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 $3.5 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

Kendra Gives Back Party
— December 7th, 2017

Enjoy sips, sweets and making your own custom jewelry at the Color Bar. 20% of sales benefit FSHD research.

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

Pre-Auction Table Captain/Sponsor Raffle

Latest News

Progress Report: Xenograft Mouse Model

— November 15, 2017

Dr. Bloch provides a brief update of his progress on a xenograft mouse model.

Scott Harper at Science Week

— November 8, 2017

Scott Q. Harper, PhD presents emerging molecular therapies for FSHD at FSHD Global event.

Emerging Molecular Therapies for FSHD

— October 26, 2017

Scott Q Harper, PhD reviews work at his lab at Nationwide Children's Hospital.

Layman's Description of FSHD

— October 26, 2017

Leo H Wang, MD PhD provides a layman's description of the clinical features and molecular biology of FSHD.

Tips for Air Travel with a Power Wheelchair

— September 26, 2017

Howard Chabner addresses issues of air travel with a power wheelchair.


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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