Federal Budget misses the mark for Canadians living with ALS

ALS community disappointed that Budget 2026 lacks dedicated funding for ALS research, renewing urgent calls on the federal government to commit $50 million over five years

OTTAWA, Ontario, Nov. 05, 2026 (GLOBE NEWSWIRE) -- The ALS Society of Canada (ALS Canada) says the federal government missed an important opportunity to change the future of amyotrophic lateral sclerosis (ALS), after Budget 2026 failed to include the investment in the Canadian Collaboration to Cure ALS that people living with ALS, families, clinicians, and researchers have been calling for.

"We are deeply disappointed. Canadians living with ALS and their families have repeatedly asked their government to give researchers the tools to give them more time," said Tammy Moore, Chief Executive Officer of ALS Canada. "The federal government had an opportunity in this budget to turn that urgency into action. It missed the mark. But this cannot be the end of the conversation. ALS does not stop after budget day, and neither will we."

The lack of funding comes just days after more than 40 members of the ALS community travelled to Parliament Hill to make the case directly to federal decision-makers ahead of Budget 2026. ALS Canada is urging the federal government to provide $50 million over five years to scale up programs funded by donors, accelerate ALS research, improve access to clinical trials, and strengthen the data on this fatal disease.

Nearly 4,000 Canadians live with ALS, and roughly 1,000 Canadians are diagnosed each year. Tragically, another 1,000 Canadians will die of ALS in that same time frame. Decades of research have consistently associated military service with a higher risk of ALS, yet researchers still do not know why this connection exists. Veterans living with ALS deserve answers, and Canada has a responsibility to pursue them. This lead-up to Remembrance Day was a perfect opportunity to demonstrate the commitment to support people who have served our country.

"I spent more than a decade serving my country. Now I am asking my country to help find answers," said Bob Gibson, a retired Royal Canadian Air Force pilot who was diagnosed with ALS in 2023. "The federal government has a duty to help investigate why veterans, like me, are at greater risk. This funding might not help me, but at least it may help other Canadians get more time with their loved ones."

The ALS community’s $50 million ask for the Canadian Collaboration to Cure ALS focuses on three urgent areas:

• Accelerating Canadian ALS research into possible causes, including why military members and veterans face a greater risk of developing ALS.
• Expanding access to clinical trials, giving more Canadians living with ALS access to promising therapies, regardless of where they live.
• Strengthening national data collection, giving researchers the information they need to better understand ALS, identify patterns, improve care, and accelerate discoveries.
  

"Canada has the researchers, the expertise and the infrastructure. What's missing is the coordinated federal investment to connect that work and scale it," said Ilayda Ulgenalp, Director of Advocacy and Stakeholder Relations at ALS Canada. "This budget was an opportunity to take a meaningful step forward. That opportunity was missed, but the need has not changed. Canadian families impacted by this devastating disease don’t have time to wait.”

The Burden of ALS

This comes just weeks after ALS Canada released its Burden of ALS study, which found ALS carries an estimated $628.2 million annual economic burden in Canada, with 78 per cent borne by patients and families. Families affected by ALS face an average annual burden of more than $123,000, including lost income, caregiving, equipment, home modifications and other expenses, and that is the money they spend, which doesn’t account for the unmet needs. The $50 million ask works out to about $10 million a year, less than two per cent of what ALS costs Canada annually.

Moore says the federal government still has an opportunity to show leadership.

"People living with ALS do not have the luxury of waiting for another budget," said Moore. "We are asking the federal government to work with the ALS community on a path to this $50 million investment. Every discovery matters. Every day matters."

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.

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