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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 »
Putting breathing issues on the front burner
Team Up to End FSHD through the Walk & Roll
Together, we move toward a cure Ending FSHD will take all of us and the Walk & Roll to Cure FSHD makes it easy for everyone to team up -… 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 »
A long journey but worth it
Face-to-face meetings add an extra layer of feelings and motivation by Ricardo Gerpe, FSHD Spain I had decided to go to Orlando for the FSHD Connect conference although due to… Read More »