Celebrating a Milestone Year in MDA Advocacy

From major wins to improve air travel for people living with disabilities to ensuring the neuromuscular community had all the resources needed to vote in this year’s election, 2024 was a transformational year for MDA and its advocates. As we reflect on our 2024 accomplishments, we are grateful for the actions of all our advocacy…

Innovative Research: Spotlight on MDA Research Grant Recipients

Since its founding 75 years ago, the Muscular Dystrophy Association has funded over $1 billion in neuromuscular disease research leading to life-saving treatments. This year, the MDA granted nearly $5.5 million in funding for 21 new projects, including the following three: Antisense oligonucleotides (ASOs) to treat VCP disease Virginia Kimonis, MD, is a professor of…

Simply Stated: Emerging Therapies to Treat DMD

The rare genetic disorder Duchenne muscular dystrophy (DMD) occurs in approximately 1 in every 3,500 to 5,000 male births. Boys affected by DMD experience progressive degeneration and weakness of the skeletal muscles that control movement. In later stages of disease, they may also experience complications of the heart and respiratory muscles, which can be life-threatening.…

MDA Ambassador Guest Blog: How I Stay Active and Involved in My Community

Sundae Duyssen is 18 years old and lives in Western New York with her family, on their 800 acre cash crop farm.  She was diagnosed with congenital muscular dystrophy around the age of 2 and completed genetic testing at the age of 13, where it was discovered that she has type LMNA. She has been…

Neuromuscular Advocacy Collaborative at the 2025 MDA Clinical & Scientific Conference: Q&A with Paul Melmeyer

The 2025 MDA Clinical & Scientific Conference will be held March 16-19, 2025, at the Hilton Anatole in Dallas, Texas. This highly anticipated event will offer a hybrid format enabling participants to join either in person or virtually. The conference gathers distinguished researchers, clinicians, academics, advocates, and industry leaders, to foster discussions and advance discoveries…

Managing Medical Trauma

Adults and children living with neuromuscular disease can experience medical trauma, but there are ways to cope.

Letters from Leah: “Fin” (A Farewell Note)

Dear Friends, What an honor it has been to be one of MDA’s National Ambassadors! I will never forget all the amazing connections and friendships I have made along this journey. There have been many impactful pivotal moments in my time as an ambassador. I can’t believe how fast these two years have gone by.…

Ambassador Guest Blog: Cooking Tips & Tricks (Just in Time for the Holidays)

Barbara Ochoa is an animal lover and skilled home chef who lives in California. She loves to spend time with her husband and adult children on their farm and stay active in her community. She and two of her children live with myotonic dystrophy (DM) and her experience as patient and caretaker has made her…

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…

Get Cozy with Accessibility and Independence This Winter

With colder temperatures, variable weather conditions for travel, and shorter hours of daylight each day, winter often brings with it the season of spending more time staying inside and cozying up at home. And rest and relaxation are key elements to maintaining balance during the busy holidays – and throughout the year. These products 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. 

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 47- Wrapping Up 2024 with Leah and Ira

In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Ira Walker. Leah is a dedicated advocate  finishing her second year as a National Ambassador. Leah shares her journey and why she believes it is important to advocate for yourself and others. As Ira wraps up his first year…

Episode 46- Creating Beauty from your Dreams with Shakiira Rahaman

In this Quest Podcast episode, we chat with the Kira Cosmetics founder and entrepreneur, Shakiira Rahaman. Shakiira, who lives with muscular dystrophy. founded her make-up line in 2019 after a life changing event. She joins us to share her experiences, expertise, and advice when it comes to starting her own business, navigating life with a…

Episode 45- Making Space and Creating Pathways with Keely Cat-Wells

In this Quest Podcast episode, we chat with world-renowned advocate, entrepreneur, public speaker and educator, Keely Cat-Wells. She devotes her time and expertise to creating education and employment opportunities and inclusive spaces for those with disabilities – and delivers advice and inspires action while sharing stories of resilience and positivity. Keely is the founder and…