Research Funding to Create a World Free of ALS

ALS is a grossly underfunded disease globally, but particularly in Canada. This underinvestment has affected the pace of scientific discovery in the field despite the urgent need for advancements in understanding and treating the disease.

Since the ALS Ice Bucket Challenge became a social media phenomenon in 2014, more than $20 million has been invested in Canadian ALS research because of the money generously donated by Canadians and matched by Brain Canada, with financial support from Health Canada. This influx of funding has enabled ALS researchers to make significant steps towards discovering effective treatments for ALS.

We believe the federal government has a role to play in providing dedicated funding for ALS research, through direct funding for the ALS Canada Research Program or financial support for the agencies that manage health research funding, like the Canadian Institute for Health Research (CIHR). We want the community of people living with the disease to be able to focus on their individual needs, rather than giving a charitable donation in the hopes of finding a cure.

Since 2016 we have been advocating to the federal government to take a leadership role in supporting direct ALS research funding. We have called on the government to support:

CAPTURE ALS

CAPTURE ALS, a project that is designed to significantly contribute to the global effort on ALS and will enable Canadian and global researchers to study, and for the first time understand, why people experience ALS symptoms and progression differently. By openly sharing the information gathered with other worldwide ALS initiatives, the essential knowledge collected by CAPTURE ALS will position Canada as a major contributor in the field.

Project MinE

Project MinE, an international research partnership that is mapping the full DNA profiles of 15,000 people with ALS and 7,500 control subjects, establishing a global resource of human data that will enable scientists worldwide to better target the disease by understanding the genetic signature that leads someone to develop ALS.

We are participating in several initiatives to advocate for the federal government to invest in ALS research and position Canada as global leader in health research: