ALS community urges federal government to act now on research investment

Advocates on Parliament Hill call for immediate federal investment to accelerate progress, protect Canadian research data, and build on Canada’s leadership in ALS research to drive innovation

OTTAWA, Oct. 02, 2025 (GLOBE NEWSWIRE) -- Today, people living with amyotrophic lateral sclerosis (ALS), caregivers, clinicians, researchers, and advocates from across Canada are coming together on Parliament Hill with a clear message: without urgent federal investment in ALS research, Canadians diagnosed with ALS will miss a unique window of opportunity to contribute to a cure, while ultimately being at the front of the line to receive next generation treatments.

In Canada, people living with ALS face significant barriers to participating in clinical trials and research that could expand our understanding of the disease and speed the development of treatments. These barriers are particularly acute for Canadians in rural, northern, and underserved regions. This inequity is not due to a lack of expertise or infrastructure, but an inability to scale up world-class research initiatives without the support of the federal government.

Nearly 4.000 Canadians live with ALS, also known as Lou Gehrig’s disease, which is a fast-progressing and fatal illness. It gradually takes away a person’s ability to talk, walk, eat, swallow, and eventually breathe, with most cases resulting in death within two to five years. There are a few treatments available, and no cure. While countries like the United States, Australia, and the United Kingdom have invested heavily in ALS research, Canada has not kept pace.

Many Canadians living with ALS are turning to U.S.-based research opportunities and clinical trials, a lost opportunity for Canada. Personal health data collected abroad is inaccessible to Canadian researchers and vulnerable to foreign funding cuts, which slows research progress and puts Canadian lives at risk.

“Canada has the world-class talent and infrastructure to provide research opportunities nationwide, but federal leadership is missing,” said Tammy Moore, CEO of the ALS Society of Canada. “Every day without investment is a day lost for people and families facing ALS. Canadians have already invested, and we need the federal government to act now so their efforts pay off. This is about securing data here at home, expanding access to clinical trials for all Canadians with ALS, and accelerating the search for treatments that people urgently need today and for the future.”

The ALS community is calling for a federal investment of $50 million over five years to support the Canadian Collaboration to Cure ALS. This national strategy will unite and scale three initiatives already driving progress across the country:

• CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS – A globally collaborative, pan-Canadian open-science platform collecting clinical data, imaging, genomics, and biosamples to uncover why ALS affects people differently. With investment, it can expand from four to 12 sites nationwide, drive critical biomarker discovery, and build on Canada’s leadership in ALS research.
• Canadian Neuromuscular Disease Registry (CNDR) – A national registry that follows people living with ALS from diagnosis onward, gathering real-world data to improve care, support trial access, and guide policy. Federal investment will ensure every Canadian with ALS can enroll, generate evidence for drug access, and uphold Canadian data sovereignty.
• Canadian ALS Research Network (CALS) – A network of clinicians across Canada that attracts and runs global clinical trials. With investment, CALS can expand trial access to new regions, so individuals in rural and remote communities can access experimental therapeutics closer to home. The investment would greatly strengthen Canada’s leadership in bringing new therapies to people living with ALS during a time of unprecedented opportunity.
  
  

For people living with ALS, each day matters.

“ALS is a relentless disease with rapid progression and devastating outcomes, yet we are still far from a cure. Time is not on our side," said Faye Murphy, an ALS Canada Community Ambassador, diagnosed with ALS in 2024. "Without research, ALS remains a death sentence; with it, we can move toward making ALS a treatable disease. We won’t have a voice for much longer, which is why federal investment in ALS research is so urgent.”

More than 40 delegates from across Canada are meeting today with Members of Parliament and Senators to champion this investment. Advocates say the choice is critical. Canada must step up now to secure ALS research, accelerate progress, and lead globally, or it will fall further behind while Canadians continue to die without options.

About ALS and the ALS Society of Canada

Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Nearly 4,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis.

The ALS Society of Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity, and advocating for equitable, affordable, and timely access to proven therapies.

Responding to the tremendous need for current and credible ALS knowledge, awareness, and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS.

Founded in 1977, ALS Canada is a registered charity whose work is powered by generous donors who share our vision of a world free of ALS.

Join the conversation and connect with the ALS community online. Find ALS Canada on X, Instagram, or like our page on Facebook. Visit als.ca to find out more.

For more information
ALS Society of Canada
media@als.ca
437-703-5402

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