ALS is an incredibly complex disease. However, the field of ALS research has come a long way in recent years, through work in the laboratory, yet we still don't understand human ALS well enough.
What do I mean by that? One of the scary things about it is that even without pre-existing conditions some people are genetically or biologically susceptible to having more difficulty with infections—COVID-19 as an example—than are others. The world is spending billions of dollars trying to figure that out.
As is the case with COVID-19 infection, the journey with ALS is different for everyone. Some people, like Monsieur Bélanger, will see symptoms begin in their speech and swallowing muscles, or like him will progress very rapidly, while others will have “limb onset” disease or cognitive impairment or will progress more slowly.
We need to understand this. To effectively treat ALS with personalized medicine to get the right treatments to the right people, we need an investment in CAPTURE ALS. We appreciate that there's been a significant commitment to support the development of a rare disease strategy in Canada. CAPTURE ALS represents tangible action that can be taken in the rare disease space in a way that will help inform the creation of such a strategy. CAPTURE ALS will provide meaningful data that will strengthen policy development. No other rare disease is set up as well for this. Let CAPTURE ALS be a catalyst for your rare disease strategy.
CAPTURE ALS will also position Canada as a first choice for pharmaceutical investment and clinical trials, which in turn means that Canadians will be first in line for access to promising therapies. With CAPTURE ALS, Canada will have a level of real-world data, so desired by pharmaceutical companies, that will be unmatched by any other country. The learning from CAPTURE ALS will create an environment for more efficient clinical trials and more effective therapies, saving billions of dollars in the long run.
Faster access to the best experimental and proven therapies is urgently needed by the passionate ALS patient community, and no doubt many of you have witnessed the power of that message through the amazing advocacy of your constituents. Investment in CAPTURE ALS will signal that the federal government shares in that priority by creating an environment in which a diagnosis of ALS in Canada is met with leadership, doing everything possible to bring innovation and hope here.
CAPTURE ALS is the culmination of decades of investment in building world-class Canadian ALS research and clinical infrastructure, bringing together innovative new collaborations from across the country. Other countries, like the United States and Australia, are investing far more in ALS research, but here, for a fraction of their investment, Canada has an opportunity to do something truly transformational.
Finally, we have confirmed seed funding to launch CAPTURE ALS in 2021. CAPTURE ALS has been validated through a rigorous peer-review process, in competition with other national initiatives, and government investment will leverage this seed funding, taking CAPTURE ALS from a pilot project to a full platform. Without this ability, many of the impacts we've outlined today would never be achievable.
Thank you again for the opportunity today to present to you CAPTURE ALS and the reasons why we believe it will provide a win for Canadians on so many levels and will have unprecedented impact on the people we serve, those living with ALS today and those who will be diagnosed tomorrow.