Archives
MDA Ambassador Guest Blog: A Different Kind of Adventure – The Ups & Downs of Living with LGMD
William Quickel lives in East Tennessee. He was diagnosed with a rare form of limb-girdle muscular dystrophy (LGMD) in 2021, when he was 27 years old. He has shared his…
Tags: Ambassador Guest Blog, Ambassadors
Quest Podcast: More CMT Clinical Trials Than Ever Before: Inside the Research Turning Point
In this episode of Quest Podcast, we chat with Sue Bruhn, PhD, CEO of the Charcot-Marie-Tooth Association (CMTA); Stephan Züchner, MD, PhD, Chief Genomics Officer at the University of Miami…
Tags: Clinical Trials, Community, Drug Approval, Gene Therapy, Healthcare, Innovation, Research, Research Advances, Resources
Newborn Screening & Early Access to Treatment: The Rogers Family SMA Story
SMA testing was added to the federal Recommended Uniform Screening Panel (RUSP) in July 2018, but was not adopted in all 50 states until 2024. Newborn screening plays a pivotal…
Tags: Healthcare, Newborn Screening, Parenting
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
Quest Podcast: A Conversation with Steve Way, Part 1: Inside Hulu’s Furious
In this Quest Podcast episode, we sit down with actor, comedian, and disability advocate Steve Way, currently starring as Alden in Hulu’s hit thriller Furious. Steve talks about how the…
Tags: Mental Health, Relationships, Young Adults