Episodes

  • 60: Episode 59 - Redesigning the Day: Accessibility and Mindset Life Hacks with Jax Cowles

    60: Episode 59 - Redesigning the Day: Accessibility and Mindset Life Hacks with Jax Cowles
    Jan 20 2026

    In this Quest Podcast episode, we chat with public speaker, consultant, and disability advocate, Jax Cowles. Jax shares an honest, thoughtful, and deeply creative conversation about daily life, independence, and problem-solving. She opens up about how creativity and “life hacking” became essential tools rather than optional skills, and how small, low-cost adaptations can completely transform everyday tasks. Jax shares her experiences, expertise, and advice when it comes to practical insight, encouragement, and a refreshing perspective on living creatively and fully—exactly as you are.

    Transcript

    Guests:

    Jax Cowles is a speaker, consultant, and disability advocate who uses her unique perspective and experience in creative storytelling, organizational strategies, and her expertise in architectural and fashion style/design to break the barrier between fearing versus embracing disability.

    Diagnosed with spinal muscular atrophy (SMA) at 20-months old, Jax began sharing her story at a young age, speaking at schools and events to show it’s OK to be different. From her early school days, to a 2024 Keynote Gala speaker, Jax has always been a proud member of MDA.

    Through her travels to cities like London, Paris, and Amsterdam; Jax highlights accessibility around the world and encourages others that nothing is impossible when you’re the writer of your own story. She believes accessibility should never be a question and that with the right tools, information, and mindset, we can build a more inclusive world—not just by thinking outside the box, but by breaking the box

    Connect with Jax:

    • https://www.jaxcowles.com/
    • https://www.youtube.com/channel/UCVhqq8GaKYLmFs-v4xQjkrw
    • https://www.instagram.com/jaxcowles/
    • https://www.facebook.com/jaxcowles
    • https://www.pinterest.com/jax_cowles/
    • https://www.linkedin.com/in/jacquelynncowles/
    • https://x.com/jaxcowles

    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 motivational speaker and a writer, 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/
    Show More Show Less
    58 mins
  • 59: Episode 58 - Wrapping up 2025 with Ira and Lily

    59: Episode 58 - Wrapping up 2025 with Ira and Lily
    Nov 26 2025
    In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Lily S. and Ira Walker. Lily is a dedicated advocate finishing her first year as a National Ambassador. She shares her journey, why she believes it is important to advocate for yourself and others, and what she has learned along the way. As Ira wraps up his second year as a National Ambassador and prepares to start a career as a published author, he chats about how connecting with his community and sharing his story with others through MDA has been life-changing. These National Ambassadors join us to share their experiences, expertise, and advice.

    Transcript

    Guests:

    Lily Sander is 18 years old and lives with Charcot-Marie-Tooth (CMT) disease. Her passions include disability advocacy, female justice advocacy, and accessible education. She enjoys traveling with her family, having a good cup of coffee, and spending time with her dogs. Her hope is to inspire others to embrace a positive outlook(even in the face of adversity), encourage individuals to advocate for themselves and others, and make a meaningful impact on the world.

    Connect with Lily:

    • LinkedIn: https://www.linkedin.com/in/lily-sander-89b75a274/
    • Instagram: @la.sander / https://www.instagram.com/la.sander/
    Ira Walker is 39 years old and lives with spinal muscular atrophy (SMA). He’s an avid sports fan, cultural connoisseur of the arts, and an impressive cook who is constantly evolving his culinary abilities. He describes himself as a highly independent and active gentlemen who is living his dream and best life in south Florida while working an exciting career in HR. Ira loves exploring the sights and sounds of his environment in his sophisticated modified van.

    Connect with Ira:

    • Facebook –https://www.facebook.com/IraWalker321
    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 motivational speaker and a writer, 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/
    Show More Show Less
    44 mins
  • 58: Episode 57 - Voices of Inclusion: Celebrating NDEAM with Disability:IN

    58: Episode 57 - Voices of Inclusion: Celebrating NDEAM with Disability:IN
    Oct 21 2025
    October is National Disability Employment Month (NDEAM). In this month’s episode of the Quest podcast, we dive into accessibility and inclusion in the workforce with Russell Shaffer, the Executive Vice President of Strategy & Programsat Disability:IN. Drawing on his lived experience of vision loss and his years of working in corporate diversity, equity, and inclusion, Russell shares how businesses can move from compliance to strategic disability inclusion, the power of measurement and benchmarking, and how individuals with disabilities and organizations alike can lead the change. He shares his expertise and advice as we discuss creating inclusive workplaces, what’s next in the field of disability inclusion, and how we can all play a role in advancing employment and empowerment.

