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 $3.2 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

Upcoming Events

Coast 2 Coast Pre-Ride Meet & Greet
— May 26th, 2017

Meet Chris Carrino, Frank Carbone, and his team of cyclists at Postdoc Brewing.

Ride Kick-Off Celebration
— May 27th, 2017

Meet all the cyclists to cheer them on as they depart for their long journey.

World FSHD Day Awards Reception
— June 20th, 2017

Join us as we recognize the researchers and their teams.

Wedgwood Art Festival
— July 8th, 2017 to July 9th, 2017

Visit the artists who support our annual auction.

Latest News

Highlights of 2017 MDA Conference

— May 18, 2017

Genea Biocells scientists presented work from four disease modeling projects.

You Gave BIG

— May 11, 2017

Thanks to you, we exceeded our Give BIG goal.

Coast 2 Coast 4 FSHD

— May 1, 2017

4200 miles in 54 days to raise funds for research.

Kirkland couple raises $3.2M for FSHD

— April 17, 2017

Kirkland Reporter article.

Progress Report: Structural studies of DUX4-DNA interaction

— March 24, 2017

Hideki Aihara PhD provides an update on his research into the structure of the Dux4 homeodomains in complex with…


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

Chris Carrino

by Bonnie DeCaro-Monahan

Chris pushes past his time and physical constraints to run a foundation while continuing in his role as announcer for the Brooklyn Nets.
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