friends of FSH Research

Funding Research for
FSH Muscular Dystrophy Dots

Over 10 Years of Creating Hope

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 >>

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Over $3 million

funded to date


Attracted to research

Check Out Your Impact >>

"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

Latest News

World FSHD Awareness Day

— June 20, 2016

Seattle Mayor Ed Murray and US Senator Maria Cantwell pay tribute to the first ever World FSHD Awareness Day.

Call for Proposals

— June 16, 2016

We are re-issuing our 2016 general call for research proposals. We are accepting any proposal that support a path…

GiveBIG Results

— May 24, 2016

Over $13K for research.

FSH Summit Report 2016

— May 23, 2016

Report of FSHD Summit held in Portland, Oregon, February 29 to March 1 of 2016.

Potential Biomarkers

— May 14, 2016

What should we use to track the benefits of a treatment in clinical trials for FSHD?


Ask the Expert

Serum Biomarkers

by Sheila Silvas

Sheila had the pleasure of meeting with Daniel G. Miller, Geneticist at Seattle Children’s Hospital, and Associate Professor at the University of Washington. Dr. Miller and colleagues from the University of Rochester, the University of Washington, and Seattle Children’s Hospital recently published a cross sectional study of two independent groups of people with FSHD, and identified serum biomarkers. The landmark study was published in the journal Neuromuscular Disorders.
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