ALS Society of Canada is a 4-star rated charity with best practice in financial transparency and above average accountability to donors as seen in the A- results reporting grade. For every dollar donated to this charity, 64 cents go to the cause. This is just outside Ci's reasonable range for overhead spending.

Founded in 1977, ALS Society of Canada (ALS Canada) works to improve the lives of people living with amyotrophic lateral sclerosis (ALS) and create a future without the disease. ALS causes a progressive degeneration of motor neurons in the nervous system, which leads to impaired muscle movement, muscle weakness, impaired speech, and difficulty breathing. Currently, there is no cure for the disease and 80% of people with ALS die within 2-5 years. ALS Canada’s core programs consist of Community Services, National Research, Public Awareness, and Advocacy.

In F2021, ALS Canada allocated 44% of program spending to Community Services. The Community Services program provides equipment and support to people living with ALS. In F2021, the equipment program provided 2,309 pieces of equipment worth $1.4m to Ontarians living with the disease. ALS Canada’s Community Leads also supported 1,240 patients through virtual and in-person visits. Further, the charity held 192 support group meetings that saw 1,536 attendees.

In F2021, ALS Canada allocated 38% of spending to National Research. ALS Canada supported 16 research grants in F2021. This money funded nine new research projects with a focus on discovering a cure for ALS, five trainee research awards with a goal of creating the next generation of ALS researchers and two projects with a focus on increasing access to clinical trials. The charity also hosted the ALS Canada Research Forum, consisting of 2 days of scientific presentations with 319 attendees.

In F2021, ALS Canada allocated 11% of program spending to Advocacy. ALS Canada’s Advocacy program engages officials in the federal and provincial governments to represent people living with ALS. In F2021, ALS Canada held 25 federal meetings and 5 provincial meetings with Canadian politicians to advocate for the needs of ALS patients. Currently, ALS Canada is fighting to reduce Health Canada approval time for new ALS drugs. In F2021, 8,000+ Canadians sent letters to federal party leaders through ALS Canada’s website for expedited access to approved ALS treatments.

ALS Canada allocated 5% of program spending to Public Awareness in F2021. 349 teams and 1,535 individuals participated in the charity's virtual Walk to End ALS and 75 cyclists participated in the charity's Revolution Ride. These events aim to raise awareness for the disease and honour patients who have passed away.

ALS Canada allocated the remaining 3% of program spending to other charitable expenses.

In F2021, ALS Society of Canada reported total donations of $7.4m. Administrative costs are 5% of revenues (excluding investment income) and fundraising costs are 31% of donations. This means overhead costs are 36%. For every dollar donated to the charity, 64 cents go to the cause. This is just outside Ci’s reasonable range for overhead spending.

ALS Society of Canada has funding reserves of $13.9m, of which $1.3m is donor-endowed. Like many charities funding medical research, ALS Canada has multi-year funding commitments. In F2021, ALS Canada's research grant commitments totalled $2.9m, with $1.4m to be granted in 2022. Excluding ALS Canada's donor-endowed funds, the charity’s funding reserves can cover annual program costs and research grants for roughly 2.3 years.

This charity report is an update that has been sent to ALS Society of Canada for review. Comments and edits may be forthcoming.

Updated on July 4, 2022 by Angelina Curwin.