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MDA Ambassador Guest Blog: Accessible Air Travel is About More Than Getting from Point A to Point B
James (Jimmy) Grammig is a 23-year-old from Tampa, Florida. He was diagnosed with limb-girdle muscular dystrophy (LGMD) and has used a wheelchair since he was about 13 years old. He…
Clinical Research Alert: Clinical Study for Children and Teenagers with SMA
Researchers at argenx are conducting a phase 2 clinical trial (SPARKLE) for children and teenagers with spinal muscular atrophy (SMA). The study is designed to determine the appropriate dose of…
New Myotubular Myopathy Clinical Trial May Lead to Safer Gene Therapy
Researchers hope a gene therapy with a new adeno-associated virus (AAV) will deliver disease-modifying benefits without endangering the liver.
Tags: Clinical Trials, Drug Development, Featured Content, Gene Therapy, My Gene Therapy Journey, Research, Research Advances
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…
MDA’s Guide to the Fair Housing Act
How the Fair Housing Act makes disability discrimination illegal in renting or buying a home and promotes access to permanent and temporary housing.
Quest Podcast: Your Difference Is Your Superpower: A Conversation with Cerys Davage
In this episode of the Quest Podcast, we chat with Cerys Davage, a Welsh podcaster and content creator living with limb-girdle muscular dystrophy (LGMD), who has turned her diagnosis into…
Clinical Research Alert: Observational Study of Muscle Function and Structure in Individuals with BMD/DMD
Researchers at Carle Foundation Hospital in Urbana, IL are seeking individuals living with Becker or Duchenne muscular dystrophy (BMD/DMD) to participate in an observational study using Diffusion Tensor MRI to…
MDA Ambassador Guest Blog: Life Beyond the Ramp
Chloe Crabb lives in Colorado with spinal muscular atrophy (SMA). She is a high school freshman and absolutely loves all things related to education and advocacy. Chloe lives with her…
Access, Impact, and Connection at the MDA Clinical & Scientific Conference
MDA National Ambassador Lily Sander at the 2026 MDA Clinical & Scientific Conference The annual MDA Clinical & Scientific Conference is the largest global gathering of leading experts dedicated to…
Tags: Ambassadors, Community, Innovation, Lily, MDA Clinical and Scientific Conference, Research Advances
MDA Ambassador Guest Blog: The Power of Lasting Friendships
Cassidy Nilles is a 36-year-old living with LGMD 2J who lives in the suburbs of Chicago. Diagnosed at age 20, she started using a wheelchair after the birth of her…