Thursday, January 15, 2009

Celebrate New FSHD Research

Celebrating Hope through funding New FSH Research

I was diagnosed with FSHD shortly after my 20th birthday. …. I was unable to whistle, drink through a straw and I slept with my eyes partially open….. I have come to realize the devastating affect muscular dystrophy has had on my life.”

Facioscapulohumeral Muscular Dystrophy or FSH affects more than 25,000 individuals in the United States

“To be categorized as disabled is something that has always frightened me not because of the term, but because of the classification it can entail. As if you are a little bit less than what you could be…” “My mother loved horses, but this disease restricted her from doing many of the things she loved, especially as she reached adolescence….”

FSH requires giving up dreams, settling for a path dictated by the disability.

I think because of the nature of this form of muscular dystrophy it doesn't always get the attention it deserves. It's physical and emotional effects rival those of other diseases and dystrophy's, and yet it is not researched as other disorders are.

FSH research lags far behind other similarly life altering conditions.

FSH is “unpredictable in nature; there is nothing you can really do to prevent losses.... the loss you experience is not just in your facio, scapular, and humero areas, it affects the rest of the body as well.”

Friends of FSH Research is dedicated to funding FSH research.

On Saturday February 7th the 5th annual “FiSHing for a Cure” dinner & gala will take place – make your reservations today! Join with us as we impact lives affected by FSH and those diagnosed with FSH tomorrow.

Contact Friends of FSH Research at or call 425-827-8954 to learn more about FSH or make a donation. To learn more about the very special gala on February 7th and the many great auction items go to our website,

Make a Difference!



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