ALS Canada Advocacy Update, July – September 2025

Qalsody – Canada’s Drug Agency Draft Recommendations

• On August 6, 2025, Canada’s Drug Agency (CDA) released the draft recommendations for Qalsody (tofersen), recommending reimbursement with conditions for adults who have ALS associated with a pathogenic variant in the SOD1 gene. We are pleased see CDA’s criteria reflect the needs of people living with SOD1-ALS in Canada.
• ALS Canada provided feedback on the draft recommendations to ensure the voices of people living with ALS are included in the decision-making process. CDA will review the feedback received and issue its final recommendations in the coming months. We remain committed to advocating for timely and equitable access to approved therapies.

E-advocacy Campaigns Launched

• In July, ALS Canada launched a letter-writing campaign “Welcome to Parliament: A Message from Canada’s ALS Community” to support the ALS community’s federal advocacy efforts by connecting participants with their local Member of Parliament (MP).
  • Over 450 letters have been sent to MPs across Canada sharing the priorities of the ALS community and the urgent need for federal leadership.
• In recognition of the Ontario government’s transformational investment in the Ontario Provincial ALS Program, ALS Canada launched a thank you letter-writing campaign in July. Participants can use this tool to send a letter of gratitude to the Premier and Minister of Health for their critical support.
  • Over 280 letters have already been sent to thank the government for taking action and to help keep ALS a priority on the government’s agenda.

Canadian Collaboration to Cure ALS

• On June 12, 2025, ALS Canada hosted the National ALS Research Summit which brought together researchers, clinicians, people living with ALS, caregivers and ALS organizations from across the country to explore the value of a national ALS research strategy in Canada, and identify bold, community-driven initiatives that will guide the ALS community’s federal advocacy focus. The Summit succeeded in uniting stakeholders around a shared vision for federal advocacy – the Canadian Collaboration to Cure ALS: a unified, coordinated strategy that will scale three high-impact Canadian initiatives: CAPTURE ALS, The Canadian Neuromuscular Disease Registry (CNDR), and The Canadian ALS Research Network (CALS) representing Canada’s strongest opportunity to lead in the global pursuit of a cure for ALS.
  • CAPTURE ALS is an open-science platform that collects biological data to understand why ALS affects each person differently,
  • The CNDR is a comprehensive system that tracks ALS in real-world settings to advance ALS care and research,
  • CALS is a network of clinicians across Canada who specialize in ALS research and clinical trials to improve equitable access to ALS clinical trials.
• The Canadian Collaboration to Cure ALS marks a renewed federal advocacy priority for the ALS community, requiring sustained advocacy efforts and strategic engagement to drive meaningful progress.
• ALS Canada and the ALS community is calling on the federal government to invest $50 million over five years in the Canadian Collaboration to Cure ALS to ensure no Canadian living with ALS is left behind.

2025 Federal Pre-Budget Consultation

• ALS Canada submitted a pre-budget submission on the Canadian Collaboration to Cure ALS as part of the federal government’s Pre-Budget Consultations in Advance of the 2025 Federal Budget.
• Our submission calls on the government to invest $50 million over five years in the Canadian Collaboration to Cure ALS to scale three existing Canadian initiatives in Budget 2025:
  • $35 million for CAPTURE ALS,
  • $7.5 million for the Canadian Neuromuscular Disease Registry (CNDR),
  • and $7.5 million for the Canadian ALS Research Network (CALS).

Canadian ALS Community’s Advocacy Day on Parliament Hill

• On October 1 and 2, 2025, people living with ALS, caregivers, researchers, clinicians, and ALS organizations from across the country gathered in Ottawa for the Canadian ALS Community’s Advocacy Day on Parliament Hill united in the call for the federal government to invest in the Canadian Collaboration to Cure ALS.
• The team of advocates engaged in hands-on training on how to best engage with Parliamentarians, held a reception on Parliament Hill alongside Members of Parliament from across parties, and engaged with over 30 Parliamentarians through meetings about the urgent need for federal investment in the Canadian Collaboration to Cure ALS.
• Stay tuned for an upcoming blog post about the Advocacy Day.

• From July to September, ALS Canada met with several MPs to discuss the ALS Community’s call to invest in the Collaboration to Cure ALS:
  • Office of the Honourable Chrystia Freeland (University—Rosedale)
  • MP Fares Al Soud (Mississauga Centre)
  • Office of the Minister of Health, the Honourable Marjorie Michel (Papineau)
  • Leslie Church (Toronto-St Paul’s), Parliamentary Secretary to the Minster of Jobs and Families