I’ve been forced to make lifestyle changes continuously because of the progression of my facioscapulohumeral muscular dystrophy (FSHD) and other health issues. But I’ve regained some independence in the past few weeks after losing some capabilities over the past six months. I have a new sit-to-stand…
Discussion
CureDuchenne, a U.S.-based nonprofit that funds research into new treatments for Duchenne muscular dystrophy (DMD), has launched a national public service announcement campaign to highlight the urgency behind research for people with DMD. The new advocacy campaign, dubbed A Cure Can’t Wait, highlights…
Discussion
I wrote last week that I have been overwhelmed this summer by the demands of being a mom and caregiver. I have seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie live with…
Discussion
Two major steps are now complete in an early clinical trial testing a one-time epigenetic therapy — a treatment designed to turn on or off a specific gene without changing the underlying DNA — for facioscapulohumeral muscular dystrophy (FSHD), a genetic disease that characteristically affects the muscles of the…
Discussion
Last month, the Purple Parade featured my story on its website. Reading my profile prompted me to reflect on why I continue speaking up about living with Duchenne muscular dystrophy (DMD) and what I hope these conversations might achieve. The Purple Parade is Singapore’s largest disability-inclusion movement,…
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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