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Blog Post | Independence, Lifestyle, Personal Stories

Life with Lily: Preparing for College with a Neuromuscular Disease

As I prepared for college after graduating high school, my experience mirrored that of many young adults in several ways. Like my peers, I searched for a welcoming campus culture,…

Tags: Ambassador Guest Blog, Ambassadors, College, College Experience, Community, Life with Lily, Lily, Mental Health, Relationships, Young Adults


Blog Post | Health, Science + Research

FDA Approves First Muscle-Targeted Therapy for SMA: A Conversation with Dr. Se-Jin Lee

The FDA has approved Isembyld (apitegromab-mstn), the first therapy designed to target muscle health and regeneration in people living with spinal muscular atrophy (SMA). This milestone adds to the progress…

Tags: Drug Approval, Drug Development, Innovation, Research Advances


Blog Post | Independence, Lifestyle, News

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…

Tags: Accessible Air Travel, Clinical Trials, Community, Drug Development, Gene Therapy


Blog Post | Advocacy, News, Tools & Resources

Your Voice, Your Vote

Voting is more than a civic responsibility. It is a declaration of presence, power, and participation. The decisions made by elected officials touch nearly every aspect of our lives—from access…

Tags: Advocacy Updates, Community


Blog Post | Independence, Personal Stories

MDA Ambassador Guest Blog: Technology as a Tool for Independence

Kareem Azzazi is a 38-year-old content creator from Minnesota living with Duchenne Muscular Dystrophy. He uses eye-tracking technology to write, stream, play games, and create content online as TheSaturverse. Kareem…

Tags: Ambassador Guest Blog, Ambassadors, Mental Health, Resources, Young Adults


Blog Post | Independence, Lifestyle, News, Personal Stories

Donnie Demers: The Man Behind the Music

Donnie Demers performing at the Global Green Pre-Oscar Gala (Photo from Donnie’s Facebook page) When looking at the list of accomplishments and accolades that musician and multi-platinum selling song-writer Donnie…

Tags: Community


Blog Post | Advocacy, Inclusion, Independence

MDA’s Guide to the Air Carrier Access Act

How the Air Carrier Access Act (ACAA) gives people with disabilities the right to air travel and protects people who fly with wheelchairs and scooters.

Tags: Accessible Air Travel, Disability Legislation, Featured Content, MDA Resource Center, Resources, Travel


Featured Article | Health, Inclusion

How to Find an Accessible Obstetrician-Gynecologist (OB/GYN)

Questions about equipment, transfers, positioning, and telehealth can help women with neuromuscular diseases find accessible OB/GYN care that fits well.

Tags: Equipment and Assistive Devices, Healthcare, Thrive 365, Young Adults


Featured Article | Science + Research

Understanding Myotubular Myopathy (MTM)

Neurologist Perry Shieh, MD, PhD, answers questions about myotubular myopathy, its symptoms, diagnosis, and the search for safer gene therapy.

Tags: Clinical Trials, Gene Therapy, MDA Care Centers, Research, Spotlight


Featured Article | Advocacy, Independence, Personal Stories

Attorney Ed Barocas Lives with a Sense of Justice and a Sense of Humor

Civil rights attorney and musician Ed Barocas shares how disability advocacy, creativity, and embracing mobility equipment shaped his success.

Tags: Employment, Quest for Success