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Friends of FSH Research is a Seattle-based not-for-profit organization devoted to accelerating research towards a treatment or cure for FSH muscular dystrophy. The organization has been funded predominantly by a strong community of supporters through the annual Fishing for a Cure auction and gala that has been held for the last decade in Bellevue, WA. Since inception, founders Terry and Rick Colella have worked with a board of volunteers to guide the organization's efforts.
As the need for funding for scientific research has grown, Friends has laid out a growth plan that includes hiring professional development staff in order to expand the organization's capacity.
The position of Scientific Development Director will be staffed by Dr. Gregory Block. Dr. Block has over ten years' experience in academic research, including five years as a fellow at the University of Washington, where he was the first to describe a phenotype in FSHD muscle cells along with his colleagues in Daniel Miller's lab. Fascinated by the role that nonprofit organizations play in the success of medical research, Dr. Block enrolled in the University of Washington's nonprofit management program and joined Friends in July 2014.
Dr. Block's position straddles science and fundraising. Working with our world-class scientific advisory board, he has established a funding roadmap to focus our efforts and maximize impact for the community. He has devised a strategy to increase the rate at which grants are awarded, and set up an infrastructure for open and transparent reporting of research to donors and other researchers.
Dr. Block believes that a nonprofit for medical research is not only responsible for "onboarding" existing and potential donors, but also scientists and scientific advisory board members. "The more clear it is for everyone to interpret what we do and how we do it, the more creative projects will be proposed for funding," Dr. Block explains. "Simply put, the more conversations we can have with people about the good we do at the organization, the more volunteers, donors, and scientists we will attract."
Dr. Block will also serve as a central resource for the FSHD community. We believe that one of the most fundamentally important things to our success is to listen to people suffering from FSHD and keep our finger on the pulse of what's happening in the community and in research.