Archives

New digital health technologies and wearables can improve research and access to clinical trials for people with neuromuscular diseases.

Titinopathies researcher Bjarne Udd, MD, PhD, details progress on neuromuscular disorders associated with the Titin (TTN) gene.

Advice on how to plan ahead for long-term care needs and a stable financial future with a progressive neuromuscular disease.

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…

Cassidy Nilles is 34 years old and lives in Illinois. Cassidy lives with Limb Girdle muscular dystrophy (LGMD) type 2J. She lives with her daughter, Capri, and their 9-year-old maltipoo,…

SELENON (SEPN1)-related myopathy (SELENON-RM) is a rare congenital neuromuscular condition characterized by slowly progressive axial (trunk and head) muscle weakness, early-onset rigidity of the spine, scoliosis (sideways curve of the spine),…

Branden Leimbach is 26 years old. He is a born and raised Nebraskan. Branden was diagnosed with Mitochondrial Myopathy at the young age of 6. He has a degree in…

A national caregiver shortage makes finding in-home caregivers a challenge for people with disabilities. Advocacy can help lead to solutions.

Genes play a role in ALS (Lou Gehrig’s disease), but so do nongenetic risk factors. Here’s what scientists know about what causes ALS.

In this Quest Podcast episode, we chat with a retired US Army veteran and firefighter, Ken Sutcliffe and his wife, Andi. He has devoted his career to saving lives but…