Board of directors

ALS Canada’s Board of Directors provides strategic direction and oversight to ensure donor dollars are maximized to serve the organization’s areas of charitable purpose.

These leadership volunteers contribute expertise across various disciplines, a genuine passion for the cause, and a strong desire to make a difference. Below is our Volunteer leadership of the ALS Canada 2024/2025 Board of Directors.

Our founder: Arthur J. Hudson

Advisors

Community Services Advisory Council

The Community Services Advisory Council is composed of individuals with a variety of experiences with ALS who provide input and perspectives to support ALS Canada in improving the journey of people and families living with ALS in Ontario.

The Council serves in an advisory capacity to the Board, making recommendations for client service program delivery, community partnerships and provincial advocacy according to the strategic priorities.

Co-chairs

Kim Barry
Vice-President,
Community Services, ALS Canada

Matthew Rotenberg
ALS Canada Board of Directors

Scientific and Medical Advisory Council

The Scientific and Medical Advisory Council provides strategic advice to the Board and management of ALS Canada to ensure all research activities contribute to the vision of ALS Canada, are aligned with the organization’s strategic priorities, are informed by best practices, and are carried out with integrity. The Council also facilitates collaboration within the Canadian ALS research community and supports the Canadian ALS research community’s involvement in international initiatives.

Co-chairs

Chantelle Sephton, PhD
ALS Canada Board of Directors; Centre de Recherche CERVO, Université Laval

David Taylor
Chief Scientific Officer, ALS Canada

Gary Armstrong, PhD
The Neuro, McGill University

Vanina Dal Bello-Haas, PhD, PT
McMaster University

Martin Duennwald, PhD
Western University

Wendy Johnston, MD
University of Alberta

Cali Orsulak, BscPharm, BCPS, CDE
Patient Community Representative

Gerald Pfeffer, MD, PhD
University of Calgary

Richard Robitaille, PhD
Université de Montréal

Guy Rouleau, MD, PhD
The Neuro, McGill University

Michael Spivock, PhD
University of Ottawa

Paula Trefiak
Patient Community Representative

Christine Vande Velde, PhD
CR-CHUM, Université de Montréal

EX-OFFICIO:

Alyssa Barry – Chair, ALS Canada Board of Directors
Ari Breiner, MD – Ottawa Hospital Research Institute, CALS Chair
Colleen Doyle
– Director, Canadian Research, ALS Canada
Carolina Jung – Manager, Research Engagement and Impact, ALS Canada
Tammy Moore – CEO, ALS Canada
David Taylor – Chief Scientific Officer, ALS Canada

Advocacy Committee

The Advocacy Committee provides professional and personal insight to the Board of Directors and to Staff to help advance our advocacy program. This includes advising the organization on which ALS advocacy priorities to bring forward to government and how to achieve results most effectively. The committee also ensures that ALS Canada’s advocacy efforts align with our strategic plan and are undertaken with the utmost integrity. Members of this committee have a variety of experiences including people and families affected by the disease, government relations experts, health sector professionals, and leading academic ALS researchers.

Co-chairs

Richard Ellis
Executive Coach, global business executive & communications expert

Ilayda Ulgenalp
Senior Manager, Advocacy and Stakeholder Relations, ALS Canada

Lisa Flaifel
ALS Canada Board of Directors

Allan Kagedan
ALS Canada Community Ambassador, living with ALS

Barbara Kagedan
Caregiver, Retired Policy Advisor and Lawyer

Kris Noakes
ALS Canada Board member; Community Advocate, living with ALS

Sharon Ranalli
ALS Canada Board of Directors

Marc Roy
Vice-President of Public Affairs and Business Development at Sandstone Group

Dr. Karin Schnarr
CEO, Alcohol and Gaming Commission of Ontario

EX-OFFICIO:

Alyssa Barry – Chair, ALS Canada Board of Directors
Steffi Burgi – Coordinator, Advocacy and Stakeholder Relations, ALS Canada
Tammy Moore – CEO, ALS Canada

Senior Management Team

The Senior Management Team works together each and every day to ensure the person living with ALS is at the centre of everything we do.