It all happened in Vegas! That's where the two founders of the FSHD Canada Foundation – Neil Camarta and Craig Kelley – first met while attending an FSHD conference in 2010. Both Neil and Craig have FSHD and are keen to see a cure happen sooner rather than later.
It was at this conference that Neil and Craig realized that the research into a cure for FSHD had reached some exciting milestones – but more heavy lifting was required to finish the job. And, clearly, to get the job done faster – a lot more money was needed.
Neil and Craig decided that the way they could fight FSHD would be to help fund the required research — in Canada and around the world. That's when the concept of the FSHD Canada Foundation was developed. It would be an organization dedicated to serving the needs of Canadians with FSHD — and particularly helping to find a cure. And — as they say — the rest is history!
Just recently, there have been two significant breakthroughs in FSHD research. First, the definitive genetic model for the disease was discovered just over two years ago. This is critically important — since it makes sure that the research is properly focused. Secondly, researchers have developed a cure for mice with FSHD. This is still a long way from having a cure for people — but its very exciting times in FSHD research. This spurred Neil and Craig to get the FSHD Canada Foundation up and running as soon as possible — so that the final push for a cure can be accelerated.
The FSHD Canada Foundation was created for Canadian's like Neil and Craig — and their families — who suffer from FSHD and want to do something about it. It's for Canadians who want to see a cure for FSHD happen as soon as possible.