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 educate the FDA on how FSHD has impacted their lives. More than 600 people responded to our surveys and provided statements which have been compiled… Read More »
We Heard Your Voice
Compression belts help me look buff again
by Rick Whitehead, Knoxville, Tennessee I’d like to share one of the most valuable tips I’ve had for dealing with “FSHD belly.” My abdominal core muscles had become like weak balloons, displacing internal organs. It’s not comfortable, not attractive and sometimes painful. I was in a clinical trial in Rochester, New York, and had a… Read More »
GivingTuesday Radiothon is December 1
#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 our second annual GivingTuesday Radiothon to raise funds and worldwide awareness of Facioscapulohumeral muscular dystrophy (FSHD). Streamed over Facebook Live, our intrepid host Tim Hollenback… Read More »
Get a MOVE on!
by June Kinoshita, FSHD Society When doctors diagnose individuals with a progressive condition like FSH muscular dystrophy (FSHD), they’re often asked, What does the future look like? Will I need to use an orthotic brace? How long do I have before I need to use a walker or a wheelchair? What about respiratory support? While… Read More »
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 children grow up way too fast. And when your child has FSH muscular dystrophy, this is not only poignant, but heartbreaking, as Julie testified at… Read More »
FSHD Society releases Voice of the Patient Report
Landmark report captures compelling testimony by patients and family members about the severity of disease symptoms and urgent need for treatment LEXINGTON, MASS. (PRWEB) NOVEMBER 12, 2020 The FSHD Society has released its Voice of the Patient Report, a landmark publication based on its June 29, 2020, externally led patient-focused drug development (EL-PFDD) meeting. During the meeting,… Read More »