Mr. Chairman and honourable members of the Standing Committee on Finance, thank you for the invitation to appear before you today.
I am Tammy Moore, the CEO of the ALS Society of Canada, and I'm joined by Dr. David Taylor, vice-president of research. We appreciate this opportunity to present CAPTURE ALS, a first-of-its-kind Canadian research platform. ALS is a terminal neurodegenerative disease resulting in progressive paralysis and eventually the loss of the ability to move, to speak and to breathe.
Many members of this committee will be familiar with the devastation of ALS through the experience of your parliamentary colleague the Honourable Mauril Bélanger, who died within a year of his diagnosis. His progression was swift but not uncommon, as 80% of people living with ALS die within five years of diagnosis.
CAPTURE ALS is a game-changing national initiative that will elevate Canada into being a world leader in the health research sector and transform the way we understand rare diseases, conduct clinical trials and develop new treatments. Moreover, it will allow all parties to act on a commitment they made in 2017, when they unanimously passed motion 105 in memory of Mauril Bélanger, challenging government to play a leadership role in supporting ALS research and to support national efforts to find a cure for ALS.
CAPTURE ALS will enable the government to act on its commitment to the rare disease community and the development of a rare disease strategy. It will position Canada to be a leader in helping Canadians have timely access to clinical trials and future ALS therapies. It will pivot an innovative research model that will be applied to other disease areas, including COVID-19, as well as rare diseases beyond ALS. It will attract pharmaceutical interest and investment in Canada, and make an important leadership contribution to the global effort to understand and treat ALS.
I will now pass it over to Dr. Taylor to speak further to the numerous benefits to Canadians that will result from an investment in CAPTURE ALS.