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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 facioscapulohumeral 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. Terry and her husband, Rick, decided to raise money on their own and launched Pacific Northwest Friends of FSH Research.
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, and as a beneficiary in 2006 and 2007, 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. In a visit to UW Medicine, 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.
“Our small effort demonstrates that you can attract researchers to study a new field by providing stimulus grants,” says Terry Colella. |