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Advocacy

ALS Action Canada was created to ensure that ALS patient voices are seen and heard wherever ALS is the subject. Through centring and raising patient voices, we increase awareness about ALS and its impact, and work tirelessly to inform policy, process, support, and funding change. From letter campaigns to Canada Drug Agency, to federal pre-budget submissions, meetings with Health Canada, drug reimbursement review recommendations, and papers including “Urgent Access to Promising Treatments Available Worldwide”, and the “Triple Jeopardy Report”, ALS Action Canada is laser-focused on the most important and timely issues important to ALS patients and their communities.  We create and deliver direct responses and proactive communication to these issues, informed by the diversity of lived experience and expertise of our patient, caregiver, and expertise community.

ADVOCACY 

Patient Persectives Highlight Importance of Modest ALS Treatment Gains

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). The Boddy et al paper proposed that a new drug for ALS should only be considered effective if it showed a difference of almost 4 points from placebo on the ALS Functional Rating Scale, within three months of the start of the clinical trial. 

For example, if the average ALSFRS score was 36 at the start of the trial, a difference of 4 points would be a 40% slowing of the disease compared with placebo. It was Boddy et al’s position that this was the minimum important difference (MID) that would be considered meaningful by patients. 

Read the article

ADVOCACY 

How Effective Does a New Drug for Amytrophic Lateral Sclerosis Need to Be? The patient perspective

United on Parliament Hill: Advocates and NHL Legends Rally for ALS Awareness. In a powerful demonstration of unity, Parliament Hill played host to an extraordinary evening where the worlds of hockey and advocacy converged to fight against ALS. The ALS Advocacy Reception marked a significant milestone in the battle against this devastating disease. Surrounded by former teammates, dignitaries, and supporters, former NHL player and ALS advocate Mark Kirton was at the center of the evening. Diagnosed with ALS in 2018, Kirton’s tireless efforts have mobilized Canada’s hockey community and inspired action nationwide. The event celebrated a monumental achievement: the ALS Super Fund, established just nine months ago with the support of Canada’s seven NHL teams, has raised $1 million for ALS research and awareness. 

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