PODCAST · health
MDA Quest Podcast
by Muscular Dystrophy Association
The official podcast for the Muscular Dystrophy Association
Episodes
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69: Episode 67 - A Conversation with Steve Way, Part 2: Medicaid, Self-Advocacy, and the Life You Want
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...
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68: Episode 66: More CMT Clinical Trials Than Ever Before: Inside the Research Turning Point
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...
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67: Episode 66 - A Conversation with Steve Way, Part 1: Inside Hulu’s Furious
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…
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66: Episode 65 - Nothing Left to Prove: A Conversation with Kiersten Riggs
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...
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65: Episode 64 - Your Difference Is Your Superpower: A Conversation with Cerys Davage
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...
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64: Episode 63 - The People Behind the People: Family Caregiving, Policy, and the Power of Showing Up
In this episode of the Quest Podcast, we chat with Nicole Lucas, a devoted family caregiver and dental hygienist who stepped away from her career so that her daughter could pursue her dreams; Carly Weber, a 24-year-old law student at the University of Pittsburgh living with spinal muscular…
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63: Episode 62 - From Roadmap to Emmy: Samuel and Dan Habib on Filmmaking, Family, and Disability
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...
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62: Episode 61 - Pizazz, Purpose, and Periodic Paralysis: How Cienna Ditri Turns Lived Experience into Advocacy
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…
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61: Episode 60 - Fashion for Every Body: Izzy Camilleri on Style, Function, and Inclusion
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...
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60: Episode 59 - Redesigning the Day: Accessibility and Mindset Life Hacks with Jax Cowles
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…
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59: Episode 58 - Wrapping up 2025 with Ira and Lily
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,...
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58: Episode 57 - Voices of Inclusion: Celebrating NDEAM with Disability:IN
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…
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57: Episode 56 - Precision Medicine: Mapping the Genetic Code for New Treatments
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...
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56: Episode 55 - Unpacking Disability Pride: Voices from the MDA Community
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...
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55: Episode 54 - Service Dogs, Inc. - Paws with a Purpose
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...
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54: Episode 53 - Invisible People: Making the Rare Seen
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...
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53: Episode 52 - Defending Medicaid with the MDA Advocacy Team
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...
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52: Episode 51 - Finding Joy in the Midst of Change
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…
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51: Episode 50 - PJ's Protocol: A Lifesaving Procedure Fueled by Love
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...
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50: Episode 49 - Navigating Romance with MDA Ambassadors
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...
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49: Episode 48 - Living with intention and creating a more beautiful life with Amber Bosselman
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…
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48: Episode 47 - Wrapping Up 2024 with Leah and Ira
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…
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47: Episode 46 - Creating Beauty from your Dreams with Shakiira Rahaman
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...
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46: Special Edition - National Disability Employment Awareness Month (NDEAM) Panel for Jobseekers and Employers
No show notes for this episode. Transcript
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45: Episode 45 - Making Space and Creating Pathways with Keely Cat-Wells
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…
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44: Episode 44 - Voting Rights and Accessibility
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…
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43: Episode 43 - Disrupting the Narrative
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…
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42: Episode 42 - Empowering Individuality with Inclusive Style
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,...
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41: Episode 41 - Courage Kindled: A Hero’s Unbreakable Spirit
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...
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40: Episode 40 - Unlocking Access and Inspiring Action with Sophie Morgan
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…
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39: Episode 39 - Behind the Scenes: A Look at the Science and Research for New Treatments
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.…
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38: Episode 38 - Love Made Simple, with Alexa and Jacqueline Child of Dateability
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…
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37: Episode 37 - How to find Meaning and Fulfillment with Isaac Banks
In this Quest Podcast episode, we chat with one of Muscular Dystrophy Association’s Ambassadors, Isaac Banks about finding fulfillment in our lives as we skyrocket into 2024. As a certified public speaker, author, and podcaster, he has devoted his career to providing equity and inclusion for…
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36: Episode 36 - Wrapping Up 2023 with Leah and Amy
In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Amy Shinneman. Amy feels that connecting and sharing her story with others through MDA has been life changing. Leah is a dedicated advocate that feels it is important to advocate for...
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35: Episode 35 - Bridging the Gap Between Intention, Action, and Community Inclusion
In this Quest Podcast episode, we chat with the Director of Marketing and Communications at Idealist.org, President for New York Women in Communications (NYWICI) and host of the NYWICI WomenHeard Changemakers podcast. Georgia Galanoudis had devoted her career to deliver advice, inspire action…
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34: Episode 34 - Job Searching, Interviewing, and Employment with a Disability
In this Quest Podcast episode, we chat with a distinguished business leader from the St. Louis area, who lives with physical disabilities. Lori Becker, CEO of Starkloff Disability Institute, has devoted her career to promoting diversity and inclusion both in the workplace and in the community.…
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33: Episode 33 - Wheelchair Barbie Talks Advocacy & Inclusion
In this Quest Podcast episode, we chat with a renowned journalist, model and disability rights activist, who lives with physical disabilities. Madison Lawson, who has been featured in publications including Vogue, Glamour, Teen Vogue, Allure and brands like Sephora, PrettyLittle Thing, and Olay,...
