Today, the ALS Society of Canada (ALS Canada) recognizes the 10th anniversary of the ALS Ice Bucket Challenge making a splash across Canada. The viral social media trend united athletes, celebrities, and politicians, with more than 260,000 Canadians taking part in the challenge, enduring a few seconds of discomfort while raising unprecedented awareness and $17.2 million in Canada for amyotrophic lateral sclerosis (ALS) research, advocacy, information resources, and services.
ALS is a neuromuscular disease that progressively paralyzes people because the brain can no longer communicate with the muscles of the body that we can typically move at will. As a result, people with ALS often face a swift decline in the ability to talk, walk, eat, swallow, and eventually breathe. There is currently no cure for the disease that carries a lifetime risk of 1 in 300 for each of us.
Challenged by friends and inspired by people affected by ALS sharing their stories, generous donations were divided amongst the provincial ALS Societies across Canada, with $11.5 million invested in research, and the remainder allocated to provide services to people living with ALS across the country.
“The ALS Ice Bucket Challenge was a watershed moment for the ALS community, educating people who may have been unfamiliar with the disease and shining a spotlight on how devastating it can be to receive a diagnosis. We are grateful for the generosity of Canadians, which continues to have a lasting impact,” says Tammy Moore, CEO of ALS Canada. “Today, more than 4,000 Canadians are living with ALS, and while our collective efforts have made great strides, there is still much work to be done. We remain committed to advancing research and improving the quality of life for people affected by ALS.”
The significant investment in research back in 2014 was further amplified by a partnership with Brain Canada, which matched the funding of the ALS Canada Research Program. To date, this collaboration has supported 50 research grants in laboratories and institutions across Canada. These projects have advanced the understanding of ALS, including its causes, symptoms, and treatments, and have established a strong foundation for future breakthroughs in ALS research and care.
“ALS had never received recognition or understanding like other, more common diseases. The Ice Bucket Challenge changed that, providing critical funding needed to make progress in our understanding and treatment of ALS,” says Dr. David Taylor, Vice-President of Research and Strategic Partnerships at ALS Canada. “Advancements over the last decade are in part thanks to the hundreds of thousands of Canadians who took on the challenge and donated. We’re honoured to work alongside the ALS community and dedicated researchers as we continue to make progress toward a world free of ALS.”
Funds raised also supported critical national projects, such as developing the first-ever Canadian Best Practice Recommendations for the Management of Amyotrophic Lateral Sclerosis in 2020 in collaboration with clinicians. These recommendations ensure that individuals with ALS receive specialized multidisciplinary care and address crucial issues such as the timeliness of care, disease-modifying therapies, medical assistance in dying (MAiD), and caregiver support.
Among the research initiatives made possible by these funds is CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS, which continues to recruit people living with ALS and healthy participants at multiple institutions across Canada. This initiative aims to expand and provide open science data to collaborate with global initiatives and work to fast-track our understanding of disease heterogeneity, discover new biomarkers and accelerate toward personalized medicine.
ALS Canada is calling on Canadians to fill their buckets once again and help continue the momentum. To support Canadians living with ALS and invest in Canadian ALS research, donate at als.ca. Take the ALS Ice Bucket Challenge today, 10 years later, and tag @ALSCanada on social media. More information on the projects funded through the Ice Bucket Challenge can also be found at icebucketchallenge.ca.