representation. Cerys opens up about growing up in a family that chose openness over silence, the moment in university when she stopped hiding her disability, and how that shift led her to launch her podcast, Unbalanced with Cerys Davage. She speaks candidly about the ongoing need for greater disability representation, the promising research on the horizon for her specific condition, LGMD2i/R9, and what it has taken to build an independent life — from adaptive driving to the everyday problem-solving that rarely gets seen behind the scenes. Cerys shares her experiences, expertise, and heartfelt perspective on identity, independence, and why she believes your differences are your superpower.TranscriptGuests:Cerys Davage is a Welsh podcaster and content creator in her twenties, dedicated to showcasing what life is really like as a young person with a disability. Her podcast, ‘Unbalanced with Cerys Davage,’ covers topics that young adults go through, whilst providing an insight into a variety of people’s lives with different ‘life barriers.’ She is a passionate social media creator, dedicated to proving that your disability does not define you, and she loves connecting with her community through her work online.Connect with Cerys: Instagram - @cerysdavage YouTube - @cerysdavage TikTok - @cerysdavage Instagram - @unbalancedpodcast Host:Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with spinal muscular atrophy (SMA) type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a professional speaker and author of the book, The Truth About Things That Suck.Connect with Mindy:  LinkedIn: https://www.linkedin.com/in/hendersonmindy/  Instagram: https://www.instagram.com/mindyhendersonspeaks/