friends of FSH Research


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 $3.6 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

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

Upcoming Events

Keep Calm - It's Raffle Time!
— January 13th, 2018

Pre-Auction Table Captain/Sponsor Raffle

Wellstone Research Update
— January 27th, 2018

A discussion on recent research advances at the Hyatt prior to the Annual Auction.

Latest News

MRI change metrics of facioscapulohumeral muscular dystrophy: STIR and T1

— December 16, 2017

Follow-on publication for previously funded grant.

Progress Report: Defining the role of post-translational modification on FSHD protein DUX4

— December 15, 2017

Jocelyn Eidahl, Post-Doctoral Scientist at Nationwide Children’s Hospital provides a progress update.

Progress Report: Histochemical and morphometric analysis of FSHD biceps

— December 14, 2017

Final progress report from Dr. Wagner.

FSHD Research Funding Overview 2016

— November 21, 2017

Reporting on worldwide funding of FSHD research.

Chronic Pain in FSHD

— November 20, 2017

Chronic Pain Has a Strong Impact on Quality of Life in FSHD.


Ask the Expert

Therapy Q&A

by Amanda Rickard

Interview of Dr. Joel Chamberlain regarding her lab's work on therapy development.
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Champion Spotlight

George & Lynn

by Terry Colella

George & Lynn's commitment to Friends of FSH Research is a natural fit due to their common goal of basic research.
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