Ottawa's Parliament Hill: ALS community urges $50 million over five years to accelerate cure research

ALS Canada led more than 40 people living with amyotrophic lateral sclerosis (ALS), caregivers, clinicians, researchers and advocates back to Parliament Hill in Ottawa on October 27, urging the federal government to invest $50 million over five years in the Canadian Collaboration to Cure ALS. ALS is currently terminal, with life expectancy of just two to five years after diagnosis.

Veterans face higher risk — support must extend beyond service

The community argues that as Canada increases defence spending, supporting people who serve must extend beyond their years of service, since veterans are at higher risk of developing ALS. Retired Royal Canadian Air Force pilot Bob Gibson, who lives with ALS, said: '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. We need to understand why veterans are at higher risk.' ALS Canada CEO Tammy Moore called the $50-million ask modest in the context of broader federal spending, but potentially transformative: better understanding of the disease, stronger national data, more clinical trials in Canada, and earlier access to potential new therapies.

Where the $50 million would go

The collaboration has four priorities: CAPTURE, an open-science platform collecting clinical data, imaging, genomics and biosamples, expanding from four to 12 sites nationwide; the Canadian Neuromuscular Disease Registry (CNDR), following people living with ALS from diagnosis onward with real-world data; the Canadian ALS Research Network (CALS), recruiting and running global clinical trials across Canada, including for people in rural and remote communities; and Access ALS, building capacity for early-phase trials to attract more Phase 1 trials to Canada. Nearly 4,000 Canadians live with ALS and about 1,000 are diagnosed each year.