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32: Episode 32 - Accessible Air Travel and Advocacy Updates
In this Quest Podcast episode, we chat with Mark Fisher, MDA’s Director of Advocacy Engagement and Michael Lewis, MDA’s Director of Disability Policy, an advocate who lives with physical disabilities. They join us to share the most recent air travel updates, advocacy information, and expertise…
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31: Episode 31 - ALS Podcast with Brooke Eby
In this Quest Podcast episode, we chat with Brooke Eby, who was diagnosed with ALS in March 2022. Brooke Eby was recently featured on the Today Show, and with almost 70,000 followers on Instagram alone hopes to spread awareness of ALS to as many people as possible. Transcript Guests: Brooke is a...
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30: Episode 30 - A Conversation with Steve Way
In this Quest Podcast episode, we chat with a renowned comedian, writer, and advocate who lives with physical disabilities. Steve Way, actor of the Hulu Original “Ramy”, joins us to share his experiences, expertise, and advise when it comes to navigating life and Hollywood. Transcript Guests…
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29: Episode 29 - Expert Accessible Travel Tips for Your Next Vacation (Travel with Sylvia & Cory)
Summer is around the corner! In this Quest Podcast episode, we chat with two renowned travel writers who live with physical disabilities. Sylvia Longmire, creator of the Spin the Globe accessible travel blog, and Cory Lee, creator of the Curb Free with Cory Lee travel blog, join us to share their...
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28: Episode 28 - There is No Such Thing as Normal
Megan DeJarnett is an author, speaker, disability DEI educator, and inclusion advocate. Megan lives with SMA and is the organizational founder of No Such Thing, a company with a mission to help others redefine purpose by removing defining labels. Author of the children's books, "No Such Thing as...
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27: Episode 27 - The Changing Landscape of Neuromuscular Care
As new treatments, cutting edge research, and a better understanding of genetic sequencing and mutations bring innovative change to the treatment landscape for neuromusclar disease, understanding your options and accessing care is more important than ever. We sit down with Dr. Matthew Harms, a...
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26: Episode 26 - Catching Up with Bill Crossland
For our February Valentine's Day Quest Podcast, we catch up with Bill Crossland, a writer, director, producer, and actor who lives with muscular dystrophy. Bill shares his insights and experiences with our live audience as we chat about dating with a disability, love, relationships, and his...
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25: Episode 25 - New Year, New Mindset
We are excited to start a new year talking about new mindsets, especially when it comes to adversity. On our first episode of 2023, Mindy talks mindset with Jose Flores, who lives with spinal muscular atrophy, in front of a live audience. Jose is a professional speaker, "mindset disruptor," and…
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24: Episode 24 - Embracing Life with a Disability
On this episode of Quest podcast, we join forces with hosts of the popular podcast "Embrace It," Estela Lugo and Lainie Ishbia. Both women live with Charcot Marie Tooth (CMT) and are active with the Hereditary Neuropathy Foundation, raising awareness and offering support to their community.…
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23: Episode 23 - Advocacy, Accessibility, and the DOT
Barriers in travel and the lack of accessible transportation are huge issues for many people living with nueromuscular disease and other physical disabilities. Today, we chat with Kelly Buckland, a disability policy advisor at the U.S. Department of Transportation (DOT), and Michael Lewis, the...
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22: Episode 22 – Creating an Inclusive Work Environment
Inclusively is a technology centered inclusions solution and employment platform for job seekers with disabilities, mental health conditions, and chronic illnesses. Inclusively’s vision is to create a front door to employment that is open to all people, unlocking the world’s hidden talents in the...
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21: Episode 21 – MDA Let's Play - A Community for Everyone
MDA Let's Play is a welcoming online gathering place for teens and adults where they play together, forge new friendships, share similar challenges, learn new skills, and sometimes get to hang out with celebrities, sports athletes, and professional creators. More than two million viewers have...
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20: Episode 20 - Lights, Camera, Action...and Accessibility: Part 3
As the third podcast in our accessibility in the entertainment world, we sit down with Jonathan Lengel. Jonathan is an actor, singer, and performer who lives with a rare form of congenital muscular dystrophy. Jonathan became active in theater as a kindergartener and was recently discovered as…
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Frequently Asked Questions
How many episodes does MDA Quest Podcast have?
MDA Quest Podcast currently has 69 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is MDA Quest Podcast about?
The official podcast for the Muscular Dystrophy Association
How often does MDA Quest Podcast release new episodes?
MDA Quest Podcast has 69 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to MDA Quest Podcast?
You can listen to MDA Quest Podcast on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts MDA Quest Podcast?
MDA Quest Podcast is created and hosted by Muscular Dystrophy Association.
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