by Julie When you are a child, you feel like you have all the time in the world. When you become a parent, you realize this isn’t true. Your own children grow up way too fast. And when your child has FSH muscular dystrophy, this is not only poignant, but heartbreaking, as Julie testified at… Read More »
Time equals lives. The parent’s voice
FSHD Society releases Voice of the Patient Report
Landmark report captures compelling testimony by patients and family members about the severity of disease symptoms and urgent need for treatment LEXINGTON, MASS. (PRWEB) NOVEMBER 12, 2020 The FSHD Society has released its Voice of the Patient Report, a landmark publication based on its June 29, 2020, externally led patient-focused drug development (EL-PFDD) meeting. During the meeting,… Read More »
The remarkable origins of FSHD research in America
by Allison Calder, Salt Lake City, Utah Did you know the first grant ever paid out by the United States National Institutes of Health (NIH) was awarded to study FSHD? Maybe you are as shocked as I was when I first heard this while sitting in a family conference at the University of Utah a… Read More »
Time equals lives. The patient’s voice
FSH muscular dystrophy is described as a “slowly progressing” condition, and for many affected individuals, this is blessedly true. But for a significant number, the symptoms can worsen suddenly, sometimes overnight. Whether one’s FSHD is slow or fast moving, the losses of strength and function tally up year after year. Time is not your friend…. Read More »
Have a bigger impact than ever
In this year of unprecedented upheaval and uncertainty, you may wonder if you can continue to support your favorite cause (the FSHD Society!) with your yearly gift. Instead, consider becoming a Torch Bearer – by joining our newly named monthly giving program! By making a small monthly gift, in an amount that you’re comfortable donating… Read More »