…when I was first diagnosed with FSHD (infantile onset) by Archer Sverdrup, St. Louis, Missouri Progression is unpredictable. Sometimes you may go a year with only minor progression. Sometimes every… Read More »
Ten things I wish someone had told me…
Updated medic alert card
We have released a new version of our Medic Alert Card, with the gracious assistance of Ranae Beeker, RN, Helen Cave, and Dr. Joshura Benditt, a pulmonologist at the University… Read More »
Meet del-brax, Avidity’s FSHD therapeutic candidate
Results presented by Avidity of interim data from its Phase 1/2 clinical trial in FSHD were all the buzz at this year’s International Research Congress and FSHD Connect conference…. Read More »
Advocating for Change on Capitol Hill
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 »
Avidity shares interim data from its FORTITUDE trial
“Unprecedented” and “consistent” reductions in DUX4 activity along with improvements in strength and function by June Kinoshita, FSHD Society Avidity Biosciences, Inc., a San Diego-based biopharmaceutical company, announced this Wednesday,… Read More »