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 >>

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Over $3 million

funded to date

$15,000,000

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


Latest News

Commonality of Pain in DM & FSHD

— August 26, 2016

258 members of the URMC Registry completed a survey last year. Results indicate that 79% of FSHD patients and 68%…

ENMC Travel Grant

— August 20, 2016

Small but critical grant awarded two key stakeholders in the push for FSHD trial readiness.

#MyotubeMike4FSHD muscle disease awareness campaign

— July 18, 2016

Your hashtags earn money for Friends of FSH Research organization

Smile Always

— July 14, 2016

When using Amazon.com do you sometimes forget to go to Smile.Amazon.com?

First stem cell model of muscular dystrophy published

— July 14, 2016

Implications for FSHD and therapeutic developments

 
 

Ask the Expert

Serum Biomarkers

by Sheila Silvas

Sheila had the pleasure of meeting with Daniel G. Miller, Geneticist at Seattle Children’s Hospital, and Associate Professor at the University of Washington. Dr. Miller and colleagues from the University of Rochester, the University of Washington, and Seattle Children’s Hospital recently published a cross sectional study of two independent groups of people with FSHD, and identified serum biomarkers. The landmark study was published in the journal Neuromuscular Disorders.
to read more...