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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$235K Raised At Auction

See photos from the 2016 auction

Over $3 million

funded to date


Attracted to research

Check Out Our 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

GiveBIG coming May 3!

— May 3rd, 2016

Put a phone reminder and mark your calendars for the Seattle GiveBIG where every donation is stretched further by matching dollars.

Spring Green Art Fest

— May 6th, 2016

Treat yourself and your garden friends to a day of garden delights at the lovely Lynnwood Convention Center. Friday May 6th and Saturday May 7th. Enjoy our free garden seminars with renowned speakers. Free entry to shop from over 40 unique, handmade, nature inspired artists and local specialty plant nurseries. Sponsored by Friends of FSH Research.

Latest News

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.

aTyr announces initial results in FSHD trial

— April 8, 2016

aTyr pharma has encouraging news regarding a possible treatment for FSHD using a novel protein-based biologic drug.

Participate in FSHD research: UW/Children's research study

— February 23, 2016

FSHD clinical research project needs patients to complete study

Education grant to Robert Kao

— February 15, 2016

Grant for curriculum development and online resources for education by Robert Kao

Research Funding: Joel Chamberlain looks for DUX4 in humans

— November 4, 2015

Dr. Chamberlain will be investigating the how DUX4 expression in humans relates to disease pathology.