Accelerating Research Since 2004

The mission of Friends of FSH Research is to accelerate the discoveries that will lead to treatments or cures for FSHD. To achieve our goal, we actively manage a portfolio of research that supports a pipeline for drug discovery. Our board, staff, volunteers, and world-class scientists are fully committed to transparent, reproducible, and transformative science that will inspire hope for people with FSHD. Learn more >>

Upcoming Events
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Fueling the Next DISCOvery!
Feb 3, 2024 to Feb 3, 2024
Annual Auction at the Bellevue Hyatt Regency - Evergreen Ballroom
Latest News
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Update: Motor Outcomes to Validate Evaluations in FSHD
Oct 10, 2023
Latest update from the MOVE grant.
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Update: An in-silico approach to understanding DUX4 expression
Sep 19, 2023
We have developed a computational cellular model of FSHD, based on a mechanism where expression of DUX4 (currently the main target for FSHD therapy) leads to muscle cell death.
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Progress Update: Consequence of human satellite II repeat expression in FSHD
Jul 5, 2023
Initial progress update.
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Update: Determining in vitro and in vivo efficacy of novel DUX4 inhibitors
Apr 6, 2023
Final update by Dr. Ozes of Altay Therapeutics.
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Update: Epigenetic Analysis and FSHD Research Testing
Mar 23, 2023
FlexFund grant on support for continued development of low-cost FSHD diagnostic test.
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Update: Motor Outcomes to Validate Evaluations in FSHD
Feb 5, 2023
This large study will be a big achievement in the FSHD community, a reality that has been made possible by the support from Friends of FSH Research.

Mini-Auction to whet your appetite
AND
A Raffle for 2 Auction Tickets + Hotel Stay

 
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Over $7.7 million

funded to date,

attracting millions more

to FSHD research

 

Friends is proud to help support free FSHD testing for individuals at
myfshd.org

 

Current FSHD Studies Worldwide

See listings at:
ClinicalTrials.gov
Please consider participating.
(New Beta Interface)

 

"Hopefully one day FSHD will be stopped in its tracks. I know that there is still a long road ahead, with many milestones to pass but the journey isn’t quite so scary knowing that I am not alone and that there are those willing to keep pushing ahead, guiding the way until we find the key to unlock that final door."

- T. Pilato

 

Our vision: One day the diagnosis of FSH Muscular Dystrophy will be followed by "...there is a treatment."