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 $3.1 million

funded to date


Attracted to research

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"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

Acceleron to Webcast Overview of ACE-083 Phase 2 Trial

— October 27, 2016

Webcast to be held Oct 28, 2016 at 10:00 a.m. EDT with Dr. Statland. Archive available approximately 2 hours…

Grant Awarded to Develop Outcome Measure

— October 26, 2016

A proposal to study the histopathological features of muscle in a large biobank from FSHD patients and their first…

Grant Awarded to Explore Innate Immunity

— October 25, 2016

Development of an in vitro model of FSHD innate immunity.

aTyr Pharma ongoing Phase 1b/2 Clinical Trials

— October 6, 2016

aTyr Pharma, a company engaged in the discovery and development of therapeutics to address severe rare diseases, is…

Commonality of Pain in DM & FSHD

— August 26, 2016

258 members of the URMC Registry completed a survey last year. Results indicate that 79% of FSHD patients and 68%…


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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