Posted by Gregory J Block MSc PhD on Sep 16, 2014
Ten years ago, Pacific Northwest Friends of FSH Research was established to independently fund research for FSH muscular dystrophy. At the time, little was known about the disease, and much of the pioneering research on the genetics of FSHD was being done on the East Coast and in Europe. By approaching researchers at the University of Washington, Seattle Children's Hospital, and the Fred Hutchinson Cancer Research Center, we were able to attract a new researchers to the cause, and the impact has been profound.
Friends' mission at that time was to stimulate research towards a treatment or cure for FSHD in the Northwest. Stimulate is an appropriate word to describe what we were doing at the time, because researchers require seed funding to establish meaningful research programs. Since 2004, we've provided grants totaling over $2.5 million, those grants in turn have attracted over $15 million in federal funding to FSHD research programs.
Seattle is now one of the main hubs of FSHD research and researchers we've worked with have contributed fundamental building blocks to science's understanding of FSHD. For example, because of projects we have funded, there is now a consensus on what causes FSHD and we've identified new targets for further research. We also co-funded the very first drug discovery effort for FSHD and have continued to invest in approaches that will bring treatments to patients faster.
Now, 10 years in, we are making some striking changes to accelerate research towards a cure. We have simplified our name to Friends of FSH Research, and we are no longer using the word "facioscapulohumeral." Most significantly, we've hired our first ever staff member to help us build the organization from the science up.
By focusing our grant efforts towards transparent and reproducible research, we are able to leverage our small size to fund the most innovative projects in order to foster long-term growth of FSHD research programs.
If you're interested in learning more about how we plan to reach our goals, our 2014/15 Case Statement clearly articulates the organization's mission, vision, and values.