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… Read More »
Time equals lives. The patient’s voice
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… Read More »
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 »