by Kristin Zwickau New England Chapter Director Having a child diagnosed with a complex, serious disease that causes disabilities is a very hard reality for parents to deal with, let alone for the child who faces it day in and day out. Our daughter, who was diagnosed at the age of 6, is mobile, but… Read More »
FSHD goes to school
It’s Time to Act: Take Our Muscle Biopsy Survey
Over the years, researchers have relied on the generosity and courage of our patient community who volunteer for important clinical studies in FSHD. Many of you have given your valuable time, undergone complicated muscle strength test, filled out endless questionnaires and even volunteered to give muscle biopsies so scientists can better understand FSHD disease progression…. Read More »
It’s Time To Act: Take our Genetic Test Survey
We are entering a time of great hope for individuals with FSH muscular dystrophy, as new treatment approaches target the root genetic cause of the disease. But this means that people will need a genetic test for FSHD in order to participate in clinical trials and to be prescribed these treatments (once they get approved… Read More »
ABC’s of Clinical Trials for FSHD [VIDEO]
We’re pleased to share with you this video recording from the FSHD Society’s webinar, “ABC’s of Clinical Trials,” given on December 7, 2019. Our webinar speaker is Rabi Tawil MD, a foremost authority on FSH muscular dystrophy. Dr. Tawil is director of the Fields Center for FSHD Research at the University of Rochester in… Read More »
The Future is Now for the Voice of the Patient
At the end of the day, if there were a drug that stopped FSHD in its tracks, would you want it, even if it did not restore what you have already lost? What if a drug made you stronger temporarily, even if it did not stop the disease? Only those who are directly affected by… Read More »