Huntington Society of Canada

151 Frederick Street, Suit 400
Kitchener, ON N2H 2M2
CEO: Bev Heim-Myers
Board Chair: Susan Wright

Charitable Reg. #:11896 5516 RR0001


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

[Charity Rating: 5/5]



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) 73 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 that is free from Huntington Disease. HD is an inherited brain disorder that affects one out of every 1,000 Canadians. Every child with a parent who has HD has a 50% chance of inheriting the disease themselves. HD has multiple stages with symptoms progressing from decreased ability to recall information to losing the ability to manage the activities of daily living. HSC runs three main programs based around family services, research, and public awareness and education.

HSC’s family services program supports individuals, families, and professionals who are dealing with the progression of Huntington Disease The program works to maximize the quality of life for people living with HD and supports over 15,000 people annually. Some of the services provided are information and education, referral to community resources, and individual advocacy. The charity has 14 resource centers with 24 support groups that meet on a regular basis.

The charity’s research program funds projects designed to reverse, slow, or prevent the progression of HD. In F2018, the charity spent over $1m funding research projects. HSC awarded two $150k grants to fund HD research, one of which resulted in the development of a detailed 3D model of the Huntington protein.

HSC’s public awareness and education program informs people about HD and advocates for people living with the disease. In F2018, HSC had three million views on social media and sold over 20 thousand amaryllis flowers which are the official flower of HSC.

My anchor

Results and Impact

The Huntington Society of Canada supports promising HD research and has laid the foundation for clinical trials to take place in Canada. In F2018, Ionis Pharmaceuticals announced the results of their Phase I/IIa trial. The study demonstrated that the drug was initially safe and that higher doses reduced the huntingtin protein by 40 to 60 percent in the cerebral spinal fluid and will be proceeding to Phase III. 

HSC’s advocating was successful with the passing of the Genetic Non-Discrimination Act on May 4, 2017 which protects one’s genetic test information from being shared without written consent from the patients.

My anchor


Huntington Society of Canada is a medium-sized charity with donations and special events revenue of $4.1m in F2018. Administrative costs are 12% of revenues and fundraising costs are 15% of donations. Per dollar donated to the charity, $0.73 go to the cause. This is within Ci’s reasonable range for overhead spending. HSC’s funding reserves of $4.4m include of which $1.9m are donor-endowed funds. Excluding donor-endowed funds, the charity’s reserves can cover program costs for 5 months.

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

Updated on July 11, 2019 by Stefan Tetzlaff.

Financial Review

Financial Ratios

Fiscal year ending June
Administrative costs as % of revenues 11.6%10.6%10.3%
Fundraising costs as % of donations 15.2%16.6%18.1%
Program cost coverage (%) 92.5%89.0%94.0%

Summary Financial Statements

All figures in $s
Donations 2,706,9882,817,3022,616,500
Special events 1,436,7241,270,4671,573,314
Investment income 125,230208,58944,885
Other income 17,36579,04215,943
Total revenues 4,286,3074,375,4004,254,042
Program costs 2,817,3083,005,1082,986,118
Administrative costs 481,521443,381432,148
Fundraising costs 628,159676,789758,808
Cash flow from operations 359,319250,12276,968
Capital spending 000
Funding reserves 4,403,8064,468,6174,601,455

Salary Information

Full-time staff: 18

Avg. Compensation: $69,221

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 F2018

My anchor

Comments & Contact

Comments added by the Charity:

No comments have been added by charity

Charity Contact

This email address is being protected from spambots. You need JavaScript enabled to view it.