On October 1 and 2, 2025, Canada’s ALS community came together in Ottawa with a powerful purpose: to advocate for a federal investment of $50 million over five years in the Canadian Collaboration to Cure ALS.

Organized by ALS Canada in collaboration with stakeholders and ALS organizations from across Canada, The Canadian ALS Community’s Federal Advocacy Day on Parliament Hill (or “Hill Day”) brought together a delegation of 47 people affected by ALS from across the country, united in advocacy.

The delegation included:

  • 12 people living with ALS
  • 10 caregivers
  • 6 researchers
  • 6 clinicians
  • 15 representatives from Canadian ALS organizations including ALS Action Canada, ALS Society of Alberta, ALS Society of British Columbia, ALS Society of Canada and ALS Society of Quebec, and with support from ALS Society of Manitoba, ALS Society of Newfoundland and Labrador, and ALS Society of Saskatchewan.

Ultimately, the ALS Federal Advocacy Day with ALS Canada was one of the most fulfilling experiences I’ve ever had. Not only did I feel that we were strong in our message, but the representation from all areas of ALS - patients, caregivers, family members, neurologists, and researchers - as well as from across Canada, made for an unforgettable experience that will undoubtedly prove successful one day.

Daniel Knight • Bereaved caregiver, researcher and 2024 recipient of the ALS Canada-Brain Canada Discovery Grant

A United Call for Action

The advocacy ask at the heart of the Hill Day – the Canadian Collaboration to Cure ALS – emerged from the National ALS Research Summit held on June 12, 2025, where people living with ALS, caregivers, researchers, clinicians, and ALS organizations from across Canada across the reached a clear consensus: Canada must act now with a unified, coordinated research strategy.

The result is the Canadian Collaboration to Cure ALS: a 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.

Participating in Hill Day was an incredibly meaningful experience, I was inspired by all members of the ALS community, people living the disease, their families, clinicians, and fellow researchers all coming together with one shared purpose. I’m bringing that inspiration back to the lab with me every day that each experiment, each late night, and each discovery, is a part of a much larger effort to make a difference in people’s lives

Alicia Dubinski • PhD student at Dr. Christine Vande Velde Lab at Université de Montreal

The ALS Community is calling on the government to invest $50 million over five years in the Canadian Collaboration to Cure ALS, so that no Canadian is left behind:

  • $35 million to expand CAPTURE ALS: An open-science platform collecting data to unlock the complex biology of ALS.
  • $7.5 million to scale the Canadian Neuromuscular Disease Registry (CNDR): A national registry that tracks disease progression to advance ALS care and research through real-world data.
  • $7.5 million to expand the Canadian ALS Research Network (CALS): A network of clinicians specializing in ALS research and clinical care to improve equitable access to clinical trials across Canada.

Why a Federal Hill Day Matters

Hill Days bring together advocates united by a common cause to Parliament Hill to engage Parliamentarians face-to-face, offering decision-makers a unique opportunity to hear directly from the ALS community about their lived experiences and why now is the moment for bold federal leadership in ALS research.

It is also an opportunity to show unity and demonstrate that the Canadian ALS community is aligned around one goal: advocating for the Canadian Collaboration to Cure ALS to ensure Canadians living with ALS can contribute to, and benefit from research and clinical trials closer to home.

Our unified voice was incredibly powerful, and our message and ask were very well received by government officials. Investing in Canadian ALS research not only brings hope to people living with ALS, but also positions Canada as a global leader in ALS innovation during this critical time.

Louis Del Re • Diagnosed with ALS in 2023 and ALS Action Canada Board Member

Building Momentum

The Hill Day began with virtual training and then an in-person half-day training session, marking the first time many ALS community members and representatives from ALS organizations from across the country came together in person.

They heard powerful opening remarks from Norman MacIsaac (ALS Canada Community Ambassador) and Russell Williams (Retired Interim CEO and VP Mission for Diabetes Canada, Former President of Innovative Medicines Canada; former Member of the Québec National Assembly).

Delegates were organized into groups each composed to reflect a mix of voices and experiences—including people living with ALS, caregivers, researchers, clinicians, and representatives from ALS organizations. During the training session, delegates deepened their understanding of the Canadian Collaboration to Cure ALS, reviewed key messages, participated in mock meetings, and built shared confidence in presenting a united message to Parliamentarians.

This was my first trip to Parliament Hill in an advocacy capacity and not only was the experience empowering, I walked away from meetings with the feeling of being heard and a palpable sense of hope.

Jason Ritchie • Diagnosed with ALS in 2024 and ALS Canada Board Member

On the Hill

The training was followed by the reception on Parliament Hill, hosted by the Speaker of the House, the Hon. Francis Scarpaleggia – a rare privilege requiring endorsement from all three recognized parties, demonstrating the cross-party support of the ALS Community by the federal government.

