There is nothing specifically directed towards ALS research in Canada. We were fortunate in the past to be able to secure matched dollars through the Canadian Brain Research Fund, in partnership Brain Canada, but those were matched dollars, and the only reason we had those dollars available was because of the ice bucket challenge. Other than that, we are a Cinderella disease, and we can't get out of that cycle.
We provide for gaps in the health care system. Our societies across the country work in a very strong collaborative model, and we are filling a gap within the provincial health care systems to provide hospital beds, wheelchairs, ceiling lifts, ramps, and things that enable people to stay in their homes, where they are best cared for, and out of the health care system.
We're grassroots fundraising organization, and we're now back to the fundraising levels we were at prior to that one anomaly, so we are back to about $2 million that we have to direct towards research. There is not the same opportunity going forward for the $10 million that we secured from Brain Canada, because we don't have a massive pool to draw from.
Aside from that, our researchers have the opportunity to apply to programs like CIHR. However, because we are a relatively small population, both in terms of the number of Canadians living with ALS and the number of researchers, we have a very small opportunity for success within CIHR. Once again, it becomes this Cinderella disease. How can we possibly break this cycle using population-based research funding models or population-based research support?
I would even challenge that as we're talking about the support of clinical trials, we're talking about registries. The Canadian Institute for Health Information does not get down to the level of ALS when looking at a neurodegenerative disease, so the data collection on ALS within Canada is done by societies like mine, in partnership with donor-funded, volunteer-based organizations across the country. In P.E.I. there are three volunteers supporting the people living with ALS in their province. They are trying to help collect data to support advocacy efforts and to support clinical trial information. We need other systems in place to support rare disease, and diseases like ALS.