Last week, I lost my dear friend Aloysius Teo, who passed away at the age of 40. Aloysius didn’t have Duchenne muscular dystrophy, the progressive genetic condition I was born with, which weakens muscles over time, including those used for breathing and heart function. I use a wheelchair…
Discussion
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 regeneration — in adults with facioscapulohumeral muscular dystrophy (FSHD), marked by muscle weakness that particularly affects the face,…
Discussion
Managing my condition is a full-time job. Muscular dystrophy (MD) has woven its way into more than just my muscles. It takes a mental toll as time goes by. The hours tick away. The cells tick away. I was 12 when I learned of my diagnosis. I…
Discussion
For many people living with rare neuromuscular diseases, the most meaningful part of a recent Chicago gathering was not just the medical updates — it was finding a community that understood their daily struggles. The realization that they were not alone set the tone for MDA Engage: Chicago, a…
Discussion
It’s been a big week for the Vertin Party of 9. We moved into our new home, and after only a week, the blessings seem boundless. I’m so thankful to share this because, as you can imagine, moving a large family is a tremendous undertaking. My husband, Jason, and I have…
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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