A Day of Impact in Washington, D.C. On May 8th, the FSHD Society held its first-ever Day on Capitol Hill in Washington, D.C. This milestone in our advocacy efforts brought… Read More »
Advocating for Change on Capitol Hill
Is MRI the “holy grail” for FSHD clinical trials?
The MOVE+ study aims to find out. Participants needed! by June Kinoshita, FSHD Society Imagine that you are in an FSHD clinical trial a few years in the future. On… Read More »
FSHD Representation in Film Fest Favorite ‘Good Bad Things’
Good Bad Things breaks barriers and earns accolades by Erin Saxon, FSHD Society In August, we shared exciting news about Good Bad Things, a film that promised to challenge perceptions… Read More »
Honoring Rare Disease Day: The Power of Collaboration
Fulcrum and the FSHD Society Reflect on Partnership at Advocacy Event On February 28th, Fulcrum Therapeutics hosted a Rare Disease Day Advocacy Event at their headquarters in Cambridge, MA. This… Read More »
Every person’s effort takes us closer to the tipping point
Stories from our 2024 Volunteer Leadership Summit In early February, 75 of our Volunteer Leaders from across the US and Canada met in-person at the Chicago Airport Hilton or virtually… Read More »