Tuesday, February 24, 2009

1 Million Dollars for FSH Research

In hopes of gaining public attention for FSH Muscular Dystrophy and our mission to increase funding for FSH research, I wrote the following press release.

Since we don't have a publicity department, or one for marketing, I decided to write something that might appear somewhat official and send it off to various news agencies.
My fingers are always crossed that someone, somewhere, will read about FSH, our organization, the inadequate funding for FSH, etc. and be curious to find out why.  I would love an investigative reporter to one day to wonder why this condition that impacts the lives of so many, receives so little research funding.   Perhaps, if the history of FSH funding was researched, pressure might then be brought upon publicly funded organizations demanding that they distribute research funds equitably.

5th Annual FiSHing for a Cure Auction
One Million Dollars for FSH Muscular Dystrophy Research

Bellevue, Washington (February 7, 2009) – With the support of sponsors and guests, the 5th annual “Fishing for a Cure” auction cleared more than $200,000 and enabled this home based, grass roots organization to claim a million dollars raised for FSH Muscular Dystrophy research.

Pacific Northwest Friends of FSH Research, based in Kirkland, Washington is extremely grateful to their many supporters over the past 5 years who made this million dollar landmark possible. Guests, sponsors, research scientists and individuals affected by Facioscapulohumeral Muscular Dystrophy, or FSH, gathered on February 7th to enjoy this annual gala event at the Bellevue Hyatt where 100% of the funds raised during the event will be used to fund much needed FSH research.

Since the first “FiSHing for a Cure” auction, held in 2005, the Pacific Northwest Friends of FSH Research has awarded 6 research grants and has made an impact upon the FSH research community. Prior to the first grant to Drs Brian Kennedy and Steven Hauschka at the University of Washington in 2005, no FSH research studies had been conducted in Seattle. “Thanks to the extreme generosity of our community, we have been able to attract scientists to the field of FSH research and fund pilot projects which might shed new light upon this disorder,” said the organization’s president and founder, Terry Colella. Today, a collaborative FSH research network has been developed between the scientists in Seattle based at the University of Washington, Fred Hutchinson Research Center and Children’s Hospital and those at the Universities of Rochester, Minnesota and the Netherlands.

Facioscapulohumeral Muscular Dystrophy is a progressive condition for which there is no treatment or cure. It is the second most common form of Muscular Dystrophy in the adult population and the third most common hereditary disease seen in the skeletal muscle. It is estimated that more than 25,000 people in the United States have FSH, although it is genetically caused and thus, seen past down through generations, 25% of all cases are “sporadic” or caused by a random genetic error. FSH is characterized by a progressive muscle weakness and loss of skeletal muscles beginning in the face (facio), upper back (scapulo) & upper arms (humeral) regions, thus the origin of the name.

Pacific Northwest Friends of FSH Research, also known as Friends of FSH Research, was founded by the Colella family in Kirkland, Washington following the FSH diagnosis of their child in 2003. Conducted from their home, Friends of FSH Research has minimized administrative costs thus, increasing the funds available to achieve their mission of stimulating & funding FSH research. Friends of FSH Research is a 501(c) (3) non-profit organization thus, donations may have tax benefits as dictated by the IRS.

For more information on FSH Muscular Dystrophy or the Friends of FSH Research please visit www.fshfriends.org, or contact Terry Colella at 425.827.8954 or fishauction@fshfriends.org

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