Huntington Society of Canada

151 Frederick Street, Suit 400
Kitchener, ON N2H 2M2
CEO: Robin Markowitz
Board Chair: Brenda Nowakowski

Charitable Reg. #: 11896 5516 RR0001
Sector: Health
Operating Charity

Charity Rating

[Charity Rating: 4/4]

Results Reporting

Grade: B+

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

Financial Transparency

Audited financial statements for current and previous years available on the charity's website [Audited financial statement for most recent year]

Need for Funding

Funding Reserves Program Costs

Spending Breakdown

Cents to the Cause

2016 2017 2018
For a dollar donated, cents funding the cause after fundraising and admin costs, excluding surplus.

Full-time staff #18

Avg. Compensation $69,221

Top 10 Staff Salary Range

$350k + 0
$300k - $350k 0
$250k - $300k 0
$200k - $250k 0
$160k - $200k 1
$120k - $160k 0
$80k - $120k 3
$40k - $80k 6
< $40k 0
Information from most recent CRA Charities Directorate filings for F2018

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 1000 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 HD. 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.

Results and Impact:

Huntington Society of Canada supports clinical trials in Canada which have made promising discoveries in F2018. The drug used reduced huntingtin proteins by 40 to 60 percent over the course of the trail and the study will be proceeding with phases two and three.

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.

Financial Review:

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 is currently under review by Huntington Society of Canada. Comments and edits may be forthcoming.

Updated on June 6, 2019 by Stefan Tetzlaff.


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 (%) 156.3%148.7%154.1%

Summary Financial Statements

All figures in $s
Donations 2,706,9882,817,3022,616,500
Government funding 003,400
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
Funding reserves 4,403,8064,468,6174,601,455

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