Other initiatives

In addition to funding ALS research across Canada, we bring together the national ALS research community to share ideas and information and collaborate as a unified group in support of our vision to make ALS a treatable, not terminal disease.

We also support the Canadian ALS research community in contributing to international ALS initiatives that pool our resources and knowledge, enabling us to work together on solving problems that can’t be tackled alone.

By bringing the national and international ALS research communities together, the opportunities for ALS breakthroughs grow.

ALS Canada Research Forum

This annual event hosted by ALS Canada is a venue for researchers to share ideas, form new collaborations and connect with people living with ALS. The forum is attended mainly by the Canadian research community and also, people living with ALS and their family members, volunteers, donors, sponsor representatives and ALS Canada board members.

Event Sponsorships and Travel Awards

To be able to respond nimbly to new ALS research discoveries, ALS Canada sponsors ad-hoc gatherings of ALS researchers to share knowledge on timely topics related to ALS.  Sponsorship requests are reviewed and assessed by ALS Canada’s Scientific and Medical Advisory Council. Recent examples of sponsored events include a bi-annual international workshop on frontotemporal dementia in ALS, the global ALS Clinical Trials Guidelines workshop and the Symposium de la Fondation André-Delambre sur la sclérose latérale amyotrophique (SLA).

We also provide travel stipends to up to 15 Canadian ALS researchers each year to present their work at the International Symposium on ALS/MND. Organized by the International Alliance of ALS/MND Associations,  it is the premiere international ALS research conference in the world.

Contact us to learn more about sponsorship funds or travel awards.

ALS Disease Registry

The ALS Canada research program has also supported building the foundation of a national registry for ALS, housed in the Canadian Neuromuscular Disease Registry (CNDR). This database is designed to learn more about the clinical aspects of Canadians living with ALS and the care they receive. This tool, alongside the Canadian ALS Best Practice Recommendations are working towards a standard of care for people living with ALS across the country.

Best Practice Recommendations

In November 2020, the first-ever ALS Canadian best practice recommendations (BPRs) were published in the Canadian Medical Association Journal. Developed over a number of years by a working group of Canadian ALS clinicians, this document represents what specialists in ALS care agree should be the standard of care for any Canadian diagnosed with ALS. They also serve as a tool to empower Canadians living with ALS, their families and healthcare providers to make informed, collaborative decisions and advocate for optimal care consistent with the best available evidence and expert consensus. ALS Canada has supported all aspects of the evidence-based process to develop the recommendations, including convening the working group and professional literature searches.