Living Independently with a Disability

Tips, tricks, tools, and products from experts and members of the neuromuscular disease community to help you live independently with a disability.

MDA Ambassador Guest Blog: Celebrating and Supporting LGBTQ+

Rigo is an artist who studied at the Art Institute of Dallas. Although he has dealt with many challenges due to living with a neuromuscular disease, he likes to focus on what’s most important to him. He wants his artwork to advocate for people with disabilities and for it to tell others that things are…

Simply Stated: Updates in GNE Myopathy

GNE myopathy is an inherited neuromuscular disease (NMD) characterized by progressive atrophy (thinning) of the skeletal muscles. GNE myopathy was previously called hereditary inclusion body myopathy (HIBM) or Nonaka myopathy in some cases, until discovery of the genetic cause of the disease proved that all of these conditions were actually the same condition caused by…

MDA Ambassador Guest Blog: Embracing Inclusive Venues and Adventures

Justin Lopez is 30 years old. He currently lives in Toledo, Ohio, but originates from Farmington Hills, Michigan. Justin was diagnosed with Limb-girdle Muscular Dystrophy (LGMD 2B) at the age of 13. Justin is a son, brother, husband, and father. He has been an Operations Supervisor in the tech industry for the past six years.…

Find Accessible Beaches for Summer Fun

Beach destinations are recognizing that people with disabilities want to travel to accessible beaches. Here’s how to plan a wheelchair-friendly beach vacation.

Celebrating Recent Significant Milestones in Disability Rights

Over the past few months, we’ve witnessed two significant milestones in the history of disability rights law. In May, we were invited to attend an announcement marking the finalization of rulemaking to update Section 504 of the Rehabilitation Act of 1973. This was the first time the legislation had been updated in the 50 years…

Splash Into Accessible Swimming This Summer

Summertime often brings to mind sunshine, blue skies, cook-outs, yard games…and swimming! Having fun in the pool is a refreshing way to get exercise, socialize or relax, and cool off from the season’s hot temperatures. For most MDA Summer Camp attendees and alumni, swimming in the pool at camp consistently holds the number one spot…

Clinical Trial Alert: Phase 2 Pivotal Study of Sevasemten (EDG-5506) in Adults with Becker Muscular Dystrophy

Researchers at Edgewise Therapeutics are seeking adults living with Becker muscular dystrophy to participate in a global Phase 2 pivotal study, GRAND CANYON, to evaluate the safety and efficacy of sevasemten (EDG-5506) in adults with Becker. Sevasemten is an investigational oral pill designed to prevent contraction-induced muscle damage that occurs with daily activity in Becker. This…

Federal Appropriations: MDA and Neuromuscular Disease Community Priorities

Each year, Congress must create and pass legislation to fund the government’s operations and programs. This process is called the federal appropriations process and is a complex and often hard-to-predict system. It determines which programs that are important to the neuromuscular disease community are funded and how much money each program receives each year. Although…

MDA Ambassador Guest Blog: Fatherhood and Adaptive Parenting

Matt Curcio is a writer, speaker, and advocate. Matt lives in New Jersey with his wife, cats, and children. He lives with Collagen 6 Related Dystrophy. He specializes in traveling with a disability, self-advocacy, the intersection of faith and disability, and parenting while disabled. Nothing scared me more than the day that my wife and…

Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities.

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Building With Universal Design Is Good for Everyone

By Matt Alderton | May 10, 2024
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A Guide to Getting Involved in Adaptive Sports

By Charmaine Dymond | May 10, 2024
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Can Neuromuscular Disease Affect Your Bones?

By Myrna Traylor | May 10, 2024
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Writing About Adversity Leads to Unexpected Benefits

By Chris Anselmo | May 9, 2024
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Nature Lover With Myotonic Dystrophy Paints a Room With a View

By MDA Staff | May 9, 2024
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How to Get One-on-One Support From MDA

By MDA Staff | May 9, 2024
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QUEST PODCAST

The Quest podcast, proudly presented by the Muscular Dystrophy Association, is part of the Quest family of content. Hosted by Quest Editor-in-Chief, motivational speaker and writer Mindy Henderson.

See All Episodes

Episode 42- Empowering Individuality with Inclusive Style

June 4, 2024

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…

Episode 41- Courage Kindled: A Hero’s Unbreakable Spirit

May 1, 2024

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…

Episode 40- Unlocking Access and Inspiring Action with Sophie Morgan

April 22, 2024

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 co-founder of Making…