Saturday, November 21, 2009

News from Pacific Northwest Friends of FSH Research - terry.colella@gmail.com

News from Pacific Northwest Friends of FSH Research (click to see the complete November newsletter)

It is hard to believe but we are rapidly approaching our 6th "FiSHing for a Cure" gala!

When we began Friends of FSH Research in 2004, it was out of a sense of determination mixed with desperation. How could my son, previously a picture of health, have a condition that would impact his life and eliminate many of his opportunities? As a parent and a nurse, being told that there was absolutely nothing I could do to impact his condition was unbearable and unacceptable.


So taking our love for Brian and a trust in our community we embarked on a new journey of fundraising for Facioscapulohumeral Muscular Dystrophy (or FSH) research. We owe much to all of those who have joined with our family on this mission - the progress we have made is due to their generous support.
Our work must continue. We have new FSH researchers launched and have stimulated interest in this long neglected field. The research is moving forward, our knowledge is building and collaborations between laboratories is on-going. Funds raised on January 30th will help us push this work forward - toward a much needed treatment.

My warmest thanks to you all,
Terry

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