friends of FSH Research


September 2010 FSH Research Meeting

Posted by George Shaw on September 16, 2010

Friends of FSH Research and the Fred Hutchinson Cancer Research Center co-sponsored the September 2010 Research Meeting held on the 15 and 16th at The Hutch in Seattle. This brought together the various labs which have been collaborating in an effort to push ahead on FSH research through an open exchange of unpublished research, current work (including at one point raw data that had been produced the night before), and plans for the future. Through a strict pledge to respect and safeguard each other's work, the international group has created an atmosphere of trust and cooperation which has driven progress at an amazing rate, including the recent publication of the paper by members of this group on the role of DUX4 in this disease. Although members do communicate throughout the year, this is a chamce for all collaborators to meet face-to-face at one time.

Pictured left to right:
Paul Muhlrad
Dennis Shaw
Dan Miller
Gala Fillippova
Jeff Chamberlain
Joel Chamberlain
Kyle Siebenthall
Stephen Tapscott
Silvère van der Maarel
Lauren Snider
Rinse Klooster
Greg Block
Michael Kyba
Jack Shaw
(Linda Geng not pictured)


The group met for two solid days, with each lab making presentations of their work, followed by discussion of problems encountered and a sharing of ideas on directions and priorities. A long group dinner each day allowed for discussions to continue (after which some returned to their labs to continue work late into the night). There was a palpable sense of excitement in the group, caused both by the progress made and the attention garnered from the recently published paper on the role of DUX4 in the disease. After so many years of frustration and seemingly slow progress, the group was in a position to seriously discuss possible methods of therapy. There are still many unknowns, but the atmosphere was quite different from previous years.

Paul Muhlrad (Director of Basic Research, MDA) once again represented the MDA, providing assurance of that organization's keen interest in furthering research on finding a cure for FSH and on our continuing research partnership. Mr. Muhlrad echoed other participants' reactions to this gathering: I think this was a milestone meeting, coming on the heels of the Science paper. The group now has some clear focus on where to best focus efforts, including clear directions for therapy development. It’s a very exciting time in FSHD research, and this little consortium that gathered in Seattle is right at the center of all the action.

Funding provided by Friends of FSH Research continues to help these labs concentrate on finding the exact cause of FSH and from there a cure. Several of these researchers will be attending the upcoming FiSHing for a Cure Auction, the main funding raising event for Friends of FSH Research.


Gregory J. Block, M.Sc., Ph.D.
Dr. Jeff Chamberlain, Ph.D.
Dr. Joel Chamberlain, Ph.D.
Dr. Galina N. Filippova, Ph.D.
Linda Geng
Rinse Klooster, Ph.D.
Dr. Michael Kyba, Ph.D.
Dr. Silvère van der Maarel, Ph.D.
Dr. Dan G. Miller, M.D., Ph.D.
Paul Muhlrad, Ph.D.
Dr. Dennis W. Shaw, M.D.
Jack C. Shaw
Kyle T. Siebenthall
Lauren Snider, Ph.D.
Dr. Stephen J. Tapscott, M.D., Ph.D.