About Us: Our Organization

Friends of FSH Research, an independent, 501(c)(3) non-profit tax-exempt organization, was founded by the family and friends of Brian Colella. Brian was diagnosed with FacioScapuloHumeral Dystrophy (FSHD) in 2004. Our organization was formed to raise money for new and current research toward a cure or treatment for FSHD.

We are eager to help those affected by this disabling condition by funding scientists who research FSHD, and we feel lucky to have established a partnership with the Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center at the University of Washington.

Funding for FSHD research from organizations that focus on Muscular Dystrophy and from the National Institutes of Health has been woefully inadequate. Although millions of dollars are raised annually for Duchenne Muscular Dystrophy (DMD) and Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig's Disease), little attention has been paid to FSHD.

Friends of FSH Research (also known as Pacific Northwest Friends of FSH Research) depends upon private donations and grants; we need your donations and your support. Please join us to find a cure for FSHD. Visit our Contribute page to find out how to help.

Your support has helped so much...
Friends of FSH Research-supported pilot studies provided the preliminary data that was critical for the Program Project Grant application, and these pilot studies have resulted in additional NIH awards to Dr. Stephen Tapscott's lab in Seattle and Dr. Michael Kyba's in Minneapolis, as well as grants from the Muscular Dystrophy Association to Dr. Dan Miller and Dr. Joel Chamberlain in Seattle. The total investment by the Friends of FSH Research has been approximately $800,000 in pilot funds since 2005; the return on that investment is about $10 Million for FSH research from the NIH and the MDA combined!
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