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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…
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How I Drive with Duchenne Muscular Dystrophy: Adaptive Vehicles and Independence
Written by Hawken Miller Driving opens a world of possibilities for young men with Duchenne muscular dystrophy. It’s been life changing for me. Below you’ll find my story about finding an accessible vehicle, getting behind the wheel, plus suggestions on who to reach out to for more information our resources. And reminder: my story may not be…
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A close friend’s death prompts reflections on my own life and mortality
Last week, I lost my dear friend Aloysius Teo, who passed away at the age of 40. Aloysius didn’t have Duchenne muscular dystrophy, the progressive genetic condition I was born with, which weakens muscles over time, including those used for breathing and heart function. I use a wheelchair and depend on a BiPAP ventilator around…
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Quest Podcast: A Conversation with Steve Way, Part 2: Medicaid, Self-Advocacy, and the Life You Want
In this episode of Quest Podcast, actor, comedian, and disability advocate Steve Way returns to continue our conversation, this time getting even more personal about his own reliance on home and community-based services and what independence really requires. Steve explains how these services make everything possible, from getting out of bed to doing his job,…
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FDA OKs trial testing treatment for muscle regeneration in FSHD adults
The U.S. Food and Drug Administration (FDA) has given the go-ahead for a mid-stage clinical trial testing the oral therapy forazapadin — designed to protect muscles and potentially enhance their regeneration — in adults with facioscapulohumeral muscular dystrophy (FSHD), marked by muscle weakness that particularly affects the face, shoulders, and upper arms. Satellos Bioscience, the…
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Clinical Research Alert: Observational Study of MRI/MRS Measures in Boys with DMD
Researchers at the University of Florida are seeking non-ambulatory boys living with Duchenne muscular dystrophy (DMD) to participate in a study evaluating advanced imaging techniques. The goal is to determine whether these techniques can be used in future clinical trials to assess new therapies aimed at improving muscle and cardiac health in people with DMD. About…
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Reporting Back from MDA’s First-Ever Advocacy Captain Hill Day
On September 29 – 30, 2026, advocates returned to Washington D.C. for a Hill Day specifically geared to those in the MDA Advocacy Captain (MAC) program. From as far away as Alaska, MAC members from across the country traveled to the nation’s capital to urge lawmakers to support policies that will empower the neuromuscular community,…
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MDA Ambassador Guest Blog: Never Let Your Limitations Be Your Limit: Transitioning from College to a Career with a Disability
Sydney Horak lives in Texas and is diagnosed with spinal muscular atrophy (SMA). She earned a master’s degree in Management Information Systems and bachelor’s degrees in Accounting and Business Honors from Texas A&M University and now works in Digital Assurance and Transparency at PwC in Houston. FUN FACT: Sydney is also a children’s book author…
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I have many full-time jobs, and managing MD is only one of them
Managing my condition is a full-time job. Muscular dystrophy (MD) has woven its way into more than just my muscles. It takes a mental toll as time goes by. The hours tick away. The cells tick away. I was 12 when I learned of my diagnosis. I barely thought about what it meant. It wasn’t…
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Capricor shares new data on arm and hand function with deramiocel
Capricor Therapeutics presented data from HOPE-3 Open Label Extension study at the 2026 World Muscle Society Congress indicating that deramiocel treatment is associated with a slower decline in upper limb function. https://www.capricor.com/investors/news-events/press-releases/detail/356/capricor-therapeutics-presents-positive-hope-3-open-label The post Capricor shares new data on arm and hand function with deramiocel appeared first on CureDuchenne.
