Loeys-Dietz Syndrome Foundation 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.
D+
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.
-3400%
CENTS TO THE CAUSE
For a dollar donated, after overhead costs of fundraising and admin/management (excluding surplus) -3400 cents are available for programs.
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OVERVIEW
About Loeys-Dietz Syndrome Foundation Canada:
Loeys-Dietz Syndrome Foundation Canada is a 1-star rated charity with poor results reporting. The charity has a complicated and unique financial structure. In 2022, it spent more on administrative and fundraising costs than programs. Before you give, read Charity Intelligence's report.
Founded in 2011, Loeys-Dietz Syndrome Foundation Canada is (LDSF Canada) aims to support people affected by Loeys-Dietz Syndrome (a connective tissue disorder). Its activities are closely linked with its American counterpart: LDSF USA. The charity has three main programs: Education, Research, and Patient Support. It does not disclose how much it spent on each program in 2022.
LDSF Canada gave $58,606 in four grants to researchers in 2022. It funded two research projects at the University of Toronto, one at Yale, and one at the University of Calgary. During the year, LDSF Canada also established a Medical and Scientific Advisory Board.
As part of its Education and Awareness program, LDSF Canada launched a new website, began sending monthly newsletters, and hosted a Facebook live series.
Through its Support program, LDSF Canada launched a patient support helpline. It also created a reference centre with over 400 resources for patients and families. It helped 25 patients and their families access resources related to Loeys-Dietz Syndrome.
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Results and Impact
Charity Intelligence could not find any quantified outcomes on Loeys-Dietz Syndrome Foundation Canada's website. This may not be a complete representation of Loeys-Dietz Syndrome Foundation Canada's results and impact.
Loeys-Dietz Syndrome Foundation Canada is not yet rated for impact (n/r). This lack of impact rating does not affect Loeys-Dietz Syndrome Foundation Canada's overall star rating.
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Finances
Loeys-Dietz’s financial statements are very complicated. Standard metrics, like how much of your giving goes to the cause, are not relevant at this time. This is because Loeys-Dietz’s fundraising strategy is to sign up life insurance policies. These life insurance policies have incredibly high upfront costs and maintenance fees. Yet this strategy could pay off in the long run.
Loeys-Dietz is aggressively acquiring life insurance policies. When people sign over a life insurance policy, they get the tax receipt immediately on the face value. A $1 million life insurance policy is a $1 million tax donation. On these life insurance policies, Loeys-Dietz pays high upfront signing costs and the insurance policies’ annual premiums. When the donor dies, only then does Loeys-Dietz receive the $1 million.
These transactions involve a related party (Pentor Charity Services?). In 2022, LDSF Canada paid this related party $1.265 million to acquire life insurance policies (Financial Note 9). In addition to the acquisition costs, Loeys-Dietz Foundation Canada pays the annual life insurance premiums on these policies. With the payments to Pentor Charity Services and the cost of the life insurance premiums, in 2022 LDSF Canada paid $3.444 million in “fundraising” costs to acquire and keep in force these life insurance policies. These payment far exceed LDSF Canada's donations. In 2022 LDSF Canada only received $110,000 in donations.
To finance this wide gap between donations and insurance policy costs, LDSF Canada borrows from a related party, (Pentor Finance, the parent company of Pentor Charity Services?). At the end of 2022 LDSF Canada owes this related party $12.3 million, an increase of $4.0 million from the $8.3 million owed at the end of 2021.
The related party charges Loeys-Dietz Foundation Canada high interest rates of 12% on the loan. The interest costs are beyond what LDSF Canada can pay at this time. The annual interest costs are added to the loan. The loan is payable at the earlier of the death of the life insured or five years (Financial note 8). With the debt due in five years, this creates financial risk. How is a charity that receives $110,000 in donations able to repay a $12.3 million debt in five years? Loeys-Dietz Foundation Canada states that the life insurance policies are on donors “that have a reduced life expectancy.”
With debts of $12.3 million, and cash and investments of $2.6 million, LDSF Canada has negative reserve funds of $9.8 million. The acquisition of new life insurance policies and the high fundraising costs to acquire these policies increased it debt by $5.2 million. Offsetting these debts, the donated life insurance policies have a face value of $55.5 million, an increase of $7.4 million from $48.1 million at the end of 2021 (Financial Note 4).
This life insurance strategy is apparently to carry out LDSF Canada's purpose to fund research on the cause, treatment, and potential cure of Loeys-Dietz Syndrome. In 2022, Loeys-Dietz Foundatoin Canada granted $58,606. Its tax filing with the CRA reports that it granted $17k to Yale Universtity, $16k to SickKids Charitable Giving Fund, $12k to University Health Network, and $12k to Universtiy of Calgary.
This charity report is an update that has been sent to Loeys-Dietz Foundation Canada for review. Changes and edits may be forthcoming.
