[…] fight back against FSH muscular dystrophy. Most of my friends and family know I have FSHD. This isn’t a new diagnosis, and living fully with this disease has kept me […]
Gimpy girl goes birding
Why I donated tissue
[…] in Baltimore, Maryland. During that surgery I had the privilege to donate muscle tissue for FSHD research. The donation itself was relatively simple. The paperwork prior to the surgery was […]
2017 Festive Evening Stay-at-Home Campaign
[…] Committee will miss seeing you in person this year. Why we do what we do. FSHD can rob you of your ability to smile. Weaken your legs so you can’t […]
A personal mission to advance research
[…] management led her to roles overseeing clinical studies and supporting collaborative research efforts. After Justin’s FSHD diagnosis, Amanda sought out the FSHD Society and soon became a chapter leader for […]
Search for Chief Executive Officer
[…] to serve as a source of information and support for all patients and families with FSHD; to act as a driving force in the development of research directed towards treatment […]