Archives
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
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…
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…
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
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…
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
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
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.
Understanding Myotubular Myopathy (MTM)
Neurologist Perry Shieh, MD, PhD, answers questions about myotubular myopathy, its symptoms, diagnosis, and the search for safer gene therapy.
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