Every voice, meeting and message came together to drive meaningful progress. ALS Canada, alongside the Clinics, and the ALS community, has spent the past three years advancing advocacy efforts by sharing personal stories, engaging policymakers and pushing for action. United in purpose, we’ve made a tremendous impact.
How the ALS community secured funding for the Ontario Provincial ALS Program
In October 2024, the Ontario government announced over $13 million in funding over three years to support the Ontario Provincial ALS Program. This funding is a crucial step forward in improving access to care and support for people living with ALS and their families.
This milestone didn’t happen overnight. It was the result of years of dedicated collaboration and persistent advocacy from people living with ALS, caregivers, and clinicians who shared their stories and pushed for change.
The funding was not the outcome of a single conversation, but rather a sustained effort to highlight the real challenges that people affected by ALS face. By focusing on gaps in access to timely care, essential equipment, and support, it demonstrated how these issues affect the quality of life, health outcomes, safety, and dignity for people living with ALS and their caregivers, while creating additional pressure on the healthcare system.
The Ontario Provincial ALS Program builds on existing care structures, enhancing access to multi-disciplinary clinics and critical equipment. It also strengthens community services, including programs provided by ALS Canada, and a plan to establish a new clinic in Northern Ontario, bringing essential care closer to those who need it most.
The path to success
2022
Dr. Lorne Zinman and Simon Kuzyl of Sunnybrook ALS Clinic approached ALS Canada to discuss growing challenges with clinic resources. Together, we began shaping a proposal to address the urgent and evolving needs of people living with ALS across Ontario.
2023
A collaborative effort between ALS Canada, Sunnybrook and the other four multidisciplinary ALS clinics in the province helped shape the Ontario Provincial ALS Program proposal, which was submitted to the Ministry of Health and led to a meeting with the Minister of Health, Hon. Sylvia Jones.
Early 2024
ALS Canada and members of the ALS community met with senior government officials, continuing to share the proposal and building awareness and support within the government.
February 2024
ALS Canada hosted an Advocacy Day of Action at Queen’s Park. People living with ALS, caregivers, bereaved caregivers, and clinicians met with more than 40 MPPs and staff to advocate for funding in the 2024 Budget.
July to September 2024
The ALS community continued to mobilize. Supporters wrote letters, shared personal stories with elected officials and the media, and took part in collective advocacy that built momentum.
October 2024
On October 29, the Ontario government announced over $13 million in the 2024 Fall Economic Statement to fund the Ontario Provincial ALS Program.
Mobilizing action
This success was made possible through sustained community advocacy over many months:
- 25 meetings were held with key government decision-makers with representatives from ALS Canada, Sunnybrook Clinic, London Health Sciences, and ALS community members
- Community members participated in six pre-budget public hearings held across Ontario
- People living with ALS and caregivers directly engaged with their elected officials to share their stories
- ALS Canada’s advocacy toolkit, designed to support community-led action, was downloaded more than 120 times
These efforts gave urgency and visibility to the challenges faced by people living with ALS and showed the government what meaningful change could look like.
Looking ahead
This funding marks a significant step forward for the ALS community in Ontario, made possible by sustained advocacy, collaboration, and determination. With the potential to set a national benchmark, it is a powerful example of what is possible when people unite for change. Thank you to everyone who contributed; your continued support will help shape a future where all Canadians affected by ALS have access to the care and support they need.