    Transcript

    Guests:

    Russell Shaffer is the Executive Vice President ofStrategy & Programs at Disability:IN, where he has responsibility for the development and implementation of the organization’s strategic plan, along with the measurement and reporting of its key performance indicators. In addition, Russell and his team lead signature Disability:IN programs, including Accessibility, Disability Equality Index, Learning & Workforce Development, NextGen Leadership, and Supplier Diversity. He joined Disability:IN in October 2022 from Walmart Inc. where he most recently was Senior Director ofGlobal Culture, Diversity, Equity & Inclusion (CDEI). Russell currently serves on the Board of Trustees for the American Printing House for the Blind (APH) in Louisville, Kentucky, and his board service includes prior terms with Sources for Community Independent Living in Fayetteville, Arkansas, and the American Foundation for the Blind (AFB). His AFB service included a two-year term as Chair of the Board, and in 2015 he received the AFB Stephen Garff Marriott award in recognition of his professional achievement and service as a person who is blind or low vision. While at Walmart, he served two terms as Chair of the company’s inABLE Associate Resource Group, and in 2018, he traveled to China as a private-sector disability employment expert as part of a U.S. State Department delegation. Disability:IN honored Russell as the 2019 recipient of the annual John D. Kemp Leadership Award in recognition of his commitment to advancing disability inclusion inside Corporate America. He is an honors graduate of Malone University in Canton, Ohio, and holds dual Bachelor of Arts degrees in business administration and communication arts. Russell resides in Rogers, Arkansas, with his wife, Jessica, and their children, Sophia and Brady. His perspectives on disability advocacy and inclusion are informed by his experiences with retinitis pigmentosa, a genetic, degenerative eye disease that was diagnosed when Russell was 10 years old and led to his legal blindness by his late 20s.

    Connect with Russell Shaffer:

    • https://disabilityin.org/
    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, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, 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/
    Show More Show Less
    58 mins
  • 57: Episode 56 - Precision Medicine: Mapping the Genetic Code for New Treatments

    57: Episode 56 - Precision Medicine: Mapping the Genetic Code for New Treatments
    Sep 23 2025
    In this Quest Podcast episode, we chat with clinicians, Dr. Stephan Züchner, Dr. Conrad “Chris” Weihl, and the Interim Chief Research Officer of the Muscular Dystrophy Association, Dr. Angela Lek. Leaders in the field of genetic mapping, all three have devoted their time and expertise to research and treatments for neuromuscular diseases. Their goal is to map the genome for neuromuscular diseases, develop successful treatments, and ultimately find a cure for those effected by neuromuscular diseases. These specialists join us to share their experiences, expertise, and advice.

    Transcript

    Guests:

    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:

    • X: https://x.com/szuchner
    • Website: https://www.tgp-foundation.org/
    Dr. Conrad “Chris” Weihl is a Professor of Neurology, Head of the Neuromuscular Section and Director of the Muscular Dystrophy Association Clinic at Washington University School of Medicine in St. Louis, Missouri, USA. His research program focuses on both genetic and acquired myopathies with an emphasis on how dysfunction in protein quality controls lead to muscle degeneration. He began his career investigating the pathogenic mechanism of VCP disease mutations in muscle disease. Dr. Weihl has a strong commitment to the training of future neuromuscular clinicians and myologists and was awarded a K24 mid-career investigator award to mentor residents, fellows, junior faculty and early-stage scientists in patient oriented research. Clinically, Dr. Weihl sees patients in a multidisciplinary Muscular Dystrophy Association Care Center and recently established a center devoted to the care of patients with IBM.

    Dr. Angela Lek is the Interim Chief Research Officer at the Muscular Dystrophy Association. Dr. Lek is a renowned scientist with over 15 years of experience in neuromuscular disease research. She now leads MDA’s global research portfolio and strategic direction — driving efforts to accelerate the development of treatments and cures for individuals living with neuromuscular diseases. She has trained and led research programs at institutions including Boston Children’s Hospital and Yale University and brings both deep scientific expertise and a personal commitment to advancing care and therapies for the neuromuscular 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, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, 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/
    Show More Show Less
    1 hr and 6 mins
  • 56: Episode 55 - Unpacking Disability Pride: Voices from the MDA Community

    56: Episode 55 - Unpacking Disability Pride: Voices from the MDA Community
    Jul 8 2025
    In this Quest Podcast episode, we chat with MDA Ambassadors, Payton Rule, Fred Graves and former MDA National Ambassador Amy Shinneman. Payton shares a journey of transformation from self-doubt to pride, emphasizing how important community has been in helping her feel seen and valued. While Fred offers a perspective rooted in resilience and advocacy, discussing how he’s navigated life with a disability by focusing on his strengths and passions and reflecting on the daily decisions he makes to affirm his self-worth, despite encountering ableism or societal barriers. Amy also speaks about how her understanding of Disability Pride has grown over time, especially as she’s learned to embrace her disability as part of her identity rather than something to hide or overcome. These ambassadors share their experiences, expertise and advice when it comes to a celebration of identity, strength, and the ongoing journey toward empowered self-expression, disability pride and navigating life.

