ALS Canada’s work is empowered by community. Discover how, in 2023, our work within the ALS community helped people affected by the disease feel empowered and informed to make decisions and engage in advocacy efforts.

Empowering advocacy with the ALS Canada Canadian ALS Learning Institute

The landscape of ALS research is ever-changing as researchers continue to make developments. However, research is just half of the journey – ensuring effective treatments are understood and accessible is critical to supporting Canadians living with ALS, and nobody understands this better than those affected by the disease right now.

ALS Canada seeks to empower Canadians affected by ALS with the right knowledge, tools, and support to navigate its current realities and advocate effectively for change. That’s why the Canadian ALS Learning Institute (CALI) was created – a small-group learning experience for people affected by the disease to better understand the Canadian ALS landscape, clinical research, therapy development, and how to advocate effectively.

Jennifer Hutton and her husband, Don Hutton

Since the CALI launched in 2021, graduates of the program who become ALS Canada Community Ambassadors, have shown power in their advocacy efforts, actively putting their learnings into action. Jennifer Hutton, graduate of the 2022 CALI cohort, jumped into advocacy straight away following her husband’s ALS diagnosis in 2021. “I had the power and passion to advocate but I felt that I lacked the knowledge needed to fully put myself out there,” said Hutton, leading her to reach out to ALS Canada and discovering the CALI.

“The CALI outlined the current state of ALS from all avenues including gaps in healthcare, research, drug development and support. I’ve been able to use that knowledge when speaking with and advocating on a much broader scale than just my personal story.” Since graduating from the CALI and becoming an ALS Canada Community Ambassador, Jennifer has been able to engage various government officials in her home province, including Nova Scotia’s Premier and provincial health minister, as well as create a relationship and consistent dialogue with the Ministry of Health and Wellness support staff.

“[Participating in the CALI] you gain an entire community of people that will help support you and mentor you through your journey in not only advocacy, but ALS in general,” says Hutton. As she continues forward on her own advocacy journey, backed by the CALI community, she leaves some words of advice for anyone affected by ALS interested in beginning theirs, “Be patient. It’s not easy, but it’s worth it. Lean on the community for support and keep going.”

Learn more about our work in 2023 by exploring our latest annual report.

Posted in: Advocacy