People living with ALS, caregivers, and bereaved families are encouraged to share their lived experiences to help inform healthcare decision-making and strengthen advocacy efforts
Toronto, ON, March 9, 2026 – Living with amyotrophic lateral sclerosis (ALS) affects every part of life, from finances and caregiving responsibilities to navigating the healthcare system. The ALS Society of Canada (ALS Canada) has launched a national Cost of ALS Study and is asking people living with ALS, caregivers, and recently bereaved caregivers to participate by completing an online survey.
The study will capture and quantify the social and financial impact of ALS in Canada today. The last national cost study was completed in 2014. Since then, the cost of living has increased, healthcare systems have faced ongoing pressures, and families continue to shoulder significant responsibility for care. Updated data is needed to ensure the realities of ALS are clearly understood.
“We cannot understand the full impact of ALS without hearing directly from people living with the disease, caregivers, and bereaved families,” said Ilayda Ulgenalp, Senior Manager of Advocacy and Stakeholder Relations, ALS Canada. “Their experiences are essential to show what support is needed and to improve the quality of life. When those experiences are reflected in strong national data, they help move action forward.”
This work reflects ALS Canada’s commitment to being guided by the lived experience of the ALS community. The study will translate what people affected by ALS already know about their daily lives into evidence that policymakers and health systems can use to inform decisions and improve care.
People living with ALS, caregivers supporting someone living with ALS, and bereaved caregivers who have lost the person they were caring for within the past six months are encouraged to complete the confidential online questionnaire, available now at https://legeropinion.co/2026-Cost-of-ALS
The survey will take approximately 10-20 minutes to complete and is anonymous.
Community participation will be essential to ensuring the study reflects today’s realities and strengthens advocacy efforts in the years ahead.
ALS Canada will host a webinar on Thursday, March 19, at 1 p.m. ET to share more details about the study and answer questions from the community. Register here: https://advocacy.als.ca/page/178965/subscribe/1.
About ALS and the ALS Society of Canada
Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Nearly 4,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis.
The ALS Society of Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity, and advocating for equitable, affordable, and timely access to proven therapies.
Responding to the tremendous need for current and credible ALS knowledge, awareness, and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS.
Founded in 1977, we are a registered charity whose work is powered by generous donors who share our vision of a world free of ALS.
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Join the conversation and connect with the ALS community online. Find ALS Canada on X, Instagram, or like our page on Facebook. Visit als.ca to find out more.
For more information
ALS Society of Canada
media@als.ca
437-703-5402