    Transcript

    Guests:

    Amy Shinneman is a disabled blogger, a columnist for the Hamilton County Reporter, and freelance writer living with Bethlem myopathy. She has had symptoms since birth but did not receive a diagnosis until she was 44 years old – thanks to genetic testing. She is the mom of two college-aged sons. She enjoys painting with acrylic and oils, cooking, baking, reading, and exercising. She also enjoys training for marathons with her husband, Jamie, who pushes her on her duo bike. They have competed in multiple marathons together.

    Connect with Amy:

    • Facebook – amy.l.shinneman
    • Instagram – @ashinneman
    Fred Graves lives with limb-girdle muscular dystrophy (LGMD) and has a passion for disability advocacy. He loves spending time with his son, and his interests include music production, drones, sneaker collecting, travel, and staying connected to his MD/LGMD “fam.”

    Connect with Fred:

    • Instagram: @kngfrd
    Payton Rule is a Clinical Psychology PhD student at Washington University in St. Louis, where her research focuses on wellbeing among individuals with disabilities. She was diagnosed with Charcot-Marie-Tooth disease (CMT) at the age of five. In her free time, Payton enjoys playing wheelchair pickleball, spending time with friends and family, and exploring local parks with her dog.

    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, type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, 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/
    Show More Show Less
    54 mins
  • 55: Episode 54 - Service Dogs, Inc. - Paws with a Purpose

    55: Episode 54 - Service Dogs, Inc. - Paws with a Purpose
    Jun 27 2025
    In this Quest Podcast episode, we chat with a former attorney who left her law practice to devote her time to building Service Dogs, Inc. Sheri Soltes founded Service Dogs, Inc. in 1988 on the concept of using dogs rescued from animal shelters. Under her guidance, Service Dogs, Inc. has led the industry in combining the use of all rescue dogs with positive reinforcement training methodology. While offering her clients more independence and a new leash on life, she joins us to share her experiences, expertise and advice when it comes to service dogs and navigating life.

    Transcript

    Guests:

    Sheri Soltes founded Service Dogs, Inc. in 1988 on the concept of using dogs rescued from animal shelters. An honors graduate from both the University of Texas School of Law and the University of Texas Plan II Honors undergraduate program, she left her law practice to devote her time to building Service Dogs, Inc. Under her guidance, Service Dogs, Inc. has led the industry in combining the use of all rescue dogs with positive reinforcement training methodology.

    ​In 2023, Sheri served as the new Chair of Assistance Dogs International North America (ADI NA). She chaired the ADI NA Legislative and Advocacy Committee from 2018 - 2022. Her work contributed to the revisions of the Air Carrier Access Act making air travel safer for passengers traveling with legitimate Service Dogs.

    In 2022, she helped negotiate with Walmart and Etsy to stop selling Service Dog vests and other equipment to the general public.

    Sheri has mentored assistance dog programs around the world including Australia, Japan, Spain and Chile and has been a featured speaker at many conferences and institutions.

    ​Sheri’s articles on the legal rights of Assistance Dog users have been published by Assistance Dogs International, the International Association of Assistance Dog Partners and Leader Dogs for the Blind. She drafted the 1995 revisions for Texas’ Assistance Dog accessibility statute.

    ​In 2023, Austin Business Journal selected Sheri as a finalist in their Women in Business Awards and their CEO Awards. In 2022 she won an Austin American-Statesman Extraordinary Woman Award.

    Connect with Sheri:

    • Facebook: https://www.facebook.com/servicedogsinc
    • Instagram: https://www.instagram.com/servicedogsinc/
    • LinkedIn: https://www.linkedin.com/company/servicedogs/
    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, type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, 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/
    Show More Show Less
    42 mins
  • 54: Episode 53 - Invisible People: Making the Rare Seen

    54: Episode 53 - Invisible People: Making the Rare Seen
    Jun 5 2025
    In this Quest Podcast episode, we chat with a former pharmacist turned singer/songwriter who lives with Generalized Myasthenia Gravis. Dania Quill has devoted her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer through song while sharing stories of resilience and positivity. While offering her followers a voice and a new perspective, she joins us to share her experiences, expertise and advice when it comes to navigating life and following your dreams.

