Friends of FSH Research
April 2010
"FiSHing for a Cure"
In This Issue
$6.3 Million Dollar Grant for FSH Research
Tapscott's Corner
Save the Date!
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Circle of Friends


We want to express our deepest thanks to each and every one of you for your support!!   Since we began working to impact the lives of those affected by Facioscapulohumeral Muscular Dystrophy, or FSH, we have received the help from so many.  You are the reason that the work in FSH research is moving forward. 

As you may know, when we founded Friends of FSH Research in 2004 and began funding FSH research our goal (other than to find a cure or treatment) was to fund pilot projects.  Our hope was that by funding pilot studies, we could give researchers the opportunity to develop the data and information that would help them apply for and receive larger grants.  

Now, with this NIH grant described below, the researchers you helped to fund will be able to work full time on FSH. Without you, this would not have been possible. 


Friends of FSH Research
  the Colella Family

$6.3 Million Dollar Grant for FSH Research

Friends of FSH Research, based in Kirkland, WA. is thrilled to announce that a $6.3 million, 5-year National Institutes of Health (N.I.H.) grant for FSH research has been awarded to the Seattle-based research consortium headed by Dr. Stephen Tapscott. This is one of the largest grants ever to be awarded for Facioscapulohumeral Muscular Dystrophy research.

The grant from the Neurological Disorders and Stroke division of the N.I.H. will fund this 5-year research project entitled "The Pathogenesis of FSHD."  This grant will support the work of several researchers, in various laboratories around the world.  The overall project is under the administration of Dr. Tapscott at the Fred Hutchinson Research Center in Seattle, Washington.

The NIH project funding, which began on April 15, will support four different projects in the collaborating laboratories. 

Project 1: The genetic and epigenetic basis for FSHD, Silvere van der Maarel, Leiden University Medical Center, Leiden, The Netherlands

Project 2:  RNA regulation in FSHD, Stephen Tapscott, Fred Hutchinson Cancer Research Center, Seattle, WA

Project 3:   The role of CTCF in chromatin and nuclear organization at the FSHD locus, Galina Filippova, Fred Hutchinson Cancer Research Center, Seattle, WA

Project 4:   FSH patient derived IPS cells to study the developmental regulation of DUX4 transcription, Dan Miller, University of Washington, Seattle, WA

This collaborative project will work in partnership with Dr. Rabi Tawil at the University of Rochester & utilize the resources of the Wellstone Center there.

Dr. Stephen Tapscott and Dr. Dan Miller were the second research team to receive funding from Friends of FSH Research for their pilot study "FSHMD Related Defects in Human Myogenesis" in 2006. They have continued to receive annual financial support from Friends of FSH Research over the past 4 years. We are extremely grateful to them for their dedication and we are delighted to have helped them earn this grant. 

Dr. Stephen Tapscott
Dr. Stephen Tapscott's Corner

Friends of FSH Research was instrumental in supporting FSH research in Seattle and other parts of the country. Friends of FSH Research-supported pilot studies provided the preliminary data that was critical for the Program Project Grant application, and these pilot studies have resulted in additional NIH awards to my lab in Seattle and Dr. Michael Kyba's in Minneapolis, as well as grants from the Muscular Dystrophy Association to Dr. Miller and Dr. Joel Chamberlain in Seattle. The total investment by the Friends of FSH Research has been approximately $800,000 in pilot funds since 2005; the return on that investment is about $10 Million for FSH research from the NIH and the MDA combined!

Save the Date!

   "An Evening in Paris"
Evening in Paris

        JANUARY 29,2011
     "FiSHing for a Cure"

    Auction & Gala Event


celebrated chefs Dine out using the credit card registered with the Celebrated Chefs program and 5% of your dinner bill will go toward funding FSH Research!
Enroll your credit card today & MAKE A DIFFERENCE while you dine!!

Pacific Northwest Friends of FSH Research
217 19th Place
Kirkland, WA 98033
f- 425-576-9245