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

Video of 2017 auction by DJ Sean Denard

Latest News

Progress in Understanding FSHD Molecular Pathology

— March 11, 2017

Review of a newly published paper from Davide Gabellini's group.

Medical Equipment, Access Solutions and Respiratory Therapy

— February 28, 2017

Howard Chabner updates 2013 memo on recommendations for various types of medical and mobility equipment.

Research Opportunity

— February 9, 2017

The University of Washington is seeking individuals to participate in a research study aimed at identifying…

Meet Our Development Manager

— February 8, 2017

Bonnie DeCaro-Monahan joins Friends of FSH Research.

AccessMap Routing Tool

— February 8, 2017

A tool under development at the UW to provide routing information for someone with limited mobility.


Ask the Expert

Potential use of BET inhibitors for FSHD

by George Shaw

Q&A by Fran Sverdrup, a Research Fellow at Center for World Health and Medicine.
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