The Speaker of the House, the Hon. Francis Scarpaleggia (Lac-Saint-Louis), opened the reception by welcoming the ALS community to Parliament Hill, followed by ALS Caucus Co-Chairs MP Peter Fragiskatos (London Centre) and MP Marie-Hélène Gaudreau (Laurentides—Labelle), along with MP Todd Doherty (Cariboo—Prince George), who expressed their support for the ALS community.

The room then heard powerful remarks from several members of the ALS community, including:

  • Tammy Moore, CEO of ALS Canada, who spoke about the Canadian Collaboration to Cure ALS and its transformative potential for the ALS community.
  • Ben Webb, age 17, brought forward his perspective as a young person who has witnessed generations of his family affected by SOD-1 ALS, shared how the recent Health Canada approval of Qalsody has given his family hope and emphasized the urgent need for research investments to extend that hope to everyone living with ALS.
  • Dr. Gord Jewett, neuromuscular neurologist at the University of Calgary, highlighted the importance of made-in-Canada research solutions that not only advance care and research but also create jobs and position Canada as a global leader in ALS innovation.
  • Dr. Angela Genge, Director of the ALS Clinic at The Neuro, Montreal Neurological Institute-Hospital, spoke about her global leadership in ALS clinical trials and the critical moment Canada has to step up and provide hope for people living with ALS.

The reception had strong all-party attendance, including the Minister of Health, the Hon. Marjorie Michel (Papineau), Dr. Supriya Sharma (Chief Medical Advisor at Health Canada), the Hon. Judy Sgro (Humber River–Black Creek), and MP Elizabeth May (Saanich—Gulf Islands).

Adjacent to the reception, a video booth where Parliamentarians and the ALS community filmed short messages of support for the Canadian Collaboration to Cure ALS. View the recap video on our social media.

Throughout the day on October 2, delegates met with Members of Parliament, Senators, and Bureaucrats, to call on their support for the Canadian Collaboration to Cure ALS and share how this bold national research strategy will transform Canada into a global leader in ALS research, ensuring no Canadian is left behind. Decision-makers were receptive and expressed appreciation for the unified and solutions-oriented approach presented by the ALS community.

We feel honoured to have been a part of such a dedicated and determined group of people advocating and working together to convince the government of Canada to step up and invest in finding a cure for ALS. It truly gives us hope.

Robert Gibson • Diagnosed with ALS in 2024 and Charmaine Gibson, caregiver

Meetings

Across all delegate groups, the ALS community had 22 formal meetings with MPs, Senators, and government officials.

  • Rodrigo Aranciba, Senior Director at Innovation, Science and Economic Development Canada
  • MP Ben Carr (Winnipeg South Centre)
  • MP Adam Chambers (Simcoe North)
  • MP Maggie Chi (Don Valley North), Parliamentary Secretary to the Minister of Health
  • MP Michael Chong (Wellington—Halton Hills)
  • Dr. Patricia Conrod, Scientific Director of the CIHR Institute of Neurosciences, Mental Health and Addiction
  • MP Kerry Diotte (Edmonton Griesbach)
  • MP Peter Fragiskatos (London Centre)
  • MP Tamara Jansen (Cloverdale—Langley City)
  • MP Tom Kmiec (Calgary Shepard)
  • MP Marie-France Lalonde (Orléans)
  • Chardé Morgan, Project Lead, Canadian Institute for Health Research
  • Anne-Marie Parent, Manager, Office of the President and CEO, Canadian Institute for Health Research
  • MP Zoe Royer (Port Moody—Coquitlam)
  • Dr. Jane Rylett, Scientific Director of the CIHR Institute of Aging
  • Bryn Savage, Policy Advisor, Minister of Health’s office
  • Dr. Supriya Sharma, Chief Medical Advisor, Health Canada
  • MP Doug Shipley (Barrie—Springwater—Oro-Medonte)
  • MP Fraser Tolmie (Moose Jaw—Lake Centre—Lanigan)
  • MP Anita Vandenbeld (Ottawa West—Nepean)
  • Senator David Wells
  • Sandenga Yeba, Deputy Chief of Staff and Director of Policy, Minister of Health’s office

Looking Ahead

The Federal Advocacy Day was an important step in advancing support for the Canadian Collaboration to Cure ALS. It marked a meaningful opportunity for the ALS community from across the country to come together to raise awareness, elevate the voices of the ALS community, and strengthen relationships with federal decision-makers. We look forward to building on this momentum through continued engagement, collaboration, and advocacy to drive progress for the Canadian Collaboration to Cure ALS.

Thank you to all the incredible advocates and ALS organization who attended the Canadian ALS Community’s Federal Advocacy Day on Parliament Hill, we look forward to continue advocating together as a united community for the Canadian Collaboration to Cure ALS. This is the time for bold federal leadership and investment to ensure every Canadian affected by ALS has the opportunity to contribute to and benefit from research, offering hope for a world free of ALS.

Tammy Moore • CEO of ALS Canada

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