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 X for more stories like this,…
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…
Discussion
Scientists now have evidence to explain why treatment with the corticosteroid prednisone — but not the newer steroid Agamree (vamorolone) — drives bone loss in young boys with Duchenne muscular dystrophy (DMD) and may slow their growth. Using data from a clinical trial, the researchers found that…
Discussion
I have lived with limb-girdle muscular dystrophy (LGMD) type 2E/R4 for more than 40 years. Initially, apart from stretching and visiting a neuromuscular clinic twice a year, I didn’t think much about managing my symptom progression. So much has changed. In January 2024, I was forced to put my…
Discussion
With seven children — Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4; three of whom have Duchenne muscular dystrophy (DMD) — I have entered the zone of a veteran parent and caregiver. Max, Rowen, and Charlie were diagnosed with DMD in…
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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