Pacific Northwest Friends Of FSH Research

The mission of the Pacific NW Friends of FSH Research is to encourage and fund Facioscapulohumeral Muscular Dystrophy research (or FSH) in order to find a cure or treatment for this progressively disabling condition.

Description:
FSH research has been neglected though today it is considered the most common form of Muscular Dystrophy. FSH affects more than 25,000 people of all ages and both sexes in the United States. Pacific Northwest Friends of FSH Research, based in Kirkland Washington, is focused on raising money for FSH research and giving hope to those living with this disabling condition. An Annual Fundraising auction is our primary fund raising activity.

Our 6th "FiSHing for a Cure" auction will be held on January 30, 2010 at the Bellevue Hyatt. Many volunteers are needed in order to make this event a success. The Pacific NW Friends of FSH Research is a volunteer based organization which consists of a volunteer board of directors, a scientific advisory board and volunteers from the community.

History:
Our organization is a grass roots non-profit which was founded in June 2004. We began after, Brian Colella, was diagnosed with Facioscapulohumeral Dystrophy, when he was 16 years old. Brian was then a student at the International Community School in Kirkland Washington. He shared his story with the school and the wider Seattle community in order to help increase the public awareness of FSH.

Since FSH research had been neglected by existing agencies we felt it necessary to form our organization. Our first gala fundraiser was in January 2005. Pacific Northwest Friends of FSH Research works to raise money for FSH research, We hope that this research will help find a cure or therapy for FSH.

Contact people:

Terry Colella, President, (phone), (email) Valerie Enger, Vice-President, (phone), (email) Sandy Eacker, Secretary, (phone), (email)

Office fax number: (425) 576-9245

Address:

217 19th place Kirkland, WA 98033 (See a map)

Web Site: http://www.fshfriends.org

Directions:

Volunteer activity takes place throughout our community.

Last updated on January 26, 2010