Archives

Paramyotonia congenita (also known as Von Eulenberg disease) is a rare inherited disorder that causes episodes of muscle weakness, stiffness, or paralysis (inability to move). These episodes typically affect the…

Mo Gerhardt at a Michigan State University football game. Mo Gerhardt is changing the game when it comes to accessible and inclusive fashion. The 48-year-old retired Michigan State University (MSU)…

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…

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…

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…

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,…

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…

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…

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…

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…