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 >>

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

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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

FSH invite 2017

Upcoming Events

FSHD Patient Education Day

— January 21st, 2017

Updates and round-table discussion on FSHD on the morning of the January Auction.

Latest News

aTyr Pharma Reports Promising Signals with Resolaris

— December 20, 2016

Press release from aTyr

Neurogenetic Testing: The Good, the Bad and the Ugly

— December 19, 2016

UW Medicine geneticist and professor, Dr. Thomas Bird, demonstrates how genetic testing is utilized in the practice…

ENMC Workshop on FSHD Global Registries

— December 1, 2016

Lay report for the ENMC Workshop.

FSHD Animal Model Progress

— November 28, 2016

SAB member Bruce Wentworth provides a brief update from the FSH Society Patient Connect Conference.

Progress Report: DUX4 activity in hESC-derived muscle

— November 14, 2016

Final report of grant to Dr. Uli Schmidt of Genea Biocells.


Ask the Expert

FSHD Respiratory Issues

by Amanda Rickard

Interview with Dr. Nicholas S. Hill, Chief of the Pulmonary, Critical Care, and Sleep Division at Tufts University School of Medicine.
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