PODCAST

MDA Quest Podcast

Muscular Dystrophy Association

The official podcast for the Muscular Dystrophy Association

health & fitness medicine

All Episodes

43:00

38: Episode 38 - Love Made Simple, with Alexa and...

MDA Quest Podcast ·

2024/02/12

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.Transcript Guests: Alexa Child, co-founder of Dateability, graduated from

54:19

37: Episode 37 - How to find Meaning and Fulfillment...

MDA Quest Podcast ·

2024/01/18

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 others and finds personal fulfillment through his faith and mindfulness. He joins us to share his experiences, expertise, and advice. Transcript Guests: Isaac Banks has many obstacles that could stop him,

41:44

36: Episode 36 - Wrapping Up 2023 with Leah and Amy

MDA Quest Podcast ·

2023/12/05

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 yourself and stand up for those that are not able. These ladies join us to share their experiences, expertise, and advice. Transcript Guests: Amy lives with a type of muscular dystrophy called Bethlem

43:21

35: Episode 35 - Bridging the Gap Between Intention,...

MDA Quest Podcast ·

2023/11/14

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, and make us feel closer together while sharing stories of resilience and positivity. She joins us to share her experiences, expertise, and advice. Transcript Guest: Throughout her career Georgia Galanoudis

46:48

34: Episode 34 - Job Searching, Interviewing, and...

MDA Quest Podcast ·

2023/10/23

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. She joins us to share her experiences, expertise, and advice in recognition of National Disability Employment Month. If you would like to get involved in advocating for policy issues related to employment

61:10

33: Episode 33 - Wheelchair Barbie Talks Advocacy &...

MDA Quest Podcast ·

2023/09/13

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, joins us to share her experiences, expertise, and advice when it comes to navigating life. Transcript Guests: Madison Lawson is a journalist, model and disability rights activist. Her written works have

63:28

32: Episode 32 - Accessible Air Travel and Advocacy...

MDA Quest Podcast ·

2023/08/09

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 and advise about MDA's grassroots program and advocacy volunteer efforts. Please join us and make your voices heard about making air travel accessible at mda.org/airtravel. Transcript Guests: Mark Fisher is

48:00

31: Episode 31 - ALS Podcast with Brooke Eby

MDA Quest Podcast ·

2023/07/19

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 social media influencer who was recently featured on the Today Show. She was diagnosed with ALS in March 2022 after four years of confusing symptoms in her leg. She hopes to spread awareness of ALS to as

53:47

30: Episode 30 - A Conversation with Steve Way

MDA Quest Podcast ·

2023/06/23

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: Steve is a 32-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

54:09

29: Episode 29 - Expert Accessible Travel Tips for...

MDA Quest Podcast ·

2023/05/15

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 experiences, expertise, and advice when it comes to accessible travel. Transcript Guests: Sylvia Longmire is an award-winning accessible travel writer and photographer, a service-disabled Air Force

43:37

28: Episode 28 - There is No Such Thing as Normal

MDA Quest Podcast ·

2023/04/14

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 Normal" and "Lovely as Can Be", Megan teaches children the ways in which everyone is unique and that our differences are what make us special. She joins the Quest Podcast to talk about the importance of

55:50

27: Episode 27 - The Changing Landscape of...

MDA Quest Podcast ·

2023/03/14

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 neuromuscular neurologist and neruogenetics expert, to discuss what these changes mean to our community as he shares his advice, insights, and expertise on the changing landscape of neuromuscular

43:35

26: Episode 26 - Catching Up with Bill Crossland

MDA Quest Podcast ·

2023/02/15

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 feature-length-film "Catching Up". His movie is available to stream on for free on Tubi and Amazon Prime. You can watch the official trailer here: https://www.youtube.com/watch?v=0QrNnmlVqaI. (Note: "Catching

65:27

25: Episode 25 - New Year, New Mindset

MDA Quest Podcast ·

2023/01/17

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 #1 best-selling author of “Don't Let Your Struggle Become Your Standard." Jose speaks all over the world, sharing his experience of growing up with a physical "disability" and how you can use the power of

49:50

24: Episode 24 - Embracing Life with a Disability

MDA Quest Podcast ·

2022/12/15

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. Estela and Lainie bring their incredible chemistry and personality to our discussion on living with a disability, parenting, business, fashion, their podcast and workshops, and their over-arching goal to rebrand

53:27

23: Episode 23 - Advocacy, Accessibility, and the DOT

MDA Quest Podcast ·

2022/11/16

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 director of disability policy at MDA. Both guests play active roles in advocating for the rights of people with disabilities and for meaningful advances in accessible air travel and transportation policies. In

24:33

22: Episode 22 – Creating an Inclusive Work Environment

MDA Quest Podcast ·

2022/10/11

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 disability community. In this episode, Sarah Bernard, the co-founder and chief operating officer at Inclusively, shares her expertise on the importance of inclusion and accessibility in the workplace – and

29:43

21: Episode 21 – MDA Let's Play - A Community for...

MDA Quest Podcast ·

2022/09/09

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 watched MDA Let's Play online events on Twitch. I chat with Larry Leiberman, the founder of MDA Let’s Play, Kenny Small (AKA Beaniez), the program manager and host of MDA Let’s Play, and Charlie Mabry, a

21:09

20: Episode 20 - Lights, Camera, Action...and...

MDA Quest Podcast ·

2022/08/11

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 part of a worldwide casting call to star in the upcoming Netflix adaptation of 13: The Musical, premiering August 12th. Jonathan also joined the cast of the Will Farrell produced musical comedy Theater Camp. He

47:38

19: Episode 19 - Lights, Camera, Action - and...

MDA Quest Podcast ·

2022/07/12

James Ian is a singer, songwriter, multi-instrumentalist, actor and writer who lives with spinal muscular atrophy (SMA). His song "Spaces" has over 744,000 views on YouTube and highlights the lives of others living with SMA. He worked with Genentech, a three-time Grammy nominated producer, and an executive at Universal Music to create this incredible song and video. Ian shares his experience living with a nueromuscular disease, his passion for his multitude of creative projects, and why it's so

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MDA Quest Podcast

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