Huntington Society of Canada

20 Erb St. W, Suite 801
Waterloo, ON N2L 1T2
CEO: Shelly Redman
Board Chair: Mack Erno

Charitable Reg. #:11896 5516 RR0001


Ci's Star Rating is calculated based on the following independent metrics:

[Charity Rating: 4/5]



Audited financial statements for current and previous years available on the charity’s website.



Grade based on the charity's public reporting of the work it does and the results it achieves.



The demonstrated impact per dollar Ci calculates from available program information.


Charity's cash and investments (funding reserves) relative to how much it spends on programs in most recent year.



For a dollar donated, after overhead costs of fundraising and admin/management (excluding surplus) 64 cents are available for programs.

My anchor


About Huntington Society of Canada:

Founded in 1973, Huntington Society of Canada (HSC) helps people and families affected by Huntington’s disease (HD). HSC’s goal is for a world free from Huntington's disease. One out of every 7,000 Canadians has HD. Every child with a parent with this genetic brain disorder has a 50% chance of inheriting the disease. HD presents in stages, with symptoms progressing from difficulties recalling information to loss of the ability to manage daily living activities. There is no known cure for HD. HSC’s three main programs are Family Services, Research, and Public Awareness and Education.

Family Services: Family Services was HSC's largest program in F2020, accounting for 52% of spending. This program supports individuals, families, and professionals who are directly affected by Huntington's disease. The program works to maximize the quality of life for people living with HD. Some of the services offered are education, short-term counselling and referrals to community resources. Support for caregivers of people with HD and advocacy for HD are also components of this program. In F2020, HSC supported 3,910 individuals and families. As well, 121 support group sessions were held, and a HD Facebook support group was established which now has 300 members. Since 2014, 48 mentees have been matched with mentors under the Mentorship Program.

Research: HSC's Research program accounts for 35% of program spending in F2020. The Research program funds clinical trials and clinical fellowships geared towards reversing, slowing, or preventing the progression of HD. In F2020, HSC provided two young neurologists $60k for their clinical fellowships in the HD research field. The charity also spent $915k on funding research projects, primarily clinical trials which are testing HD drugs.

Public Awareness and Education: HSC’s Public Awareness and Education program accounts for 12% of program spending. This program works to inform the public about HD and advocates for people living with the disease. In F2020, HSC held 153 community awareness events, 23 education forums and had 169 buildings lit up purple/blue for HD Awareness Month.

My anchor

Results and Impact

As one of the HD drug trials receiving funding from Huntington Society of Canada’s Research program, Wave Life Sciences’ PRECISION HD2 clinical trial produced successful (early) results in F2020. Wave’s huntingtin-lowering drug was proven safe at a low dose, and can lower mutant huntingtin in spinal fluid by 12 percent. The PRECISION-HD1 and HD2 trials will thus continue with testing inclusive of higher drug dosages.

Genetic testing is used by some individuals to determine if they have inherited the expanded HD gene from family members with HD or to confirm HD diagnosis. In F2017, HSC successfully advocated for the passing of the Genetic Non-Discrimination Act (GDNA), which protects personal genetic test information from being shared without written consent from the patient. Despite the GDNA being threatened by the Quebec Court of Appeal’s unfavourable ruling in 2018, HSC saw continued advocacy success when the Supreme Court of Canada ruled that the GNDA is constitutional in July 2020.

Charity Intelligence highlights these key results. They may not be a complete representation of HSC's results. Charity Intelligence has not assessed impact on HSC. This shows as n/r, meaning not rated.

My anchor


Huntington Society of Canada had donations and special events revenue of $3.5m in F2020. Administrative costs are 18% of revenues and fundraising costs are 18% of donations. This results in overall overhead spending of 36%. Per dollar donated to the charity, 64 cents go to the cause. This is just outside of Ci’s reasonable range for overhead spending. HSC has funding reserves of $3.6m, $176k of which are donor-endowed funds. Excluding donor-endowed funds, the charity’s reserves can cover program costs for 1.3 years. 

In F2019, Huntington Society of Canada changed its fiscal year end from June to March. The available data for F2019 represents only a nine-month period ending on March 31, 2019. As a result, F2019 figures are not comparable.

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

Updated on May 20, 2021 by Rachel Leteta.

Financial Review

Financial Ratios

Fiscal year ending March
Administrative costs as % of revenues 17.5%17.6%11.6%
Fundraising costs as % of donations 18.0%24.2%15.8%
Total overhead spending 35.6%41.8%27.4%
Program cost coverage (%) 124.9%153.1%150.1%

Summary Financial Statements

All figures in $s
Donations 2,464,6401,511,1052,706,988
Government funding 5,00000
Lotteries (net) 219,38680,221238,525
Special events 1,052,635663,3601,185,638
Investment income (54,182)96,436125,230
Other income 93,21291,49917,365
Total revenues 3,780,6912,442,6214,273,746
Program costs 2,749,4611,904,1072,817,308
Administrative costs 672,232412,418481,521
Fundraising costs 634,601526,573615,598
Total spending 4,056,2942,843,0983,914,427
Cash flow from operations (275,603)(400,477)359,319
Capital spending 67,7917,0970
Funding reserves 3,599,5404,057,4294,403,806

Note: Ci reports lotteries net of expenses. This affected total revenues and expenses by $5k in F2020, $10k in F2019 and $13k in F2018. In F2020, Ci reported government revenue from the charity’s T3010 filings and removed it from donations.

Salary Information

Full-time staff: 16

Avg. compensation: $74,820

Top 10 staff salary range:

$350k +
$300k - $350k
$250k - $300k
$200k - $250k
$160k - $200k
$120k - $160k
$80k - $120k
$40k - $80k
< $40k

Information from most recent CRA Charities Directorate filings for F2020

My anchor

Comments & Contact

Comments added by the Charity:

No comments have been added by the charity.

Charity Contact

This email address is being protected from spambots. You need JavaScript enabled to view it. Tel: 1-800-998-7398


Charity Intelligence researches Canadian charities for donors to be informed and give intelligently. Our website posts free reports on more than 800 Canadian charities, as well as in-depth primers on philanthropic sectors like Canada’s environment, cancer, and homelessness. Today over 500,000 Canadians use our website as a go-to source for information on Canadian charities reading over 1.6 million charity reports. Through rigorous and independent research, Charity Intelligence aims to assist Canada’s dynamic charitable sector in being more transparent, accountable and focused on results.


Be Informed. Give Intelligently. Have Impact


Charitable Registration Number: 80340 7956 RR0001