ALS, amyotrophic lateral sclerosis is a neurodegenerative disease where the cells in the body that control movement die. The "living wires" which connect a person's brain to their muscles degenerate, leading to a loss of mobility and eventual paralysis, changes or complete loss of speech and eventually the ability to breathe. ALS is a terminal disease that has no cure, and no effective treatment. Approx. 2,500-3,000 Canadians are living with ALS. It is estimated 1,000 Canadians will die because of ALS and 1,000 will be newly diagnosed each year. The average lifespan is two to five years.
"We are incredibly grateful for all of the support and awareness for ALS in the last four months as a result of the ALS Ice Bucket Challenge"
This represents a record for donations to the ALS community in support of Canadians living with ALS and ALS research from one event.
ALS Societies will invest $10 million in ALS research and $6 million in programs that deliver critical support to Canadians living with ALS.
The ALS Societies are also proud to announce the funds for ALS research will be matched on a 1:1 basis through a new research partnership with Brain Canada, bringing the total investment in ALS research to $20 million.
This is the largest one-time investment in the ALS Canada Research Program in history and has been made possible by the donations received through the ALS Ice Bucket Challenge and the federal government's Canada Brain Research Fund.
The research projects selected for funding will be announced starting as early as December 2014."We are incredibly grateful for all of the support and awareness for ALS in the last four months as a result of the ALS Ice Bucket Challenge," says Tammy Moore, CEO, ALS Canada. "We know donors and our community will be pleased we have demonstrated strong stewardship of the gift we have received, and that, with the matching research funds from Brain Canada the total impact of the ALS Ice Bucket Challenge is $26 million. We want to thank all of our donors and assure you we understand how important this is to people and their families living with ALS."
"On behalf of the Government of Canada, I would like to thank all those Canadians who participated in the ALS Ice Bucket Challenge for their support for people living with ALS and their families," said Rona Ambrose, Minister of Health. "I am pleased to say the ALS Societies investment in research is being matched by the federal government's Canada Brain Research Fund so the donations from Canadians will be leveraged to their fullest potential. This combined investment is certain to have a transformative impact on ALS research."
"Brain Canada is proud to partner with ALS societies across Canada in this transformative new research endeavor", said Inez Jabalpurwala President and CEO, Brain Canada Foundation and NeuroScience Canada Partnership. "Combining our research efforts will without question accelerate the progress of finding a treatment and eventual cure for this terminal disease, and for other neurodegenerative diseases which have similar underlying mechanisms."
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