Last week was a busy one for me. In addition to my normal activities, I took field trips on Tuesday and Thursday, looking for solutions to some of my recent struggles related to facioscapulohumeral muscular dystrophy (FSHD) and other health issues. I’m really struggling to get around our…
Discussion
A new collaboration aims to improve the design of clinical trials testing potential treatments for facioscapulohumeral muscular dystrophy (FSHD). The FSHD Society, a patient-driven advocacy organization, is teaming with two other groups — Solve FSHD, a venture philanthropic organization focused on speeding the development of new FSHD treatments,…
Discussion
I have always been an open book about my life. I am a writer, caregiver, and mother living in the Midwest with my family. My husband and I have seven children: Lexi, 24; Max, 20; Chance, 18; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie…
Discussion
The U.S. Food and Drug Administration (FDA) has given Mesoblast the go-ahead to launch a clinical trial testing its cell therapy remestemcel-L-rknd in children with Duchenne muscular dystrophy (DMD). The trial aims to enroll 76 kids with DMD ages 5-9 who are receiving standard-of-care therapies. Participants will…
Discussion
Last Saturday, I attended “Les Misérables: The Arena Spectacular” with my girlfriend at Marina Bay Sands in Singapore. This landmark resort includes a luxury hotel, a shopping complex, and a performing arts theater that hosts international productions. A musical based on the novel by Victor Hugo, “Les Misérables“…
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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