ALS Canada rallies around progress in research and a call for continued action this ALS Awareness Month

June highlights growing momentum in ALS research and the urgent need for sustained support and national recognition

TORONTO, June 01, 2026 (GLOBE NEWSWIRE) -- This ALS Awareness Month, the ALS Society of Canada (ALS Canada) recognizes meaningful progress in amyotrophic lateral sclerosis (ALS) research and care, while reinforcing that sustaining this momentum depends on Canadians taking action.

Each person has a 1 in 300 lifetime risk of developing ALS. Nearly 4,000 Canadians are living with the disease today. It is a progressive and fatal neurodegenerative disease, with most people facing a life expectancy of two to five years following a diagnosis. For many, it advances with startling swiftness, changing daily life for the person diagnosed and their loved ones within months.

ALS gradually takes away a person’s ability to move, speak, eat, and eventually breathe, as the brain loses its ability to communicate with muscles. Many people require care and equipment within a short period of time.

There are reasons to be hopeful. In 2025, Health Canada approved Qalsody (tofersen) for people living with SOD1-ALS, a treatment shown to slow disease progression. While not a cure, it demonstrates that ALS can be treatable when research is prioritized and properly funded. Early contributions from Canadian researchers, supported in part by ALS Canada, helped lay the groundwork for this progress.

Sustaining this momentum is a priority. In fall 2025, alongside the ALS community, ALS Canada went to Parliament Hill to advocate for the federal government to invest in the Canadian Collaboration to Cure ALS, a national initiative aimed at strengthening research capacity, expanding access to clinical trials, and accelerating discovery.

“Progress like the approval of Qalsody shows what’s possible when research is sustained and supported,” said Tammy Moore, CEO of ALS Canada. “But for people living with ALS today, the need for care, support, and better treatment options remains immediate. This June, we’re asking Canadians to come together, stand with the ALS community, and help drive the progress needed to achieve a world free of ALS.”

ALS Canada’s work across the country is made possible by the generosity of its donors, fueling investments in promising Canadian research, advocacy for improved care and sustained research funding, and national awareness. This support also helps ALS Canada provide people affected by ALS with trusted information, virtual programming, and meaningful connections, no matter where they live.

In Ontario, ALS Canada’s Community Leads provide community-based, one-on-one support to help people living with ALS navigate the healthcare system, while the Equipment Program ensures timely access to essential equipment, supporting safety, independence, and quality of life as the disease progresses. These programs are delivered by ALS Canada and funded by the Ontario government through the Ontario Provincial ALS Program.

Despite this progress, ALS remains underfunded and under-recognized in Canada. ALS Awareness Month is an opportunity to build awareness, recognize the experiences of people affected, and reinforce the need for continued investment in research and care.

ALS Canada is inviting Canadians to get involved throughout June:

• ALS Canada Walk to End ALS — Starting June 6, events will take place in 22 communities across Ontario to honour people affected by ALS and raise critical funds for the ALS Canada Research Program. Register or donate at: walktoendals.ca/ontario
• Lou Gehrig Day (June 2) with the Toronto Blue Jays — Although Lou Gehrig Day is recognized on June 2 each year, June 9, will be when the Toronto Blue Jays celebrate the day at Rogers Centre in support of the ALS community. Fans are encouraged to wear purple and help “paint the park purple” in support of people affected by ALS.
• Forward Together webinar — On June 18, join ALS Canada to learn how research and care are helping change what it means to live with ALS. Register at: https://advocacy.als.ca/page/171267/subscribe/
• Monthly Giving Match — Join the Circle of Hope in June and have your donation triple-matched by the Colwell-Ellis Charitable Foundation up to $5,000 – and get a foldable tote bag!
• Light It Purple — Landmarks across the country, including the Toronto CN Tower, Niagara Falls, and the Ottawa sign, are expected to light up purple in support of the ALS community.
• #aWorldFreeOfALS — Share your story, honour a loved one, or raise awareness on social media.

To learn more about ALS Canada’s work and how to get involved, visit als.ca.

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, we are 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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