ALS Canada advances a national strategy for ALS genetics with support from TD

Building on the first-of-its-kind ALS National Genetic Counsellor initiative, funding will help expand genetic information, counselling, and pathways to care for people affected by ALS

TORONTO, Nov. 12, 2026 (GLOBE NEWSWIRE) -- Two years after the ALS Society of Canada (ALS Canada) launched a first-of-its-kind ALS National Genetic Counsellor pilot, renewed support from TD Bank Group (TD) will help build on that foundation and advance a broader national approach to ALS genetics to improve access to information, counselling, and care for Canadians affected by or at genetic risk of ALS.

Advances in ALS genetics are creating new possibilities for how the disease is understood and treated, including a treatment that can slow disease progression for people living with SOD1-ALS. As the science evolves, access to genetic testing, counselling, and trusted information is becoming increasingly important. In 2024, a $265,000 donation from TD helped ALS Canada meet this growing need by creating Canada’s first ALS National Genetic Counsellor role.

“The landscape of ALS genetics is changing rapidly, and with that progress comes an opportunity to improve how we support people affected by ALS and people who may be at genetic risk,” says Dr. David Taylor, Chief Scientific Officer, ALS Canada. “TD’s initial support allowed us to establish a first-of-its-kind national genetic counselling role. With this next phase, we can build on that foundation and work toward a more comprehensive approach that connects advances in genetics with the information, support, and care Canadians need.”

Renewed support will allow ALS Canada to build on that work through its ALS National Genetics Strategy, including continued genetic counselling and education, new approaches to genetic testing to help people with a family history of ALS better understand their own risk, Canadian-specific genetics guidelines, and new models of care and support for people at genetic risk of ALS.

“ALS Canada is building on important work to help people and families better understand and navigate the role genetics can play in ALS,” says Robyn Small, Senior Manager, Community Giving & Engagement, TD. “TD is proud to support the next phase of this work and help extend its reach to more Canadians.”

Since assuming the role of ALS National Genetic Counsellor in 2025, Maya Binet, MSc, has been working collaboratively in research, education, and direct counselling to help strengthen genetic support for people affected by ALS across Canada. Based at the University of Calgary, the role works closely with the Canadian ALS Research Network (CALS) and international experts in ALS genetics.

"It’s a particularly exciting and important time to be working in ALS genetics, with so much potential to change what the future looks like for people living with ALS and their families,” says Maya Binet, ALS National Genetic Counsellor, University of Calgary. “It’s encouraging to see this work already making a meaningful difference, both for individuals navigating an ALS diagnosis and families seeking information about their genetic risk. We are incredibly grateful for the opportunity to continue building on this momentum. It really feels like we’re just getting started."

Together, these efforts aim to build a more connected national approach to ALS genetics, helping ensure that advances in research and treatment are matched by the information, guidance, and support Canadians affected by ALS need.

To learn more about ALS and genetics, visit the ALS Canada Gene Hub.

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 that receives no core government funding – our 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