Advocacy

Recent pieces published in the international neurology journal, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, have sparked debate in the ALS community. 

In ALS Action Canada’s paper (Darke and Orsulak 2025), “How Effective Does a New Drug for Amyotrophic Lateral Sclerosis Need To Be – The Patient Perspective”, we argued against the proposal of Boddy et al (2025).

Submission to Taylor & Francis Online: Peer Reviewed Journals Andrew Darke PhD and Cali Orsulak BSc Pharm  A recent paper by Boddy et al (2025)1 advanced the argument that new drugs for ALS should only be considered to be effective if they demonstrate a separation from placebo in total ALSFRS-R

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

This coordinated day of action, spearheaded by ALS Canada, had representation from 41 ridings and included meetings with 23 MPs and Senators. Notably, nine MPs heard directly from the ALS community for the first time, underscoring the importance of this collective. The Canadian Collaboration to End ALS joined together for

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

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

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.

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

Submission to the Canadian Journal of Neurological Sciences. There was direct response published as a result in the Canadian Journal of Neurological Sciences: Rethinking Drug Reimbursement Criteria in Amyotrophic Lateral Sclerosis Andrew C. DarkeApplied Clinical Decisions, Stouffville, ON, Canada Clinical trials of new drugs for amyotrophic lateral sclerosis (ALS) typically

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