Welcome! While no one wishes for a diagnosis of FSHD, now that you are here, you are about to join an awesome community. We are re-writing the future by taking […]
Newcomer’s Toolkit
Fundraise Your Way
Fundraise for FSHD, Your Way! Each year, volunteers from across the country raise thousands of dollars to fund research into treatments and a cure for FSHD. Join this passionate community […]
Walk Pioneers Lead the Way!
[…] FSH Society will host its new signature fundraising event, the Walk & Roll to Cure FSHD in five communities from coast to coast. These Volunteer Leaders are paving the way for their […]
Q & A with Dr. Rabi Tawil, Part 1
[…] University of Rochester, New York, and lead author of the first evidence-based care guideline for FSHD, a project the FSH Society supported through consultations and advocacy. Summaries of the guideline […]
$3.4 million to speed us along our journey (Part 1)
[…] funded will help us get more and better treatments to our community by June Kinoshita, FSHD Society Many of you have heard us describe the FSHD Society as a “research-focused […]