Shawn’s Story: Choosing Hope, Living Fully
At 57, Shawn lives in a small town in British Columbia’s northern Okanagan. He enjoys the beauty of the region and remains focused on living life to the fullest, despite an ALS diagnosis that arrived after a long and uncertain journey.
Shawn first noticed something was wrong in May 2022 when he developed a weak pinch grip in his left hand. What followed was more than a year of appointments, referrals, tests, and alternative explanations.
Finding Courage, Purpose, and Community While Living with ALS
Amanda Tam shares her perspective on living with ALS, the importance of accelerating research, and what keeps her moving forward. Through honesty, advocacy, and awareness, she is helping build understanding and community while ensuring the experiences of people living with ALS remain at the centre of conversations about care, research, and support.
Volunteer Spotlight: Turning Advocacy into Action
During National Volunteer Week, we recognize volunteers who are helping drive progress toward ending ALS. Chris May brings decades of advocacy experience to ALS Action Canada’s Advocacy Committee – now with a deeply personal mission. Living with ALS, Chris is using his knowledge of government to help drive awareness, influence change, and push for progress toward ending ALS.
Courage to Fight: A Movement to End ALS Webinar Replay Featuring Patient Living with ALS, Louis Del Re
Hear from Louis Del Re, a person living with ALS, who has channelled his diagnosis into fundraising for the cause, and Leigh Naturkach, Executive Director of ALS Action Canada and Cause Leader of the ALS Super Fund, as they share what courage looks like up close. Watch the webinar
Feedback on Evolving Patient Group Input Submissions into the Drug Reimbursement Review Process
ALS Action Canada Submission to the Canada Drug Agency 1.1 What suggestions do you have for evolving the patient input process to focus on what is needed to support deliberations on the deliberative framework domains? The Advocacy Committee of ALS Action Canada (ALSAC) very much appreciates the extensive efforts being made by CDA’s Engagement Group […]
The Problem of Health Technology Assessment in Canada – Time for Health Canada to Provide Equitable Access to Drugs for ALS
Submission to the ALS Caucus 2025 1. Timeline of ALS Action Canada’s (ALSAC) interactions with Canada’s Drug Agency (CDA) and Health Canada (HC) from November 2023 – March 2025. March 2023: Minister of Health announced the National Strategy for Drugs for Rare Diseases. November 2023: Joint submission by ALSAC and the ALS Society to Suzanne […]
United on Parliament Hill: Advocates and NHL Legends Rally for ALS Awareness
Ottawa, September 25, 2024 – In a powerful demonstration of unity and determination, Parliament Hill played host to an extraordinary evening where the worlds of hockey and advocacy converged to fight against ALS. The ALS Advocacy Reception, organized in collaboration with ALS Action Canada, marked a significant milestone in the battle against this devastating disease. […]
Urgent Need for Enhanced ALS Care, Research Funding, and Access to Treatment
Submission to Provincial and Federal Government Representatives Building on our ALS Day on the Hill in September 2024, ALS Action Canada delivered a statement in direct response to the Federal Government’s 2023 announcement of a $1.5 billion National Strategy for Drugs for Rare Diseases, delivered to provincial and federal leaders. We acknowledged that while the […]
Joint Letter with ALS Canada to the Canadian Agency for Drugs and Technologies in Health (CADTH)
Submitted to Suzanne McGurn, President and CEO, Canadian Agency for Drugs and Technologies in Health (CADTH), and Minister of Health, Mark Holland November 30, 2023Suzanne McGurnPresident and CEOCanadian Agency for Drugs and Technologies in Health (CADTH)865 Carling Ave., Suite 600Ottawa, ON, Canada, K1S 5S8 Dear Ms. McGurn, Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive, […]
Triple Jeopardy for ALS Patients in Canada: The Link Between the Criteria for Diagnosis, Clinical Trials and Drug Reimbursement
April 2023Dr. Andrew DarkeALS Action Canada The diagnosis of ALS involves evaluation of Upper and Lower Motor Neurone signs and symptoms (UMN, LMN). The first diagnostic criteria were established by the World Federation of Neurology in 1994 at a conference in El Escorial, Spain. These El Escorial (EE) criteria were revised in 2000 (the Airlie […]