Actors Max Adler and Danny Kurtzman team up for Good Bad Things Long-time FSHD Society champion, actor Max Adler, shared some exciting news with us that he has joined the… Read More »
New movie will feature man with FSHD
True Cost of FSHD
Part of our battle plan to ensure patients will have access to treatments by June Kinoshita, FSHD Society The FSHD Society is undertaking a major study of the full socioeconomic… Read More »
Putting breathing issues on the front burner
Dan Perez’s fierce advocacy will advance knowledge and extend the lives of people with FSHD Breathing complications in FSHD can be deadly, but with the lion’s share of research focused… Read More »
My Superpower – Why I volunteer for clinical trials
My FSHD means I can be someone who changes the course of this disease for generations to come by Colette Wheeler, Los Angeles This is an edited transcript of a… Read More »
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… Read More »