ALS Canada welcomes ALS National Genetic Counsellor to lead pilot project

The ALS Society of Canada (ALS Canada) is pleased to announce that Maya Binet, MSc, has assumed the role of Canada’s first ALS National Genetic Counsellor. Based at the University of Calgary, this new position is part of a two-year, research-based pilot made possible through a generous $265,000 donation from TD Bank Group.

Genetic counselling is a growing area in ALS care, but access remains limited for many individuals and families across Canada. The International Alliance of ALS/MND Associations identifies access to genetic counselling and testing as a fundamental right of people living with ALS. While scientific progress has expanded our understanding of ALS genetics, the support systems to match that knowledge are still evolving. This role represents a proactive step by ALS Canada to explore how genetic counselling can better support the ALS community.

Maya’s work will focus on research, education, and national collaboration while supporting individuals in need across Canada through direct counselling. She will help identify how best to deliver genetic counselling in the ALS context, contribute to the development of trusted educational materials in partnership with ALS Canada, and generate insights that can inform future care and resources.

“We are thrilled to have Maya in this position, as her work will help shape the future of genetic support and resources for people affected by ALS,” said Tammy Moore, CEO of ALS Canada. “We are grateful to TD Bank Group for enabling this important step forward in addressing a growing need.”

Maya will be co-supervised by Dr. Gerald Pfeffer, clinician-scientist and Associate Professor at the University of Calgary, and Dr. David Taylor, Chief Scientific Officer at ALS Canada. She will also be working closely with the Canadian ALS Research Network (CALS) and international experts in ALS genetics, ensuring that knowledge generated in Canada contributes to global progress.

“Having Maya now in this unique, world-first role is very exciting, and I look forward to working with her to advance all aspects of genetic counselling, education and research,” said Dr. Taylor. “Our goal is for Canada to become a world leader in our approach to ALS genetics, and she will be a key player in making that happen.”

While this role will not be available as an open service for clinical genetic counselling requests from the public, it will establish an understanding of the national need and aim to support many Canadians in the process. Maya will also advise ALS Canada on its educational resources, awareness campaigns, and advocacy efforts to ensure that Canadians affected by ALS have access to accurate, up-to-date information about genetics and the disease.

Referrals to the ALS National Genetic Counsellor will be facilitated through ALS Clinics. ALS Canada looks forward to sharing updates as this work continues.