#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. This year, it falls onDecember 1, and we are marking the day by holding… Read More »
GivingTuesday Radiothon is December 1
Time equals lives. The parent’s voice
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… 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… 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 »
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 »