ALS Canada urges greater federal investment in disease research
It would fund initiative aimed at expanding trial access, advancing treatments
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- ALS Canada is urging greater federal investment to accelerate research, expand clinical trial access, and advance new therapies.
- Advocates visited Paliament Hill to seek CAD$50 million in funding for the Canadian Collaboration to Cure ALS.
- The collboration brings together four initiatives designed to address different barriers to ALS research.
The ALS Society of Canada is calling on the federal government to invest CAD$50 million over five years in a national initiative aimed at accelerating research, expanding clinical trial access, and advancing the search for treatments for amyotrophic lateral sclerosis (ALS).
More than 40 people living with ALS, caregivers, clinicians, researchers, and advocates returned to Parliament Hill last week to press for funding for the Canadian Collaboration to Cure ALS. About a year ago, the Canadian ALS community advocated for more government funding to accelerate progress toward a cure.
“A $50-million [about $36 million U.S.] investment over five years is modest in the context of broader federal spending, but it could transform what is possible in ALS research, helping us better understand the disease, build stronger national data, bring more clinical trials to Canada, and give people living with ALS earlier access to potential new therapies,” Tammy Moore, CEO of ALS Canada, said in an organization press release.
Moore added that “there is simply no time to waste for someone who is living with ALS. We have incredible researchers across Canada ready to accelerate this work, but they need sustainable federal funding behind them.”
Four-part strategy targets biomarkers, early-stage trials
ALS is a progressive neurodegenerative disease marked by worsening muscle weakness that affects everyday functions such as the ability to walk, speak, eat, and breathe. There is no cure for ALS, and available treatments have only limited effects on disease progression and survival.
ALS Canada’s plea comes on the heels of increased defense spending by the Canadian government. Because the risk of ALS is elevated among military veterans, support for those who serve should extend beyond their years of service and include research into diseases they are more likely to develop, according to the organization.
“When you serve your country, you accept that there are risks, but I never imagined ALS would be one of the challenges I would face years later,” said Bob Gibson, a retired Royal Canadian Air Force pilot living with ALS. “We need to understand why veterans are at higher risk of developing this disease. I want those answers for my family, for the people serving today, and for future generations. We have an opportunity to invest in the research that can get us there.”
The Canadian Collaboration to Cure ALS brings together four initiatives designed to address different barriers to ALS research, from understanding the disease to testing potential treatments.
CAPTURE ALS is a collaborative research platform that combines clinical information, imaging, genetic data, and biological samples to investigate why ALS affects people differently. Funding would support its expansion from four to 12 Canadian sites, allowing researchers to collect data from more people and identify biomarkers that could help track the disease and guide future treatments.
When you serve your country, you accept that there are risks, but I never imagined ALS would be one of the challenges I would face years later.
The Canadian Neuromuscular Disease Registry collects information about people living with ALS from diagnosis. Expanding the registry would help ensure that all people with ALS in Canada can enroll, helping researchers identify patterns in disease progression and care. It would also inform treatment decisions, health policies, and clinical trial planning.
The Canadian ALS Research Network helps bring international clinical trials to Canadian sites. Additional funding would help expand the network of participating research sites, including sites in rural and remote communities, giving more people with ALS the opportunity to access experimental treatments.
Finally, Access ALS focuses on strengthening Canada’s ability to conduct early-stage, Phase 1 clinical trials, which are an essential first step to testing experimental treatments in people. Funding would help build the capacity to run these studies and attract more potential therapies to Canada, creating additional opportunities for people with ALS to participate in research.
Overall, this coordinated strategy aims to build a unified approach to ALS research in Canada by improving data collection, strengthening research collaborations, and expanding access to experimental therapies.
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