Huntington Society of Canada
STAR RATINGCi's Star Rating is calculated based on the following independent metrics: |
✔+
FINANCIAL TRANSPARENCY
Audited financial statements for current and previous years available on the charity’s website.
A-
RESULTS REPORTING
Grade based on the charity's public reporting of the work it does and the results it achieves.
n/r
DEMONSTRATED IMPACT
The demonstrated impact per dollar Ci calculates from available program information.
NEED FOR FUNDING
Charity's cash and investments (funding reserves) relative to how much it spends on programs in most recent year.
64%
CENTS TO THE CAUSE
For a dollar donated, after overhead costs of fundraising and admin/management (excluding surplus) 64 cents are available for programs.
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OVERVIEW
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.
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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.
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Finances
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
Fiscal year ending March
|
2020 | 2019 | 2018 |
|---|---|---|---|
| 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 StatementsAll figures in $s |
2020 | 2019 | 2018 |
|---|---|---|---|
| Donations | 2,464,640 | 1,511,105 | 2,706,988 |
| Government funding | 5,000 | 0 | 0 |
| Lotteries (net) | 219,386 | 80,221 | 238,525 |
| Special events | 1,052,635 | 663,360 | 1,185,638 |
| Investment income | (54,182) | 96,436 | 125,230 |
| Other income | 93,212 | 91,499 | 17,365 |
| Total revenues | 3,780,691 | 2,442,621 | 4,273,746 |
| Program costs | 2,749,461 | 1,904,107 | 2,817,308 |
| Administrative costs | 672,232 | 412,418 | 481,521 |
| Fundraising costs | 634,601 | 526,573 | 615,598 |
| Total spending | 4,056,294 | 2,843,098 | 3,914,427 |
| Cash flow from operations | (275,603) | (400,477) | 359,319 |
| Capital spending | 67,791 | 7,097 | 0 |
| Funding reserves | 3,599,540 | 4,057,429 | 4,403,806 |
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
$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 F2020
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Comments & Contact
Comments added by the Charity:
Charity Contact
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