In recognition of Muscular Dystrophy Awareness Month in September, the Muscular Dystrophy Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, or…
Discussion
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 After Dark Program at the 2026 Torino Underground Cinefest. “The Damned Ones” is a mystery…
Discussion
Facioscapulohumeral muscular dystrophy (FSHD) and other health issues make it difficult for me to move these days. It’s hard to reposition myself when I’m sitting down. Standing to transfer now requires a seat that’s 22 inches or higher. It’s challenging to turn my feet to move from my wheelchair…
Discussion
Twenty college students with Duchenne muscular dystrophy (DMD) will receive awards of up to $5,000 through Sarepta Therapeutics‘ Route 79 program. “As we mark the ninth year of this program, we continue to be inspired by the commitment these students show to their education and their futures,” Diane…
Discussion
My life is always in motion, and we are in a busy season as my family prepares to move into a new house, one that is being modified for accessibility. I share my life with my husband, Jason, and our seven children: Lexi, 25; Max, 20; Chance, 19; Rowen,…
Discussion
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) enrolled nearly 160 people with DM1, ages 16 to 65. Participants received seven infusions of either del-desiran or…
Becoming educated and informed about muscular dystrophy is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your muscular dystrophy journey.
There is no cure for muscular dystrophy yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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