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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
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 »
First patient enrolls in Fulcrum’s Phase 3 clinical trial
Losmapimod has the potential to be the first drug to treat FSHD The much-anticipated Phase 3 clinical trial of losmapimod has formally begun with the dosing of the first volunteer,… Read More »