Muscular Dystrophy Association Launches Quest Podcast with Mindy Henderson
Initial topics on the Quest Podcast will include the diagnostic odyssey and living with a neuromuscular disease; transportation issues for people with disabilities; and the unique accomplishments of Kevan Chandler who lives with SMA, aka “We Carry Kevan.”
NEW YORK, NY – August 10, 2021 – The Muscular Dystrophy Association (MDA) today announced the launch of the MDA Quest Podcast, a powerful vehicle to present thoughtful conversation regarding issues and barriers facing members of the neuromuscular disease (NMD) and other disability communities as well as the people who love them. The podcasts will educate and inform, demystify, inspire, perpetuate progress and entertain. Motivational speaker, author, writer and podcast host, Mindy Henderson, who lives with spinal muscular atrophy (SMA), is the host of the MDA Quest Podcast. As of this week, Mindy has also been named the MDA Editor-in-Chief of Quest content, including a quarterly magazine, blog, newsletter and this podcast.
“We created the Quest Podcast to shine a light on the lives of people who live with a disability,” said Henderson. “The podcast format will make it possible for us to take a deep dive into the issues affecting our community and the topics that are on everyone’s mind, like travel, dating, accessibility in architecture and employment, to name a few.”
“We are proud to launch the Quest Podcast hosted by the amazing Mindy Henderson,” said Kristine Welker, Chief of Staff for MDA. “As part of our ‘Disability as Diversity’ movement, this podcast will not only be empowering for people with disabilities, it will also serve as a tool of education and insight for a broader audience, to help everyone start to see a world where inclusion is the norm and people see possibilities instead of limitations.”
The Quest Podcast episodes launch with these three episodes, followed by monthly episodes. Future topics will include universal architecture, dating and relationships, employment, accessible travel and more.
Quest Podcast Episode 1: The Beginning: Receiving a Diagnosis
Summary: For anyone with NMD, the journey begins with a diagnosis. We 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 talk about each of their stories and the path they took to get a diagnosis, how it impacted their lives, how they have learned to live with it, what has been hard, what has been easy-er and how they have coped and made a life that works for them.
Guests: Paloma Juarez, mother of Vaun, 5 years old, and twins Koen and Zavier, almost 10 months old. Vaun and Koen both have infantile onset Pompe disease.
Chris Anselmo, who works at the Muscular Dystrophy Association (MDA) and was diagnosed with limb-girdle muscular dystrophy type 2B (LGMD2B) when he was 18 years old.
Quest Podcast Episode 2: Buses, Trains & Automobiles: Getting from Point A to Point B
Summary: For anyone with NMD, getting from one place to another can be a challenge. We will discuss the challenges associated with both driving and public transportation, how to explore the available options and what considerations to keep in mind. We will also educate listeners about how to advocate for better transportation options in their cities and towns.
Guests: Jessica Murray, who earned her Ph.D. in Developmental Psychology at The Graduate Center, CUNY in 2020, focuses her research on daily travel and the ways that inaccessibility limits the fulfillment of psychological needs for autonomy, relatedness, and competence among people with disabilities. Chad Strowmatt, an Occupational Therapist with 33 years of experience who owns and operates Strowmatt Rehabilitation Services. Chad has experience in the adaptive equipment options required to help people accommodate for changes in physical function.
Quest Podcast Episode 3: Access to the World: We Carry Kevan
Summary: For individuals with NMD or any disability, travel is complicated by all kinds of logistical issues and accessibility barriers. Kevan Chandler, who lives with SMA, and his 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 being tethered to a wheelchair. The backpack allowed his friends to carry him, accessing the parts of these countries he would not have been able to experience from his wheelchair. They have created two documentaries from footage shot from these trips.
Guests: Kevan Chandler and Luke Thompson (video production and friend of Kevan), of "We Carry Kevan," a nonprofit organization with the mission to mobilize individuals with disabilities by redefining accessibility as a cooperative effort through investment, interaction, and innovation. They have filmed two documentaries about their adventures traveling to Europe and China, and Kevan has written a book also titled "We Carry Kevan."
“Luke and I are excited to share some of our story with Mindy and the Quest Podcast audience,” said Kevan. “I’ve been blessed by so many amazing friends who make life an adventure with me, and we love sharing these stories with others.”
For more information visit: https://www.mda.org/podcast
The MDA Quest Podcast is available for download here:
About the Muscular Dystrophy Association
For 70 years, the Muscular Dystrophy Association (MDA) has been committed to transforming the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA's MOVR is the first and only data hub that aggregates clinical, genetic, and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development. MDA supports the largest network of multidisciplinary clinics providing best-in-class care at more than 150 of the nation's top medical institutions. Our Resource Center serves the community with one-on-one specialized support, and we offer educational conferences, events, and materials for families and healthcare providers. MDA Advocacy supports equal access for our community, and each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families. During the COVID-19 pandemic, MDA continues to produce virtual events and programming to support our community when in-person events and activities are not possible. MDA’s COVID-19 guidelines and virtual events are posted at mda.org/COVID19. For more information, visit mda.org.