Two interconnected themes — community and hope — dominated conversations at this year's MDA Engage symposium in Dallas.

For columnist Betty Vertin's 19-year-old son, Chance, becoming a caregiver to his brothers has benefited the entire family.

Choosing assistive equipment for a neuromuscular disease patient starts with understanding goals, environment, and needs, ...

Struggling with increasing leg weakness due to FSHD progression, columnist Robin Stemple turned to what he calls the "knee ...

Share this page with email Share this page on Facebook Share this page on X Share this page on Reddit Print Preferred Source on Google Last Friday, my girlfriend, Amanda Yip, and I celebrated the ...

Lily Sander will never forget what it was like to meet other people with neuromuscular diseases the first time she attended Muscular Dystrophy Association (MDA) Summer Camp. Living with ...

Share this page with email Share this page on Facebook Share this page on X Share this page on Reddit Print Preferred Source on Google It seems to be a theme in our lives: Lifts and elevators work ...

The U.S. Food and Drug Administration (FDA) has given the go-ahead for a mid-stage clinical trial testing the oral therapy forazapadin — designed to protect muscles and potentially enhance their ...

Last week, I traveled with my sons Max, Rowen, and Charlie to Colorado for their multidisciplinary neuromuscular clinic visit at a children’s hospital. My husband and I typically don’t both travel ...

A few days ago, my friend Reena Deen, a disabled independent filmmaker with complex post-traumatic stress disorder and dyslexia, shared with me that her film “The Damned Ones” was selected for the ...

A Phase 3 clinical trial testing delpacibart etedesiran (del-desiran), an experimental treatment for myotonic dystrophy type 1 (DM1), failed to hit its main goal. The Phase 3 HARBOR trial (NCT06411288 ...