Thank you, Mr. Chair, for the opportunity to speak today.
Canadians with dystonia are with me as witnesses.
Dystonia affects everyone from all walks of life, ethnicities, and ages. It can affect a single body part or multiple sites throughout the body, causing painful involuntary spasms and muscle contractions.
The key stumbling blocks to helping Canadians are lack of awareness and lack of funding for dystonia research. For example, dystonia is six times more common than ALS; however, the Canadian Institutes of Health Research directed $2.4 million for ALS research and only $334,000 for dystonia in 2005. Research progress is being made with the $334,000 the federal government directed to CIHR last year.
We believe that Canadians need to know that in terms of the number of Canadians affected by dystonia, dystonia is falling behind. Indications are that over 50,000 Canadians are affected by this disease.
Groundbreaking discoveries have been made. The DYT1 gene has been identified for early onset generalized dystonia, and as a result of that discovery a protein associated with the DYT1 gene called torsinA has been discovered as well. A new technology is being applied to torsinA, and it has been seen to turn the mutated gene on and off in animal models. This holds great promise for humans with dystonia.
We can't stop now. There is an urgency to continued funding. We request that the federal government direct increased research dollars for dystonia to the Canadian Institutes of Health Research.
Thank you very much for your time and consideration.