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 >>

Kristina McMullin speaking at the 2016 auction regarding life with FSHD. Length: 4:31 minutes.

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Over $3 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

Upcoming Events

World FSHD Awareness Day

— June 20th, 2016

The first ever World FSHD Awareness Day.

Latest News

GiveBIG Results

— May 24, 2016

Over $12K for research.

Call for proposals

— May 23, 2016

Friends of FSH Research is seeking proposals for our August grant review cycle. The cycle will be open until July…

FSH Summit Report 2016

— May 23, 2016

Report of FSHD Summit held in Portland, Oregon, February 29 to March 1 of 2016.

Potential Biomarkers

— May 14, 2016

What should we use to track the benefits of a treatment in clinical trials for FSHD?

Grant Awarded to Expand FSHD Patient Registries

— April 29, 2016

The European Neuromuscular Centre (ENMC) has awarded a grant to discuss expanding the core set of data that is…

Friends of FSH Research Summit Q&A

— April 15, 2016

Patient, donor, and board member George Shaw asked key questions about what the Summit was all about.