[…] Susan Aumiller, Powell, Ohio Last year, soon after my son and husband were diagnosed with FSHD, I called the FSH Society and said I’d like to organize a fundraiser. Within […]
Organizing a Walk & Roll ─ if I can do it, so can you!
Webinar: Stance-control braces
[…] type of leg brace made a difference in her life. In speaking with a leading FSHD physical therapist, we realized that stance control braces are not well-known or widely used […]
Art lets me grow
[…] I don’t think any of my work as an artist really focuses on my having FSHD. I do feel, however, that my art and creativity are among the major things […]
Disappointing news from Acceleron
[…] rare diseases, today announced that treatment with ACE-083 in patients with facioscapulohumeral muscular dystrophy ( FSHD) did not achieve functional secondary endpoints in the Phase 2 trial. Although ACE-083 demonstrated […]
How are you treating symptoms now?
[…] April 21st is our community’s platform to testify to the FDA on the impact of FSHD. When the FDA considers whether to approve a new drug, it needs to know […]