Research Funding to Create a Future Without 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 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.

But as of 2018 our research effort has returned to its traditional funding levels of $1.5 to $2 million per year through the ALS Canada Research Program, supported through the generosity of donors. We are at risk of losing research momentum at a time when ALS research holds more promise than ever before.

How we advocate

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, a project that seeks to answer the question of why disease progression in ALS can be so different from one person to another in order to understand the causes of ALS better.
  • 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 discuss the future of health research funding in Canada:

Each year we develop a pre-budget submission as part of the Federal Budget consultation process led by the House of Commons Standing Committee on Finance. Each submission has focused on the need for direct ALS research funding, including calling upon the federal government to support CAPTURE ALS and Project MinE.

ALS Ambassadors Carol Skinner and the late Eddy Lefrançois, who died in early 2019, along with Denis Blaise and Bill Duff led a letter-writing campaign in October 2018 urging Canadians to email their Member of Parliament asking for dedicated government funding for ALS research and in support of ALS Canada’s 2019 pre-budget submission. Over 2,300 Canadians participated in the initiative, which is now closed.

2020 submission

2019 submission

2018 submission

2017 submission

CIHR Funders’ Forums

As a member of Health Charities Coalition of Canada, we have worked with the Canadian Institutes of Health Research (CIHR) and other organizations to inform the strategic direction of federal health research funding through the CIHR funders’ forums.

Canada Research Coordinating Committee

The Canadian Research Coordinating Committee (CRCC) led a national consultation in August 2018 for stakeholders to provide feedback on how to shape research in Canada. The consultation aimed to develop a system of federal support for science that is bold, world-leading and contributes to the social and economic well-being of Canadians. ALS Canada responded to a survey as part of the consultation process focused on developing a funding model for international, interdisciplinary and high-risk research activities.