Pacific Northwest Friends of FSH Research

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Phone: 425-827-8954

217 19th Place
Kirkland
Washington 98033
USA
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Target demographics: Stimulate & Fund new Facioscapulohumeral Muscular Dystrophy (or FSH) research. FSH is the most common form of Muscular Dystrophy yet, its research has been severely underfunded. With new research we believe a treatment or cure will be possible.

Direct beneficiaries per year: 1-3 researchers

Someone who had 3 hours of volunteer time could: Help write letters

Talk to friends & tell others about this condition.

Ask their favorite restaurants, shops to donate an item or gift certificate for the annual fund raising auction.

Write a letter to their Senators asking for increased NIH funding for FSH research.

Make a donation to Friends of FSH Research.

Mission:

Facioscapulohumeral Dystrophy, or FSH or FSHD, is a degenerative muscular disease for which there is no treatment or cure. Through increased public awareness and research funding, we believe a cure can be found. The specific objectives and purposes of the corporation shall be: 1. To encourage, promote and fund increased scientific and clinical research for Facioscapulohumeral Dystrophy, with the goal of identifying treatment and a cure for the disease. 2. To conduct fundraising efforts and solicit grants and contributions from individuals, private foundations and others, in order to sponsor research to advance the study and understanding of FSH. 3. To disseminate information about FSH and encourage additional public support for FSH research by raising public awareness of the need for more research funding.

Results:

After holding the first “FiSHing for a Cure” gala in 2005, the Friends of FSH Research has provided funding for numerous FSH pilot studies. Many of the pilot projects have gone forward to qualify for greater funding by the MDA or the National Institutes of Health. FSH research is moving forward!

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jazluvr

06/08/10

This is a wonderful organization! Their annual Silent Auction fundraiser raises hundreds of thousands of dollars to support FSH Muscular Dystrophy research. This organization has single handedly supported FSH Research at the University of Washington through it's efforts. Additionally, they have ... more »

pacificnorthwestfriends-fan

06/06/10

This organization has been very effective in its work furthering research into FSH. Because of the determination and motivation of its founders, Pacific Northwest Friends of FSH Research has been highy successful in raising more awareness about this form of muscular dystrophy, as well as raising ... more »

elen

06/04/10

For the past 5 years, I have been a volunteer for the Pacific Northwest Friends of FSH Research organization. I have watched the Colella family work tirelessly throughout the year, promoting the organization's message, organizing the annual Dinner Auction, and collaborating with medical ... more »

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