Early October in Ottawa, the ALS Society of Alberta (ALSAB) along with fellow ALS Societies, advocates, researchers, clinicians, and leaders from across the country came together for the Canadian Collaboration to End ALS.

*Together on Parliament Hill, ALS partners from across Canada united for the Canadian Collaboration to End ALS to call for stronger investment in research and care.*

This two-day national gathering united Members of Parliament, clinicians, people living with ALS, and loved ones. Their message was clear and urgent: the time is now for federal leadership and a $50 million investment in ALS research that would provide funding for Canadian Neuromuscular Disease Registry (CNDR), CAPTURE ALS, and The Canadian ALS Research Network (CALS) clinical trials. We’re proud that Alberta is contributing to this national movement through two key initiatives: CAPTURE ALS and the CNDR.

*Above, from left: Leslie Ring Adams (ALS Alberta Executive Director), Dr. Gerald Pfeffer (CAPTURE ALS), Dr. Gordon Jewett (CNDR), Nancy Lyzaniwiski (ALSAB Board Chair), Grace Westbury (CNDR).*

Expanding CAPTURE ALS to 12 research-ready sites across the country will give researchers a clearer picture of ALS biology, while the CNDR will generate real-world data to help accelerate clinical trials and improve how the disease is tracked and understood.

This investment will expand access to research opportunities for Canadians living with ALS, ensuring that people across the country can participate and benefit from these advancements. These projects show what’s possible when researchers, clinicians, and communities work together. This investment has the power to move us closer to new treatments and to bring real hope to families affected by ALS. It is time for the government to act. Together, we can change the future of ALS in Canada.

Through stories of resilience, scientific expertise, and cross-country collaboration, the event captured both the urgency of the ALS crisis and the hope that comes when people unite with a single purpose: ending ALS.

Day 1: Workshops, Voices, and a National Reception

The first day opened with collaborative workshops, followed by an evening reception hosted by the ALS Caucus (a non-partisan, all-party group of MPs and Senators committed to advancing ALS awareness and action).

At the podium, Speaker of the House of Commons, The Honourable Francis Scarpaleggia, alongside MP Peter Fragiskatos (Chair of the ALS Caucus), MP Todd Doherty (Prince George), and MP Marie-Hélène Gaudreau (Laurentides-Labelle), lent their voices to the call for urgency. Their presence underscored how deeply ALS advocacy is needed at Parliament Hill.

Below, from left: Speaker of the House of Commons, The Honourable Francis Scarpaleggia, MP Todd Doherty (Prince George), MP Marie-Hélène Gaudreau (Laurentides-Labelle), Benjamin W. (lived experience with SOD-1 genetics), and Dr. Gordon Jewett (CNDR).

Day 2: Advocacy at the Heart of Parliament

Above from left: Dr. Robert Robitaille (Université de Montréal, ALS researcher), Jason Ritchie (living with ALS and ALS Canada Board Member), Nancy Lyzaniwiski (ALSAB Board Chair), Daniel Knight (Carleton University, ALS researcher), Susan Kennerknecht (ALS Quebec Board Chair), and MP Kerry Diotte (Edmonton Griesbach).

Day two shifted from reception to action. We met with several key government partners to advocate, push for change, and ask for support of this critical investment.

Later, MP Peter Fragiskatos delivered a statement in the House of Commons, amplifying the united voice of the ALS community on the national stage.

A Collective Call: The Time Is Now

Across both days, one theme echoed: collaboration fuels hope. By bringing together MPs across party lines, leading researchers, advocates, and families living with ALS, the Canadian Collaboration to End ALS made it impossible to ignore the urgency of this moment.

ALS remains a terminal diagnosis with no cure. But through unity, advocacy, and science, the possibility of changing the future has never been closer.