Awaiting the News - NIH Funding For FSHD Research in Seattle

Dr. Stephen Tapscott, based at the Fred Hutchinson Research Center was one of the Friends of FSH Research's pilot grants in 2006. He and Dr. Dan Miller received a two-year grant for $100,000 for their study "FSHMD Related Defects in Human Myogenesis." This was just the beginning.....

A grant application was sent to NIH in May 2009 that includes several collaborative projects on FSHD to be conducted by the Fields Center in collaboration with the Fred Hutchinson Cancer Research Center in Seattle. This application will solidify the Fields Center’s collaboration with Dr. Stephen Tapscott’s laboratory in Seattle as well as bring in two additional research groups at the Fred Hutchinson Cancer Research Center solidly into the FSHD research arena. We are very hopeful that this proposal will be funded because of the strength of the research data presented and the fact that the Field Center provides the necessary infrastructure to assure the success of this venture. If funded, this project will significantly boost the research efforts into finding the cause of FSHD and the development of a rational approach to treatment.

from The Fields Center's, University of Rochester
Wellstone Muscular Dystrophy Center


We are eagerly and anxiously awaiting word from the NIH regarding this larger, more expansive grant application funding. If awarded, the Tapscott laboratories will have the funding to move this work at a more rapid pace and those with FSH Muscular Dystrophy will have reason to have great hope!

Life With FSHD - Video production

This video production was made for Friends of FSH Research and was shown at their 6th annual "FiSHing for a Cure" Auction & Dinner. All proceeds from this event will go toward funding FSHD research.

Please share this video with others - the more people are aware of this condition, the more possibility of getting the research funding necessary to move us closer to a treatment or cure.

Thank You.

'Excited, bewildered - in disbelief'

'Excited, bewildered - in disbelief'

For the last day of the Olympic torch relay, organizers brought out the big guns: Arnold Schwarzenegger, astronaut Julie Payette, Walter Gretzky, singers Jann Arden and Michael Bublé and Montrealer Keith Martin.

Martin, 24, is the young man The Gazette profiled in 2008 when he cycled across Canada to raise money for muscular dystrophy.

Martin has the muscle wasting disease, which made his journey all the more poignant.

In his last semester at the University of British Columbia, he is a volunteer for the winter games at the hockey arena and was chosen to carry the torch through the streets of Vancouver.

After barely sleeping three hours on Thursday night because of nerves and getting up at 3 a.m. to tape up the logos on his runners (no advertising allowed) Martin was dropped off for his turn carrying the Olympic torch, on East 1st St. "I am incredibly excited, bewildered, and generally in complete disbelief," Martin wrote in an email before the run.

Read more: http://www.montrealgazette.com/sports/Excited+bewildered+disbelief/2558795/story.html#ixzz0fUErVz2C

Muscular Dystrophy Canada Ambassador Keith Martin to Carry Olympic Torch

Muscular Dystrophy Canada Ambassador Keith Martin to Carry Olympic Torch

Feb 11, 2010

VANCOUVER, BRITISH COLUMBIA--(Marketwire - Feb. 11, 2010) - Muscular Dystrophy Canada Ambassador Keith Martin will take to the road - again! Keith will carry the Olympic Torch along East 1st Street Avenue from Salsbury Drive to Semlin Drive in Vancouver on Friday, February 12 at 10:00 AM PST.

Keith was diagnosed with Facioscapulohumeral Dystrophy (FSHD) in October 2005. FSHD is an autosomal dominant disorder that affects the skeletal muscles. FSHD occurs in the Canadian population at an estimated frequency of about one in twenty thousand.

Keith gained national recognition when he and four friends - The Flying Five - participated in the Moving Muscles Ride 2008. They cycled across the country raising $150,000 along the way through a letter campaign.

Currently in the process of completing a Bachelor of Applied Science at the University of British Columbia, Keith is proud to be a part of the Torch Relay.

"I am a huge fan of the Olympics! I think it's amazing how the world comes together to celebrate the competing athletes and their achievements. The passion and pride is incredible," Keith wrote in an email.

"Being in Vancouver for these Olympics is that much more special. It's truly a once-in-a-lifetime opportunity."

Keith Martin along with Danielle Campo, Russ Howards and Danielle Peers, who carried the Olympic Torch in January in Edmonton, are Muscular Dystrophy Canada's National Ambassadors.

Muscular Dystrophy Canada's mission is to enhance the lives of those affected with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. For more information on muscular dystrophy or Muscular Dystrophy Canada, visit www.muscle.ca.