Donor Spotlight
Determined Family Shines Light on Little-known Disease
Richard Frock, a graduate student in two of the UW labs now working on FSHD, shows Brian Colella a dish of muscle cells growing in culture.
Pacific Northwest Friends of FSH Research was born of hard work, vision, and a mother’s unwavering determination.
In 2003, Brian Colella, an active 16-year-old, was diagnosed with fascioscapulohumeral muscular dystrophy. FSHD, also known as Landouzy-Dejerine, is a type of muscular dystrophy that initially affects muscles of the face, shoulders, and upper arms. Eventually the degeneration of muscle tissue can spread to the back, legs, and other areas as well.
After the shock of his diagnosis, Brian’s mom, Terry Colella, got to work. Terry discovered that although little was known about FSHD, research into the disease was woefully underfunded, so there was no cure for Brian — not even any treatments. Given that reality, Terry and her family decided to raise money on their own and launched Pacific Northwest Friends of FSH Research.
Brian Colella suffers from a little-known form of muscular dystrophy, FSHD, that first affects the face and shoulders but can spread to other areas. Brian’s family raises money for FSHD research through an annual auction. At left, Brian is ready to meet the guests in a quiet moment before auction No. 2 in 2006.
With funds raised through an annual auction, Terry’s group has supported a number of FSHD research projects. As the first beneficiary of the inaugural auction in 2005, the University of Washington has a special relationship with Pacific Northwest Friends of FSH Research. Where there had never been an FSHD study conducted at the University, there are now three pilot projects and nine scientists involved in this work. “Our small effort demonstrates that you can attract researchers to study a new field by providing stimulus grants,” says Terry.
Brian’s mother, Terry Colella, has shown how much one family can do. Thanks to the stimulus grants awarded by her foundation, the UW now boasts three pilot projects on FSHD where there used to be none. Terry is shown above with her husband, Rick, during the foundation’s third and most recent fundraising auction
Terry’s determination remains stronger than ever. And with the commitment of her family and community, the “small effort” of Pacific Northwest Friends of FSH Research is no longer so small. The 2007 event raised more than $200,000. The Fourth Annual "FiSHing for a Cure" auction is scheduled for Jan. 26, 2008.
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