Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day. How to get involved The Orange Slice Selfies campaign is our signature social media event to recognize World FSHD Day. Supporters post a photo of themselves to social media using an orange slice… Read More »
World FSHD Day
FSHD Society Radio interview with Scott Harper, PhD
Join radio host Tim Hollenback via Facebook Live on Wednesday, January 8, at 9:00 PM ET | 8:00 PM Central. His guest this month is FSHD research rock star Scott Harper, PhD, a leader in the effort to develop gene therapy. Harper is principal investigator at the Center for Gene Therapy at the Research Institute at… Read More »
FSHD Radio – Meet Meredith Huml
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM ET | 8:00 PM Central. His guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a “disease she had never heard of,” Meredith faced the wrenching loss of her beloved dancing. Her younger… Read More »
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how… Read More »
Daytona Beach Chapter Meeting
We are excited to be holding our first member meeting as a new chapter! This is a friendly, confidential meeting where you can share and learn from one another about local resources, tips and tricks for coping with the physical and psychological challenges, and offer and receive support. There will be finger foods served. There is a nearby restaurant where… Read More »