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 >>

Diamonds & Denim Gala

We are gearing up for Diamonds & Denim Gala, our January 24, 2026 Auction and Dinner Gala. Keep abreast with updates here.

These boots are made for walkin'...
Latest News
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Update: FSHD Blood Biomarker Development
May 25, 2025
One year update.
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Report: Molecular Markers of FSHD
May 3, 2025
Updates on Aim 1 & 2 during year 2.
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Report: The role of macrophages in Facioscapulohumeral muscular dystrophy
Apr 27, 2025
First year report.
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Report: Mapping Facioscapulohumeral muscular dystrophy through single nuclei RNA sequencing
Apr 10, 2025
Year one report on progress.
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Update: Understanding Global Genetic Diversity in FSHD and Building International Trial Readiness
Mar 19, 2025
Final project report on global genetic diversity.
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Update: FSHD Blood Biomarker Development
Jan 27, 2025
Initial update on grant progress.
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Over $9.8 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.

 

"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."