PODCAST

MDA Quest Podcast

Muscular Dystrophy Association

The official podcast for the Muscular Dystrophy Association

health & fitness medicine

All Episodes

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

20:21

18: Episode 18 - Lights, Camera, Action - and...

MDA Quest Podcast ·

2022/07/11

Born with a rare form of neuromuscular disease, Leah Zelaya faced a host of challenges including medical claims that she would possibly never walk. In spite of these obstacles, Leah learned to believe in her abilities. Through strenuous physical therapy and determination, she is now able to ambulate with forearm crutches. Leah has taken that determination and applied it to sports and the arts. Leah is a dancer, cyclist, actor, model, and advocate for the community of individuals with disabilities

41:00

17: Episode 17: The ABCs of Accessible Travel

MDA Quest Podcast ·

2022/06/16

Today's guest is Lorraine Woodward, an entrepreneur, business owner, and life-long advocate for people with disabilities. She is the creator of multiple businesses, services, and foundations. An avid traveler, she created an accessible vacation home at Carolina Beach, NC, for her family to enjoy and to serve as a short-term rental home for other travelers in need of an accessible location. She recognized a serious lack of accessible vacation homes, which led to her newest endeavor: Becoming

50:19

16: Episode 16: Turning Pain into Purpose - An ALS...

MDA Quest Podcast ·

2022/05/19

Sabrina Johnson lost her dad to ALS in 2019. In this episode, she shares how she turned her pain into purpose and became an ALS advocate. The journey to diagnosis was hard enough, but watching her dad battle a terminal disease forever changed her. After a lightbulb moment, she decided to turn her anger into ambition and became an advocate for patients and families with ALS. In 2021, she founded Sabrina Johnson Advocate LLC to provide support, resources, and guidance to others who are navigating life

46:03

15: Episode 15: Power of ALS Registries

MDA Quest Podcast ·

2022/05/10

Today we are connecting with the key players of two national ALS Registries to discuss the power that these registries harness to better understanding this disease, trends, and potential treatments. We will be speaking with Dr. Paul Mehta, the Principal Investigator for the United States congressionally-mandated National Amyotrophic Lateral Sclerosis (ALS) Registry. A registry database which resides within the Centers for Disease Control and Prevention and is responsible for providing medical,

50:48

14: Episode 14: Know Your Rights - A Conversation...

MDA Quest Podcast ·

2022/04/19

Judith (Judy) Heumann is a lifelong advocate for the rights of disabled people and is often referred to as "the MLK of the disability civil rights movement". She has played a role in the development and implementation of major legislation including the IDEA, Section 504, the Americans with Disability Act and the Convention on the Rights of Persons with Disabilities. Judy has published multiple books, and has been featured in numerous documentaries, including the acclaimed "Crip Camp." From 1993 to

64:54

13: Episode 13: Parenting

MDA Quest Podcast ·

2022/03/09

Parenting is one of the toughest jobs on the planet. It is also one of the best, most rewarding, incredible things you can do. In this episode, we invite you to listen to our coffee-talk about three personal journeys through motherhood with a neuromuscular disease. Each of our stories is different, and we hope that each will bring you joy and encouragement. Please know, this conversation is specific to our own, individual journeys and is NOT intended to be used as medical advice or medical fact for

55:53

12: Episode 12: Love & Marriage

MDA Quest Podcast ·

2022/02/04

Today in the spirit of Valentine's Day, we are talking with two married couples about their dating and eventual marriage. Under most circumstances, dating and marriage can be full of highs and lows, and when you throw a disability into the equation, there can be some unique challenges for the couple to work through. Today we're going to benefit from all the wisdom these two couples have to share. Transcript Guests: Amy and Jamie Shinneman met in high school when she was a freshman and he

54:30

11: Episode 11: Siblings Tell All

MDA Quest Podcast ·

2022/01/11

Having a sibling can be amazing. Siblings can be built-in playmates and best-friends, your partner in crime and a constant in an individual's life. Siblings represent deep-roots and home for the entire life journey they embark on together. But sibling relationships are not without complications. In this episode, we are talking to sibling pairs where one of the siblings has a neuromuscular condition and the other does not. We'll explore the dynamics and speak with the siblings as well as a resident

53:33

10: Episode 10: Holiday Do-it-Yourself Gifts, Crafts...

