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. As a result, Canadians living with ALS face limited access to participate and contribute to research that could accelerate progress toward a cure. These barriers are even more significant for Canadians living in rural, northern, and underserved regions.

Since the ALS Ice Bucket Challenge became a social media phenomenon in 2014, more than $20 million has been invested in Canadian ALS research due to the generous donations from Canadians, 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.

To scale and accelerate these efforts, investments from the federal government are crucial.

Our vision is for the federal government to play a leadership role in transforming Canada into a global leader in ALS research and drive progress toward 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:

Canadian Collaboration to Cure ALS

The Canadian Collaboration to Cure ALS is a coordinated strategy that will scale three existing Canadian initiatives – CAPTURE ALS, The Canadian Neuromuscular Disease Registry (CNDR), and The Canadian ALS Research Network (CALS) – to ensure every Canadian living with ALS can access, contribute to, and benefit from discoveries that could change the trajectory of their disease. These infrastructures are already operational, internationally collaborative, and ready to scale, but they require sustained federal funding to advance our understanding of the disease, accelerate discoveries, and make significant steps towards discovering effective treatments for ALS.

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: