ALS Society of Canada is a 3-star charity. It is financially transparent and has an above-average results reporting score. However, it has high overhead spending according to Ci’s reasonable range.  

Founded in 1977, ALS Society of Canada (ALS Canada) works to improve the lives of people living with amyotrophic lateral sclerosis (ALS). It also funds research to create a future without the disease. ALS causes motor neurons to break down, which leads to muscle weakness, impaired speech, and difficulty breathing. Currently, there is no cure for the disease and 80% of people with ALS die within five years of diagnosis. 

ALS Canada has four main programs: Community Service, National Research, Advocacy, and Public Awareness.  

In F2022, ALS Canada allocated 51% of program spending ($2.9m) to Community Services. This program provides equipment and support to people living with ALS. In F2022, the charity distributed over 2,800 pieces of equipment worth $1.6m. ALS Canada held 140 virtual support groups. In F2022, ALS Canada’s Community Leads supported 1,289 people living with ALS, their family members, and caregivers. Leads helped people navigate healthcare systems, access community resources, and find support groups 

In F2022, ALS Canada allocated 29% of spending ($1.6m) to National Research. The charity also leveraged this funding, in partnership with Brain Canada, for an additional $1.1m invested in research. Through the ALS Canada Research Program, the charity funds peer-reviewed research grants and fosters collaboration. In F2022, the charity funded 14 research grants – nine Discovery Grants, four Trainee Awards, and one Career Transition Award. ALS Canada invests in new areas of research that aim to have high impact. In F2022, the charity also hosted the ALS Canada Research Forum, which attracted 270 participants.  

In F2022, ALS Canada allocated 11% of program spending ($603k) to Advocacy. The charity held 30 meetings with 45 government officials in F2022. ALS Canada also led campaigns to increase access to new ALS therapies for patients. The charity submitted four proposals to the government about these therapies. It had over 450 people take part in an e-advocacy campaign about equitable access to treatment. 

ALS Canada allocated 5% of program spending ($291k) to Public Awareness in F2022. This year, the charity was able to host its Walk to End ALS in person again. The walk included 368 teams and 2,500+ individuals within Ontario. ALS Canada also reached 300,000 people with its June ALS Awareness Month Campaign about ALS clinical trials in Canada during F2022.  

ALS Canada allocated the remaining 4% of program spending ($247k) to other charitable expenses. 

In F2022, ALS Society of Canada reported total donations of $8.3m. Administrative costs are 5% of revenues (excluding investment income) and fundraising costs are 34% of donations. This means overhead costs are 39%. For every dollar donated to the charity, 61 cents go to the cause. This is outside Ci’s reasonable range for overhead spending, and the charity has been outside the reasonable range for the past three years. 

ALS Society of Canada has reserve funds of $11.9m, of which $1.3m is donor endowed. Like many charities funding medical research, ALS Canada has multi-year funding commitments. In F2022, ALS Canada's research grant commitments totaled $2.6m, with $1.7m to be granted in 2023. Excluding ALS Canada's donor-endowed funds, the charity’s funding reserves can cover annual program costs and research grants for over one year and ten months. 

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 August 19, 2023 by Clive Stevens.