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 »
We Heard Your Voice
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 »
The community’s role in accelerating therapies
In our webinar on “Accelerating Therapy Development: The Patient Community Role,” Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics, discusses the many ways in which your efforts,… Read More »