MDA Quest Podcast

MDA Quest Podcast

The official podcast for the Muscular Dystrophy Association

Episodes

57: Episode 56 - Precision Medicine: Mapping the Genetic Code for New Treatments

September 23, 2025 • 65 mins
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...
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56: Episode 55 - Unpacking Disability Pride: Voices from the MDA Community

July 8, 2025 • 53 mins
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 stren...
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55: Episode 54 - Service Dogs, Inc. - Paws with a Purpose

June 27, 2025 • 41 mins
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 ind...
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54: Episode 53 - Invisible People: Making the Rare Seen

June 5, 2025 • 43 mins
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 join...
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53: Episode 52 - Defending Medicaid with the MDA Advocacy Team

April 16, 2025 • 40 mins
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. 

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

April 1, 2025 • 64 mins
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
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51: Episode 50 - PJ's Protocol: A Lifesaving Procedure Fueled by Love

March 6, 2025 • 50 mins
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. ...
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    50: Episode 49 - Navigating Romance with MDA Ambassadors

    February 10, 2025 • 55 mins
    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 i...
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    49: Episode 48 - Living with intention and creating a more beautiful life with Amber Bosselman

    January 28, 2025 • 39 mins
    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 exper...
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    48: Episode 47 - Wrapping Up 2024 with Leah and Ira

    November 25, 2024 • 44 mins
    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.

    T...
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    47: Episode 46 - Creating Beauty from your Dreams with Shakiira Rahaman

    November 18, 2024 • 27 mins
    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-...
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    46: Special Edition - National Disability Employment Awareness Month (NDEAM) Panel for Jobseekers and Employers

    October 18, 2024 • 84 mins
    No show notes for this episode.

    Transcript
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    45: Episode 45 - Making Space and Creating Pathways with Keely Cat-Wells

    October 16, 2024 • 32 mins
    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 l...
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    44: Episode 44 - Voting Rights and Accessibility

    October 3, 2024 • 39 mins
    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 serv...
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    43: Episode 43 - Disrupting the Narrative

    July 8, 2024 • 46 mins
    In this Quest Podcast episode, we chat with the director, executive producer, and leading character of the movie Good Bad Things: Shane Stanger, Steve Way, and Danny Kurtzman respectively. This trio joins us to share their experiences, expertise, advise and hope when it comes to navigating life and Hollywood, and creating a future that is inclusive of everyone.

    Keep up on the latest information about the movie release...
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    42: Episode 42 - Empowering Individuality with Inclusive Style

    June 4, 2024 • 39 mins
    In this Quest Podcast episode, we chat with the Executive Director of Open Style Lab (OSL), a non-profit organization that is on a mission to make style accessible for everyone, regardless of cognitive and physical abilities. Yasmin Keats has devoted her career to the core functions of research, education, and informing the public about inclusive design. She stresses style empowers people, bringing them joy, identity, and self...
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    41: Episode 41 - Courage Kindled: A Hero’s Unbreakable Spirit

    May 1, 2024 • 51 mins
    In this Quest Podcast episode, we chat with a retired US Army veteran and firefighter, Ken Sutcliffe and his wife, Andi. He has devoted his career to saving lives but now he must also fight for his own after being diagnosed with Amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's Disease, He and his wife join us to share their experiences, advice and stories of resilience and positivity.

    To view a full l...
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    40: Episode 40 - Unlocking Access and Inspiring Action with Sophie Morgan

    April 19, 2024 • 49 mins
    In this Quest Podcast episode, we chat with world-renowned advocate, entrepreneur, TV personality and producer, Sophie Morgan. She devotes her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer together while sharing stories of resilience and positivity. Sophie is a co-founder of Making Space Media, a production company that focuses on increasin...
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    39: Episode 39 - Behind the Scenes: A Look at the Science and Research for New Treatments

    March 14, 2024 • 50 mins
    In this Quest Podcast episode, we chat with geneticist, Dr. Jeffrey Chamberlain and the Chief Research Officer of the Muscular Dystrophy Association, Dr. Sharon Hesterlee. Both have devoted their time and expertise to create and move forward research and treatments for neuromuscular diseases. Their goal is to create successful treatments and eventually a cure for those effect by neuromuscular diseases. These specialists join u...
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    38: Episode 38 - Love Made Simple, with Alexa and Jacqueline Child of Dateability

    February 12, 2024 • 43 mins
    In this Quest Podcast episode, we chat with the founders of Dateability, a dating app geared towards individuals with disabilities and chronic illnesses. Alexa and Jacqueline Child have devoted their time to create a safe and accepting space that allows individuals to create meaningful connections. Their goal is to make love accessible for everyone. These ladies join us to share their experiences, expertise, and advice.
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