PODCAST

MDA Quest Podcast

Muscular Dystrophy Association

The official podcast for the Muscular Dystrophy Association

health & fitness medicine

All Episodes

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

39:02

3: Episode 3: Access to the World: We Carry Kevan

MDA Quest Podcast ·

2021/07/20

For individuals with NMD, or any disability, travel is complicated by all kinds of logistical issues and accessibility barriers. There are places and experiences that are "off-limits" to individuals who use wheelchairs because certain destinations just aren’t accessible, or accessible enough. Kevan and friends have broken through those barriers by creating a nonprofit organization that developed a special "adult-size" backpack so that Kevan and his friends could go explore Europe and China, without

39:10

2: Episode 2: Buses, Trains & Automobiles - Getting...

MDA Quest Podcast ·

2021/06/22

For anyone with NMD or other disabilities, getting from one place to another can be a challenge. On today's episode of Quest Podcast, we will be discussing the various options in accessible ground transportation, from driving adapted vehicles, to riding on buses and trains. We'll examine the various modes of transportation, what systems have been designed well and which ones...maybe leave a little to be desired...and how YOU can get involved to advocate for improvements to public

51:13

1: Episode 1 : The Beginning: Receiving a Diagnosis

MDA Quest Podcast ·

2021/06/10

For anyone with NMD, the journey begins with a diagnosis…a name for the symptoms that are manifesting. In this episode, we will dive into that conversation from multiple perspectives - an individual diagnosed in infancy, an individual diagnosed in early adulthood and a parent who went on the journey as an advocate for their child. We will talk about each of their stories and the path they took to get a diagnosis, how it impacted their lives, how they’ve learned to live with it, what’s been hard,

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