Pacific Northwest Friends of FSH Research, a Kirkland non-profit has given to researchers at the University of Washington $50,000 to study Facioscapulohumeral Dystrophy, or FSHD. Members of the organization met with the research team on June 14, 2006 to give them the funds for the first year of their proposed 2-year study. The total gift to the research team will be $100,000.

The study, under the direction of Drs. Daniel Miller M.D. Ph.D. and Stephen J. Tapscott M.D. Ph.D., was selected for funding by the Pacific Northwest Friends of FSH Research’s Scientific Advisory Board and hopes to answer some key questions regarding the FSHD muscle cell. Both Drs. Miller and Tapscott are very experienced researchers. "We are thrilled to have attracted this caliber of researchers to the study of Facioscapulohumeral Dystrophy," said Pacific Northwest Friends of FSH Research’s President Terry Colella.

The Colella family, with the help of many friends, began the Pacific Northwest Friends of FSH Research in 2003 after their son Brian was diagnosed with FSHD. In telling why they pushed forth to form this organization, Terry said that when Brian was diagnosed the doctors just told them to "watch and see" how it would advance. "There were no treatments or suggestions as to how we could help slow or stop its progress. As a parent, learning that your child has a medical problem is very difficult; to learn that there is nothing to be done to help is heartbreaking. Being told just to 'watch and see' is impossible. We had to do something for Brian."

FSHD causes a progressive weakening and loss of skeletal muscles, especially the muscles of the face, shoulders and upper back. As it progresses other skeletal muscles can be affected. FSHD is the second most common adult form of M.D. and the third most common form of Muscular Dystrophy overall. FSHD affects both sexes equally. Some of the problems which face those with FSHD are: being unable to lift themselves out of bed, unable to walk up stairs, unable to lift their arms over their head or close their eyes when sleeping. Some of those with FSHD have respiratory complications due to their inability to clear their lungs with a strong cough. More than 20% of those with FSHD are limited to a wheelchair.

Historically, FSHD has received inadequate research funding by other organizations. It is the mission of the Pacific Northwest Friends of FSH Research to stimulate new research interest and support FSHD research projects. To raise these much needed funds for research, the Pacific Northwest Friends of FSH Research holds an annual "Fishing for a Cure" benefit dinner auction.

The Pacific Northwest Friends of FSH Research is planning their third annual auction which will be held in Bellevue on January 27, 2007. Many volunteers are still needed to insure the continued success of this event and their ability to fund new research projects. Items for the auction, corporate sponsors and cash donations are very much needed. Volunteers are needed to meet with businesses and our community and help us increase the public awareness of FSHD. "The Pacific Northwest Friends of FSH Research is committed to finding a cure for FSHD. Together we will make a difference!!"

If you want to be a part of this grassroots organization or make a donation, please contact Terry Colella at (425) 827-8954 or by e-mail at fiSHauction@juno.com. For additional information about FSHD and the Pacific Northwest Friends of FSH Research please view the website at www.fshfriends.org.