    Listen to her song “Invisible People” that MG Holistic has chosen for the 5 year Anniversary video and official MG Conference Song: https://daniaquill.com/track/4291421/invisible-people

    Transcript

    Guests:

    Daniä Quill fell in love with the guitar when she was just six years old, but coming from a family of medical practitioners she chose pharmacy as her profession. She was enjoying a successful career as a hospital pharmacist, reserving music for weekend hobby time when it all came to a screeching halt. One Halloween evening Quill fell, then fell again and couldn’t keep to her feet. “I didn’t hurt,” she recalls. “I could feel everything normally, I just couldn’t move.”

    For the next two years she saw neurologist after neurologist, some who even accused her of lying, before she was finally diagnosed with Myasthenia gravis. MG is an autoimmune neuromuscular disease that results in intermittent periods of weakness or partial paralysis of the body’s voluntary muscles. Quill’s case turned out to be refractory to standard treatment, leaving her vulnerable to exacerbations and crisis - the loss of the use of breathing muscles. And along with her MG came the rather rare complication of dysautonomia that causes episodic loss of her ability to digest food. Ironically, this resulted in the necessity for IV feeding for the IV feeding specialist pharmacist. Through all this, Quill lost her job. But more devastating to her was the weakness in her muscles that made her believe she could no longer play or sing.

    But she became determined to share her music with the world. Lacking the stamina to play long sessions she taught herself to record her songs, coaxing her muscles and voice to sustain long enough to lay down one sound bite at a time. A recent video got over 16K views on TikTok, but the proudest moment for Quill was knowing it resulted in the search for “Happy things to cheer you up.”

    Connect with Dania:

    • Website: beacons.ai/daniaquill
    • Instagram: https://www.instagram.com/dania_quill/
    • YouTube: https://www.youtube.com/@DaniaQuill
    • TikTok: https://www.tiktok.com/@daniaquill
    • Facebook: https://www.facebook.com/profile.php?id=100082825453336
    • Spotify: https://open.spotify.com/playlist/37i9dQZF1E4wquf9Gi2WL9?si=NOMIQZkGQYC0S-ndsOrt4g
    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, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, 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/
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    44 mins
  • 53: Episode 52 - Defending Medicaid with the MDA Advocacy Team

    53: Episode 52 - Defending Medicaid with the MDA Advocacy Team
    Apr 16 2025
    In this Quest Podcast episode, we chat with Joel Cartner, MDA’s Director of Access Policy, and Jori Houck, MDA’s Manager of Advocacy Engagement. They join us to share the most recent updates and information about Medicaid benefits, current legislative efforts and what MDA’s Advocacy Team is doing to protect those efforts, and how you can get involved.

    • Please join us at: www.MDA.org/Advocacy
    • Say no to Medicaid Cuts: www.MDA.org/Medicaid
    • Interested in media engagement opportunities: email Advocacy@MDA.org
    Transcript

    Guests:

    Joel Cartner is a lawyer and public policy professional working as the Muscular Dystrophy Association’s Director of Access Policy. Cartner leads MDA’s efforts in conceiving, enacting, and supporting the implementation of public policy proposals that expand access to care for the neuromuscular disease community. Cartner has a background in health, disability, and education law (including complex litigation) and policy. He received his J.D. from Quinnipiac University School of Law and his B.A. in Political Science from the University of North Carolina Wilmington.

    Connect with Joel:

    • Email: advocacy@mdausa.org
    • LinkedIn: https://www.linkedin.com/in/joel-cartner-esq-34396b94/
    Jori Houck is the Manager of Advocacy Engagement at the Muscular Dystrophy Association. Jori mobilizes advocates, helps craft legislative and advocacy strategies alongside the Public Policy and Advocacy team, and works to elevate the voices of the neuromuscular community. Prior to joining MDA, Jori worked in nonprofit education and career training advocacy, as well as spent time as a Congressional staff member. She enjoys building relationships with advocates, legislators, partner advocacy organizations, and other stakeholders. She is always looking for innovative ways to bridge gaps between lived experience and legislative action that elevates the voices of the neuromuscular and disability communities. She helps lead efforts to educate and engage MDA advocates, empowering them to share their stories and drive meaningful change. She is an alumna of the University of Connecticut. Outside of work, Jori enjoys coffee, nature, watching sports, and traveling, especially planning dog-friendly trips with her Yorkie, Tristan.

    Connect with Jori:

    Email: advocacy@mdausa.org

    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, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and writer, 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/
    Show More Show Less
    41 mins