Tuesdays are my writing days. My column publishes on Fridays, and the draft is due early Wednesday morning, so I write on Tuesdays. I should be a column or two ahead, but I’m a busy mom, and it never works out. My husband of 25 years, Jason, and I share…
Discussion
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 Charcot-Marie-Tooth disease, Sander had met only one or two other people with neuromuscular diseases in her city. She was…
Discussion
Four years ago, my family enjoyed a week’s vacation at Bethany Beach, Delaware. There were many great moments that made this trip with my children and grandchildren memorable. There were also a couple of misadventures. We spent a day on Virginia’s Chincoteague Island, which is famous for its population of…
Discussion
The gene therapy Elevidys (delandistrogene moxeparvovec-rokl), approved in the U.S. to treat people ages 4 and older with Duchenne muscular dystrophy (DMD), can be safely administered to boys with DMD as young as 2 years old, new data show. A new analysis, which covered nine boys with DMD…
Discussion
It seems to be a theme in our lives: Lifts and elevators work great — until they don’t. I am a mom to many: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 12; and Callie, 4. Three of my sons, Max, Rowen, and Charlie, have Duchenne…
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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