The official podcast for the Muscular Dystrophy Association
…
continue reading
![Artwork](/static/images/128pixel.png)
1
43: Episode 43 - Disrupting the Narrative
46:38
46:38
Play later
Play later
Lists
Like
Liked
46:38
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…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
42: Episode 42 - Empowering Individuality with Inclusive Style
39:44
39:44
Play later
Play later
Lists
Like
Liked
39:44
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 d…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
41: Episode 41 - Courage Kindled: A Hero’s Unbreakable Spirit
51:29
51:29
Play later
Play later
Lists
Like
Liked
51:29
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 experie…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
40: Episode 40 - Unlocking Access and Inspiring Action with Sophie Morgan
49:06
49:06
Play later
Play later
Lists
Like
Liked
49:06
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
39: Episode 39 - Behind the Scenes: A Look at the Science and Research for New Treatments
50:13
50:13
Play later
Play later
Lists
Like
Liked
50:13
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 eventu…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
38: Episode 38 - Love Made Simple, with Alexa and Jacqueline Child of Dateability
43:00
43:00
Play later
Play later
Lists
Like
Liked
43:00
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…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
37: Episode 37 - How to find Meaning and Fulfillment with Isaac Banks
54:19
54:19
Play later
Play later
Lists
Like
Liked
54:19
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 a…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
36: Episode 36 - Wrapping Up 2023 with Leah and Amy
41:44
41:44
Play later
Play later
Lists
Like
Liked
41:44
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. Thes…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
35: Episode 35 - Bridging the Gap Between Intention, Action, and Community Inclusion
43:21
43:21
Play later
Play later
Lists
Like
Liked
43:21
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
34: Episode 34 - Job Searching, Interviewing, and Employment with a Disability
46:48
46:48
Play later
Play later
Lists
Like
Liked
46:48
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 a…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
33: Episode 33 - Wheelchair Barbie Talks Advocacy & Inclusion
1:01:10
1:01:10
Play later
Play later
Lists
Like
Liked
1:01:10
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 adv…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
32: Episode 32 - Accessible Air Travel and Advocacy Updates
1:03:28
1:03:28
Play later
Play later
Lists
Like
Liked
1:03:28
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
31: Episode 31 - ALS Podcast with Brooke Eby
48:00
48:00
Play later
Play later
Lists
Like
Liked
48:00
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
30: Episode 30 - A Conversation with Steve Way
53:47
53:47
Play later
Play later
Lists
Like
Liked
53:47
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 spea…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
29: Episode 29 - Expert Accessible Travel Tips for Your Next Vacation (Travel with Sylvia & Cory)
54:09
54:09
Play later
Play later
Lists
Like
Liked
54:09
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
28: Episode 28 - There is No Such Thing as Normal
43:37
43:37
Play later
Play later
Lists
Like
Liked
43:37
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 childre…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
27: Episode 27 - The Changing Landscape of Neuromuscular Care
55:50
55:50
Play later
Play later
Lists
Like
Liked
55:50
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
26: Episode 26 - Catching Up with Bill Crossland
43:35
43:35
Play later
Play later
Lists
Like
Liked
43:35
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
25: Episode 25 - New Year, New Mindset
1:05:27
1:05:27
Play later
Play later
Lists
Like
Liked
1:05:27
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 Bec…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
24: Episode 24 - Embracing Life with a Disability
49:50
49:50
Play later
Play later
Lists
Like
Liked
49:50
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 per…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
23: Episode 23 - Advocacy, Accessibility, and the DOT
53:27
53:27
Play later
Play later
Lists
Like
Liked
53:27
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
22: Episode 22 – Creating an Inclusive Work Environment
24:33
24:33
Play later
Play later
Lists
Like
Liked
24:33
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…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
21: Episode 21 – MDA Let's Play - A Community for Everyone
29:43
29:43
Play later
Play later
Lists
Like
Liked
29:43
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 w…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
20: Episode 20 - Lights, Camera, Action...and Accessibility: Part 3
21:09
21:09
Play later
Play later
Lists
Like
Liked
21:09
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…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
19: Episode 19 - Lights, Camera, Action - and Accessibility: Part 2
47:38
47:38
Play later
Play later
Lists
Like
Liked
47:38
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 incredib…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
18: Episode 18 - Lights, Camera, Action - and Accessibility: Part 1
20:21
20:21
Play later
Play later
Lists
Like
Liked
20:21
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 determ…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
17: Episode 17: The ABCs of Accessible Travel
41:00
41:00
Play later
Play later
Lists
Like
Liked
41:00
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 tr…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
16: Episode 16: Turning Pain into Purpose - An ALS Advocate's Story
50:19
50:19
Play later
Play later
Lists
Like
Liked
50:19
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 patie…
…
continue reading
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 Scleros…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
14: Episode 14: Know Your Rights - A Conversation with Judith Heumann
50:48
50:48
Play later
Play later
Lists
Like
Liked
50:48
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 …
…
continue reading
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 encou…
…
continue reading
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 fro…
…
continue reading
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 wher…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
10: Episode 10: Holiday Do-it-Yourself Gifts, Crafts & Recipes
53:33
53:33
Play later
Play later
Lists
Like
Liked
53:33
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 Re…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
9: Episode 9 - Combating the Stress of the Holidays
30:07
30:07
Play later
Play later
Lists
Like
Liked
30:07
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…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
7: Episode 7: Access to the World: Accessibility in Our Homes
46:57
46:57
Play later
Play later
Lists
Like
Liked
46:57
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.…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
8: Episode 8: Access to the World: Accessibility in Commercial Architecture
33:48
33:48
Play later
Play later
Lists
Like
Liked
33:48
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 acc…
…
continue reading
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 discussin…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
5: Episode 5: Access to the World: Hotels
24:16
24:16
Play later
Play later
Lists
Like
Liked
24:16
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…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
4: Episode 4: Access to the World: Air Travel
36:09
36:09
Play later
Play later
Lists
Like
Liked
36:09
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
3: Episode 3: Access to the World: We Carry Kevan
39:02
39:02
Play later
Play later
Lists
Like
Liked
39:02
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
2: Episode 2: Buses, Trains & Automobiles - Getting from Point A to Point B
39:10
39:10
Play later
Play later
Lists
Like
Liked
39:10
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 d…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
1: Episode 1 : The Beginning: Receiving a Diagnosis
51:13
51:13
Play later
Play later
Lists
Like
Liked
51:13
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 abou…
…
continue reading