ALS Canada announces first-of-its-kind National ALS Genetic Counsellor with funding from TD Bank Group

The initiative will provide virtual support to Canadians affected by ALS nationwide through genetic counselling, connecting people to local genetic experts, and providing education on ALS genetics

TORONTO, Nov. 14, 2024 (GLOBE NEWSWIRE) — The ALS Society of Canada (ALS Canada) is proud to announce Canada’s first National Genetic Counsellor dedicated to supporting people affected by amyotrophic lateral sclerosis (ALS), including people with a family history of the disease. Thanks to a $265,000 donation from TD Bank Group (TD), the two-year pilot project aims to provide access to crucial services delivered through virtual care, helping individuals understand their genetic risk and navigation of potential treatment options.

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ALS is a neurodegenerative disease that progressively paralyzes individuals as the brain loses the ability to communicate with the muscles. People living with ALS often experience a swift decline in their ability to walk, talk, eat, swallow, and eventually breathe, with four out of five people dying within two to five years of diagnosis. There is no cure, and limited treatment options are currently available.

The International Alliance of ALS/MND Associations identifies access to genetic counselling and testing as a fundamental right of people living with ALS. Advances in information and care for individuals at high genetic risk of ALS have come a long way, but the resources in most countries don’t exist to match. ALS Canada has taken a progressive step in identifying an innovative solution to this emerging need and is grateful to TD for their commitment to providing the financial means for this national resource to support families affected by ALS nationwide.

“Nearly 4,000 Canadians are currently living with ALS, and the care and support they receive can vary depending on their location. We’re incredibly proud to work with TD to fund a virtual genetic counsellor position accessible to all Canadians, regardless of where they live,” says Tammy Moore, CEO of ALS Canada. “Having a major financial institution like TD step forward and commit a transformative gift will significantly impact the lives of people living with ALS and their families. It also sets a powerful example, and we hope it inspires other corporations to consider how their contributions can be future shaping by driving progress in ALS care and research.”

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The pilot project will be based at the University of Calgary in collaboration with Dr. Gerald Pfeffer, Assistant Professor in the Department of Medical Genetics, who will co-supervise the National Genetic Counsellor. The role will also be integrated into the Canadian ALS Research Network (CALS), which unites clinicians specializing in ALS research and care across the country and will be connected to an international network of ALS genetic and genetic counselling experts.

“Timely diagnosis and compassionate care are essential for ALS patients and their families, and we’re proud to support ALS Canada’s work to offer virtual services that can help patients understand their genetic risk and make informed decisions about their health. Through the TD Ready Commitment, our corporate citizenship platform, we aim to support initiatives that provide access to critical tools, services, and care for people facing complex health conditions like ALS,” says Richard Lennon, National Granting Manager, Better Health, Sustainability & Corporate Citizenship, TD Bank Group.

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In addition to providing direct, virtual counselling to those in need, this role will be a central point of contact for connecting Canadians to local genetics experts and genetic counsellors while establishing an education plan to support all Canadians in better understanding the genetics of ALS.

“Nearly everyone I’ve met over my many years at ALS Canada has wondered how genetics might relate to their disease. In 2024, we still have a lot that we don’t understand, but our ability to provide critical information to support people affected by, or at risk of, ALS has vastly evolved,” says Dr. David Taylor, Vice-President of Research and Strategic Partnerships, ALS Canada. “With an effective therapy now available for some people with a specific genetic variant and more clinical trials to come that will be aimed to help specific genetic subgroups, the National Genetic Counsellor truly has the potential to change the course of lives. This is only the tip of the iceberg for the impact this role can have, and I’m excited to start the work.”

ALS Canada and TD recognize the urgency felt by individuals affected by ALS and health care providers eager to refer families to this critical resource. The search for a highly qualified candidate for this role is underway, and an update will be provided once the position is filled.

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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
[email protected]
437-703-5402

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