On October 1 and 2, 2025, people living with amyotrophic lateral sclerosis (ALS), their loved ones, clinicians, researchers, and representatives from ALS organizations across Canada, also including Quebec, gathered on Parliament Hill in Ottawa to call for urgent federal investment to accelerate research and ensure access to also new treatments.
An Urgent Situation for People with ALS
Nearly 4,000 Canadians currently live with ALS, also known as Lou Gehrig’s disease or Charcot disease (source: ALS Canada, press release).
ALS is a neurodegenerative incurable fatal illness that destroys motor neurons. People with ALS gradually lose their mobility, but also their ability to talk, eat and eventually breathe. Senses are not affected and 80% die within two to five years after the diagnosis.
Why Now?
While countries such as the United States, the United Kingdom, and Australia are investing heavily in ALS research, Canada has lagged. This is due in part to chronic underfunding of ALS research by the federal government and the lack of a coordinated research strategy.
As a result, many Canadians with ALS must participate in clinical trials outside the country, limiting their access to the latest scientific advancements, slowing the development of new treatments in Canada, compromising the sovereignty of our data, and hindering innovation.
A $50M Request Over Five Years
The ALS community is therefore calling on the federal government to invest $50 million over five years in the Canadian Collaboration to Cure ALS, to support three key initiatives:
- CAPTURE ALS – a pan-Canadian open science platform that collects clinical, genomic, and biological data to understand why ALS affects people differently.
Objective: To unlock the mysteries of ALS biology.
- Canadian Neuromuscular Disease Registry (CNDR) – a national database tracking people from diagnosis, generating real-world evidence to improve care and access to medications, while safeguarding Canadian data sovereignty.
Importance: Essential for advancing research and care through real-world data.
- Canadian ALS Research Network (CALS) – a network of clinicians attracting and conducting international clinical trials in Canada. With increased funding, it could expand access to trials in new regions, including remote communities.
Impact: A step toward more equitable access to ALS clinical trials.
With this investment, Canada could accelerate discoveries, increase the number of clinical trials, and position itself as a global leader in ALS research. It would also help connect rural and urban communities, create jobs, improve health outcomes, and strengthen the country’s international influence—all while building a smarter, unified system.
Discoveries from ALS research benefit not only people living with ALS but also those affected by other neurological diseases, such as dementia and Parkinson’s disease.
The ALS Society of Quebec in Ottawa
ALS Quebec was represented by Susan Kennerknecht, Claudine Cook, Dr. Richard Robitaille, Norman MacIsaac, Dr. Alec Cooper, Isabelle Lessard, Dr. Angela Genge, and Chantelle Sephton. Together, they met with MPs and senators to advocate for people living with ALS and support the requested federal investment.
In total, this national action represented more than 41 federal ridings across Canada, brought together 23 MPs, senators, and government representatives, and gave 9 MPs the opportunity to hear directly from the ALS community for the first time.
This initiative highlights the urgent need to act quickly for people living with ALS and their loved ones. Every investment in research represents a concrete step toward better treatments, improved access to clinical trials, and, ultimately, putting an end to ALS.