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… Read More »
Have a bigger impact than ever
We Heard Your Voice
by June Kinoshita, FSHD Society On June 29, 2020, the FSHD Society convened its landmark Voice of the Patient Forum. Patients and family members testified by livestream and email to… Read More »
Feeling the urgency of NOW. Time = Lives
Last year, the FSHD Society launched an aggressive initiative to accelerate therapeutic development in FSHD. Because of our donors’ commitment and investment, we hosted the first Industry Collaborative Workshop for… Read More »
Walking in water – mindful movement through difficult times
by Jennifer Egert, PhD, New York City I had a picture in my head: swimming in a pond at the base of a waterfall. Six months after the arrival of… Read More »
Why I did a 180 on participating in clinical trials
By Elizabeth W, Los Angeles, California There is a lot of fear when you live with a progressive disease like FSH muscular dystrophy. Your mind is constantly circling a sea… Read More »