PODCAST

MDA Quest Podcast

Muscular Dystrophy Association

The official podcast for the Muscular Dystrophy Association

health & fitness medicine

All Episodes

33:37

63: Episode 62 - From Roadmap to Emmy: Samuel and Dan...

MDA Quest Podcast ·

2026/04/08

In this Quest Podcast episode, we chat with Emmy Award-winning filmmaker and disability advocate Samuel Habib and his father and longtime collaborator Dan Habib, the creative duo behind the extraordinary documentary The Ride Ahead. In the film, Samuel opens up about his personal journey into adulthood — navigating housing, employment, relationships, and higher education while living with a rare neurodevelopmental condition — and how connecting with the disability community helped him find

55:08

62: Episode 61 - Pizazz, Purpose, and Periodic...

MDA Quest Podcast ·

2026/03/25

In this Quest Podcast episode, we chat with advocate, social media influencer, and President of the Periodic Paralysis Association (PPA), Cienna Ditri, who lives with periodic paralysis. Cienna shares her diagnostic journey — from childhood soccer games where something felt "off" to finally getting answers — and how living with an unpredictable condition has shaped her into a fierce and passionate self-advocate. And because style is never far from the conversation, she shares her love of adaptive

38:54

61: Episode 60 - Fashion for Every Body: Izzy...

MDA Quest Podcast ·

2026/02/24

In this Quest Podcast episode, we chat with internationally recognized fashion designer Izzy Camilleri, a true pioneer in adaptive fashion. She shares how her successful career in high-end fashion took a transformative turn when she began designing clothing for people with disabilities and partnered with Silverts—work that helped ignite today’s adaptive fashion movement. Izzy shares how to balances style with function, the importance of universal design, and the meaningful progress that the fashion

57:41

60: Episode 59 - Redesigning the Day: Accessibility...

MDA Quest Podcast ·

2026/01/20

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,

43:34

59: Episode 58 - Wrapping up 2025 with Ira and Lily

MDA Quest Podcast ·

2025/11/26

57:41

58: Episode 57 - Voices of Inclusion: Celebrating...

MDA Quest Podcast ·

2025/10/21

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

65:55

57: Episode 56 - Precision Medicine: Mapping the...

MDA Quest Podcast ·

2025/09/23

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

53:51

56: Episode 55 - Unpacking Disability Pride: Voices...

MDA Quest Podcast ·

2025/07/08

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

41:59

55: Episode 54 - Service Dogs, Inc. - Paws with a...

MDA Quest Podcast ·

2025/06/27

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,

43:56

54: Episode 53 - Invisible People: Making the Rare Seen

MDA Quest Podcast ·

2025/06/05

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

40:34

53: Episode 52 - Defending Medicaid with the MDA...

MDA Quest Podcast ·

2025/04/16

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

64:00

52: Episode 51 - Finding Joy in the Midst of Change

MDA Quest Podcast ·

2025/04/01

In this Quest Podcast episode, we chat with MDA Ambassador Jess Westman about embracing individuality and finding joy in our lives as paths and priorities change. The activist, actor, author, and podcaster has devoted his career to providing joy and laughter to others and finds personal fulfillment through his faith and conscientiousness. Jess joins us to share his experiences, expertise, and advice.Transcript Guests: Jess Westman is a 25-year-old actor, disability activist, writer/composer,

50:25

51: Episode 50 - PJ's Protocol: A Lifesaving...

MDA Quest Podcast ·

2025/03/07

In this Quest Podcast episode, we chat with PJ’s father, Brian Nicholoff, Director of Patient Access at the Little Hercules Foundation, Amy Aikens and emeritus professor of Pediatrics and Neurology, Dr. Jerry Mendell. Brian has been an advocate for Duchenne Muscular Dystrophy for nearly 40 years and Amy advocates for treatment access concerns and works directly with individuals and families to address individual barriers. Dr. Mendell, in his over 50-year career, has devoted efforts to understand

55:54

50: Episode 49 - Navigating Romance with MDA Ambassadors

MDA Quest Podcast ·

2025/02/11

In this episode of Quest Podcast, we chat with three of our MDA Ambassadors. Nora is a passionate animal advocate and lives with Selenon (SEPN1)-related myopathy (RM). Justin is a disability advocate and an Operations Manager and lives with Limb-girdle Muscular Dystrophy and K.L. is an entrepreneur, poker professional, and influencer living with Spinal Muscular Atrophy. They have each devoted themselves to finding their path in life and advocating and teaching others about their respective

39:14

49: Episode 48 - Living with intention and creating a...

MDA Quest Podcast ·

2025/01/28

In this Quest Podcast episode, we chat with certified Life Coach who lives with Spinal Muscular Atrophy. Amber Bosselman has devoted her career to providing living skills for individuals with physical disabilities, and helping them find personal fulfillment, and develop strategies to improve their lives and reach their goals. While offering her clients a new perspective and a soft place to land, she joins us to share her experiences, expertise and advice when it comes to navigating life and

44:25

48: Episode 47 - Wrapping Up 2024 with Leah and Ira

MDA Quest Podcast ·

2024/11/25

In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Ira Walker. Leah is a dedicated advocate that feels it is important to advocate for yourself and stand up for those that are not able.Ira feels that connecting and sharing his story with others through MDA has been life changing. These Ambassadors join us to share their experiences, expertise, and advice. Transcription Guests: Leah is 17 years old and was born with an ultra-rare form

27:23

47: Episode 46 - Creating Beauty from your Dreams...

MDA Quest Podcast ·

2024/11/18

In this Quest Podcast episode, we chat with the Kira Cosmetics founder and entrepreneur, who lives with muscular dystrophy. Shakiira Rahaman, who founded her make-up line in 2019 after a life changing event, joins us to share her experiences, expertise, and advice when it comes to navigating life and following your dreams. Transcript Guests: Kira Cosmetics was founded by Shakiira Rahaman, a 37-year-old Fl. woman with Muscular Dystrophy. After an extended hospital stay in 2019, she went home and

84:36

46: Special Edition - National Disability Employment...

MDA Quest Podcast ·

2024/10/18

No show notes for this episode.Transcript

32:49

45: Episode 45 - Making Space and Creating Pathways...

MDA Quest Podcast ·

2024/10/16

In this Quest Podcast episode, we chat with world-renowned advocate, entrepreneur, public speaker and educator, Keely Cat-Wells. She devotes her time and expertise to creating education and employment opportunities and inclusive spaces for those with disabilities - and delivers advice and inspires action while sharing stories of resilience and positivity. Keely is the founder and CEO of Making Space, a talent acquisition and learning experience platform and a co-founder of Making Space Media, a

39:34

44: Episode 44 - Voting Rights and Accessibility

MDA Quest Podcast ·

2024/10/03

In this Quest Podcast episode, we chat with Shaun Hill, MDA’s Manager of Public Policy & Advocacy and Mark Fisher, MDA’s Director of Advocacy Engagement. They join us to share the most recent voting updates, accessibility information, and expertise and advise about MDA's voting program and advocacy efforts. Please join us and make your vote count at https://mda.org/vote.Guests: Shaun Hill currently serves as Manager, Public Policy & Advocacy for the Muscular Dystrophy Association. Ms

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