Funding supports vital access to multi-disciplinary care and community services, benefiting nearly 1,400 Ontarians living with ALS
TORONTO, October 30, 2024 – The ALS Society of Canada (ALS Canada) applauds the Ontario government’s commitment of $13 million over three years in the 2024 Fall Economic Statement to support the Ontario Provincial ALS Program.
This pivotal investment represents a meaningful commitment from the provincial government to address the urgent and evolving needs of people affected by ALS. The program will deliver vital services aligned with the best practice model of care to provide better health outcomes for the 1,400 Ontarians living with ALS and their loved ones, supporting their independence, safety, and dignity while reducing stress on Ontario’s healthcare system by helping prevent unnecessary hospitalizations and emergency visits.
“The physical, emotional, and financial demands of ALS are enormous and only grow as the disease progresses,” says Tammy Moore, CEO of ALS Canada. “This transformative investment by the Ontario government in the Provincial ALS Program will help ensure people with ALS have access to multi-disciplinary care, essential community services and the assistive devices and mobility equipment they need when they need it, it is recognition the ALS community has long sought. We’re proud to have collaborated with the Ontario ALS Clinics and the ALS community to bring forward this program in partnership with the Ontario government.”
In collaboration, ALS Canada, with Simon Kuzyl, Patient Care Manager, and Dr. Lorne Zinman, Director of the ALS Clinic at Sunnybrook Health Sciences Centre, and the regional ALS Clinics in Ontario (Hamilton, Kingston, London, Ottawa, and Toronto) have advocated for this program since 2022. This program reflects the realities faced by people living with ALS and the critical need for accessible, timely care and support.
The program includes an expansion of ALS clinics in Northern Ontario. Until now, people affected by ALS have had to endure long journeys to attend appointments in clinics located in Southern Ontario. This regional strategy ensures that Northern Ontarians living with ALS will receive timely and equitable access to care, regardless of their geographic location.
ALS is a neurodegenerative disease that results in the progressive paralysis of those affected, as the brain loses the ability to communicate with voluntary muscles. People living with ALS often face a rapid loss of function—including mobility, speech, and eventually the ability to eat, swallow, and breathe—and most will need expensive mobility aids, communication devices, and respiratory assistance. There is currently no cure, and approximately 80 per cent of people diagnosed with ALS will pass away within two to five years.
“We are so pleased that the Ontario government has recognized and acted on the urgent needs of families affected by ALS in Ontario. This support will have an immediate and tangible impact on newly diagnosed patients as well as those of us who are further along on our journey,” says Mike Cels, who was diagnosed with ALS in 2017. “Every solution that eases the challenges of managing life with ALS is significant to us.”
ALS Canada will continue collaborating with the Government of Ontario for policies and investments that create lasting change and improve the lives of people affected by ALS today and in the future.
Additional quotes:
“The Ontario Provincial ALS Program is an extraordinary achievement that simply would not have been possible without the synergistic collaboration with ALS Canada. Next to the discovery of novel therapeutics, this represents the most impactful advancement in ALS care in the province. The Ontario ALS Program will set a new standard for comprehensive and coordinated care to optimally support all patients and family members with this devastating disease.” – Dr. Lorne Zinman, Director of the Sunnybrook ALS Clinic
“As someone living with ALS, this funding announcement brings a profound sense of relief and hope. Knowing that the Ontario government has responded to our needs is a powerful reminder that our voices are being heard, and it is an important step toward improving the lives of those affected by ALS across the province. I’m hopeful this commitment will inspire continued progress toward consistent care and resources for everyone facing this disease.” – Steven Gallagher, diagnosed with ALS in 2019
“Caring for my husband David as he lived with ALS felt incredibly overwhelming, but we found strength in the care we received from Sunnybrook ALS Clinic with Dr. Zinman and his outstanding team, along with the support of ALS Canada’s knowledgeable staff and service partners. A standardized program ensures everyone can access the same care, support, and resources. It’s comforting to know that when the journey gets tough, someone who has walked this path before is available, offering reliable guidance and the tools needed to navigate it together.” – Patsy Ellis-Ma, bereaved caregiver to her husband, David Ma
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 that receives no core government funding – our work is powered by generous donors who share our vision of a world free of ALS.
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For more information
ALS Society of Canada
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