[…] farther and reach higher than we can when we go it alone. That’s what the FSHD Society is all about! Led by volunteers and supported by FSHD Society staff, the […]
Volunteer
Overcoming separateness
by Haviva Ner-David, Kibbutz Hannaton, Israel Haviva Ner-David at the 2014 FSHD Connect. Photo by Romana Vysatova. WHEN I WAS diagnosed, aside from recommending swimming, the doctor told me and […]
Let’s start a movement!
[…] services I normally use. She even took the time to watch my daughter’s documentary on FSHD, (Lexi Pappas – Growing Up With FSHD) and to visit the FSHD Society website. […]
Changing mindset about assistive technologies
Emma Weatherley, executive director of Australia’s FSHD Global Research Foundation, has a refreshingly positive outlook on assistive devices. Instead of seeing the need to use a brace or wheelchair as […]
Avidity gets orphan drug designation
[…] Biosciences announced this week that it had received FDA Orphan Drug Designation for its experimental FSHD treatment, called AOC 1020. This does NOT mean the drug is now available for […]