MDA Quest Podcast ·

2021/12/03

Need a last-minute gift-giving idea? You’re in luck because in this episode, we are talking all about fun do-it-yourself crafts and gift-giving, recipes and more. We have two guests joining us who are known for their art, entertaining and baking skills and we are all sharing ideas for how to make do-it-yourself easy AND accessible. Campfire Bars Recipe by Therese Gabriel Homemade Holiday Gifts Transcript Guests: Casey Stark lives in the Milwaukee Suburbs with her roommate Matt and

30:07

9: Episode 9 - Combating the Stress of the Holidays

MDA Quest Podcast ·

2021/12/03

The holidays can be a fun, festive time of year. There are decorations, music, parties, food...but for many, the holidays can be an incredibly stressful time. And when dealing with an illness or disability, like a neuromuscular disease, while the holidays can still be lots of fun, there are also additional circumstances that can increase our stress. In this episode, we will tackle some of these difficult topics and provide some suggestions for how to handle holiday stress. Transcript Paige

33:48

8: Episode 8: Access to the World: Accessibility in...

MDA Quest Podcast ·

2021/11/18

This month, we continue our series on "Access to the World," with a look at architecture. In this episode, Mindy speaks with Dominic Marinelli. Dominic is talking all about building codes in commercial architecture to make buildings accessible, how those codes change and evolve year to year, and how we can all do our part to make buildings more accessible. Transcript Guests: 1. Dominic Marinelli has been with the United Spinal Association for 25 years. Mr. Marinelli provides continuing

46:57

7: Episode 7: Access to the World: Accessibility in...

MDA Quest Podcast ·

2021/11/18

This month, we continue our series on “Access to the World,” with a look at architecture. In this episode, Mindy speaks with Paul Robertson who lives with Limb Girdle Muscular Dystrophy, type 2J. Paul recently built a new home to suit his changing mobility and joins us to discuss the building process and what he did to make his new home accessible. Transcript Guests: 1. Paul Robertson is a businessman and entrepreneur from Maryland. He was diagnosed with limb girdle muscular dystrophy is in

49:57

6: Episode 6: Talent for Hire!

MDA Quest Podcast ·

2021/10/08

October is Disability Employment Awareness Month, so on this episode of Quest Podcast, we’re exploring the world of employment for individuals with disabilities. Despite a huge talent-pool of candidates in the U.S., only approximately 29% of individuals with disabilities hold positions in the current workforce. In this conversation, we’re discussing why that is, what is being done to improve that statistic and how we can all use our voices to make a difference. For more information, watch this

24:16

5: Episode 5: Access to the World: Hotels

MDA Quest Podcast ·

2021/09/08

This next episode in our "Access to the World" series focuses on hotel accommodations for individuals with disabilities. accessibleGO is a travel website, specializing in accommodations for disabled travelers. During this conversation we discuss the challenges involved in making travel arrangements for those with special accessibility needs and how accessibleGo is helping to solve the problem to make travel easier for individuals with disabilities. Because we like to focus on solutions around here,

36:09

4: Episode 4: Access to the World: Air Travel

MDA Quest Podcast ·

2021/09/08

The second in our "Access to the World" series, this episode focuses on the unique challenges air travel presents to individuals who use wheelchairs. We will discuss the current state of air travel and the inconvenience, and emotional strain it causes travelers who use wheelchairs. Then, we turn the tables to talk about solutions. The work that is being done around legislation and aircraft crash-testing and modification is phenomenal, but these things take a village to bring to fruition. Our guests

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