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…

In Case You Missed It…

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. With so many valuable…

Episode 42- Empowering Individuality with Inclusive Style

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…

Sponsors Share in MDA Summer Camp Magic

For many youths living with neuromuscular disease, MDA Summer Camp is the highlight of the summer. The free, week-long, sleep-away camp provides a place for campers to participate in accessible activities and create lasting friendships with their peers and counselors while gaining independence and confidence, and – most importantly – having fun. The camp program…

MDA Ambassador Guest Blog: Finding Hope and Optimism in New Treatments

Chase Rankin was diagnosed with Friedreich’s ataxia in 7th grade. He is now majoring in Communication Studies at the University of North Carolina at Charlotte. I’ll be completely honest: I used to not be very optimistic when it came to clinical trials. I would hear news of an ongoing clinical trial for a promising new…

FAA Reauthorization is Law: Major Victory for Accessible Air Travel!

MDA Advocacy has some exciting and impactful news to share out of Washington, DC! The recent passage of the FAA Reauthorization Act marks a significant milestone in making air travel more accessible for all, particularly for those in the neuromuscular disease community and the broader disability community. From lawmakers to advocates, the journey to this…

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.

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.

Episode 42- Empowering Individuality with Inclusive Style

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

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

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…