As defence spending rises, ALS community calls for greater federal investment in ALS research

With veterans at higher risk of developing ALS, national delegation returns to Parliament Hill to advance a plan that could benefit everyone affected by the disease

OTTAWA, Ontario, Oct. 27, 2026 (GLOBE NEWSWIRE) — People living with amyotrophic lateral sclerosis (ALS), caregivers, clinicians, researchers, and advocates from across Canada are returning to Parliament Hill today to call for an urgent federal investment of $50 million over five years in the Canadian Collaboration to Cure ALS. With a life expectancy of just two to five years after diagnosis, people living with ALS cannot afford to wait.

As Canada increases defence spending, the ALS community is urging the federal government to recognize that supporting people who serve must extend beyond their years of service. Veterans are at higher risk of being diagnosed with ALS, adding urgency to the need for greater investment in research that could benefit nearly 4,000 Canadians living with ALS, and people diagnosed in the future.

“There is simply no time to waste for someone who is living with ALS,” said Tammy Moore, Chief Executive Officer of ALS Canada. “We have incredible researchers across Canada ready to accelerate this work, but they need sustainable federal funding behind them. A $50-million investment over five years is modest in the context of broader federal spending, but it could transform what is possible in ALS research, helping us better understand the disease, build stronger national data, bring more clinical trials to Canada, and give people living with ALS earlier access to potential new therapies.”

For people living with ALS, this ask is deeply personal.

“When you serve your country, you accept that there are risks, but I never imagined ALS would be one of the challenges I would face years later,” said Bob Gibson, a retired Royal Canadian Air Force pilot living with ALS. “We need to understand why veterans are at higher risk of developing this disease. I want those answers for my family, for the people serving today, and for future generations. We have an opportunity to invest in the research that can get us there.”

The Canadian Collaboration to Cure ALS brings together four strategic priorities, building on initiatives already advancing ALS research across Canada:

• 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.
• Access ALS – A national network designed to strengthen Canada’s capacity to conduct early-phase ALS clinical trials. Working alongside CALS, investment would build the infrastructure needed to attract more Phase 1 trials to Canada, giving people living with ALS earlier opportunities to participate in research exploring potential new treatments.

As more than 40 delegates from across the country arrive at Parliament Hill, their message to federal leaders is clear: Canada has the expertise, infrastructure, and momentum to accelerate progress in ALS. At a time when Canada is making significant investments in defence, supporting people who serve must also mean investing in a disease veterans are at higher risk of developing, and in research that could benefit everyone affected by ALS.

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