Updated on February 14, 2023 by Kate Bahen and Emily Downing
Financial Review
Fiscal year ending December
|
2022 | 2021 | 2020 |
---|---|---|---|
Fundraising & admin costs as % of revenues | 3,500.0% | 158.4% | 342.3% |
Total overhead spending | 3,500.0% | 158.4% | 342.3% |
Program cost coverage (%) | (2,992.5%) | (2,157.0%) | (22,486.8%) |
Summary Financial StatementsAll figures in $s |
2022 | 2021 | 2020 |
---|---|---|---|
Donations | 109,861 | 2,293,365 | 647,094 |
Investment income | 10,598 | 0 | 0 |
Other income | 0 | 0 | 0 |
Total revenues | 120,459 | 2,293,365 | 647,094 |
Program costs | 265,601 | 211,376 | 8,415 |
Grants | 58,606 | 0 | 2,500 |
Fundraising & administrative costs | 3,845,154 | 3,632,727 | 2,215,034 |
Other costs | 1,136,798 | 629,891 | 233,822 |
Total spending | 5,306,159 | 4,473,994 | 2,459,771 |
Cash flow from operations | (5,185,700) | (2,180,629) | (1,812,677) |
Capital spending | 3,044 | 15,108 | 0 |
Funding reserves | (9,701,934) | (4,559,357) | (2,454,430) |
Note: Ci reported program costs from the charity's T3010 filing with the CRA. Ci adjusted total grants in 2022 by contributions payable, affecting total grants by ($57k) in 2022. Ci reported combined administrative and fundraising costs by deducting total program costs, grants, amortization, and interest on loan payable from the charity's total expenses. Ci reported interest on loan payable in other costs.
Salary Information
$350k + |
0 |
$300k - $350k |
0 |
$250k - $300k |
0 |
$200k - $250k |
0 |
$160k - $200k |
0 |
$120k - $160k |
1 |
$80k - $120k |
1 |
$40k - $80k |
2 |
< $40k |
0 |
Information from most recent CRA Charities Directorate filings for F2022
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Comments & Contact
Comments added by the Charity:
Comment added by Loeys-Dietz February 12, 2025:
" At Loeys-Dietz Syndrome Foundation Canada (LDSFC), we are pioneering a bold and forward-thinking approach to charitable financing. Unlike traditional charities, our model is based on long-term sustainability rather than short-term cash flow. This vision was born, in 2018, from the mind of our co-founder, Joseph Galli, a venture capitalist at heart, who sought to ensure the foundation’s viability in perpetuity. Instead of relying on conventional fundraising, Joseph established an innovative financing strategy centered around accepting life insurance policy donations—making LDSFC the first foundation in Canada to build a significant portfolio of these assets.
To manage this complex and specialized financial model, Joseph also created Pentor Charity Services, a partner organization responsible for originating, triaging, servicing, and tracking the life insurance policies owned by LDSFC. In return, LDSFC provides a fee-for-service to Pentor for these activities, ensuring the policies are properly maintained and their value protected. Furthermore, to cover the premiums and servicing fees associated with these policies, Joseph established a financing model through a limited partner fund that provides loans to support LDSFC’s long-term mission.
We recognize that this model is unconventional, and as a result, traditional charity rating agencies—such as Charity Intelligence—may struggle to evaluate us fairly. Their assessment focuses on short-term liquidity and direct spending on charitable programs, without considering the strategic, long-term nature of our investment model. We are building an endowment designed to create substantial charitable impact in the future. Until these life insurance policies mature, our available cash flow is limited—but our vision is clear, and our commitment to LDS research, education, and patient support remains unwavering.
Addressing Charity Intelligence’s Evaluation
LDSFC fully complies with the Income Tax Act and the Canada Revenue Agency’s (CRA) guidance. While registered charities are required to devote their resources to charitable activities, the CRA explicitly recognizes that charities may hold investments as long as they ultimately serve a charitable purpose. Many organizations manage substantial investment portfolios, incurring necessary costs to maintain and grow them—LDSFC is no different.
However, unlike traditional investment portfolios composed of liquid assets, our foundation holds life insurance policies, which are by nature long-term and illiquid. The Income Tax Regulations explicitly acknowledge this reality, assigning a nil value to unmatured life insurance policies for the purpose of calculating a charity’s disbursement quota (DQ). This reflects a clear legislative understanding that life insurance donations are a long-term philanthropic strategy and should not require immediate charitable disbursements.
Furthermore, Canadian accounting standards prevent us from reporting the value of our life insurance policies as assets on our financial statements. According to these rules, an asset must meet three criteria: ownership, control, and determinable duration. While LDSFC clearly meets the first two conditions, the third—fixed duration—is not met, as the timeline for realization of these policies is inherently uncertain. As a result, even though these policies represent a substantial financial resource for the foundation, they are not reflected in our financial statements, leading to an incomplete picture of our true financial position.
LDSFC has always met its annual disbursement quota, ensuring compliance with CRA regulations. While our current spending on direct charitable activities is lower than our investment in maintaining our resource portfolio, this will shift over time as policies mature. The magnitude of our existing policies—representing aggregate death benefits of over $75M—demonstrates the substantial future impact LDSFC will have. The costs associated with maintaining these assets are justified by the long-term value they will generate for LDS research, patient care, and awareness initiatives.
Unfortunately, Charity Intelligence’s rating system does not account for the evolving nature of modern charitable financing. The investment world is increasingly shifting toward alternative assets, and charities are following suit. While LDSFC may be an early adopter of this approach, it does not change our fundamental mission: to create a lasting financial foundation that will fund ground-breaking research and support for those affected by Loeys-Dietz syndrome and related heritable aortic disorders.
Moreover, we believe Charity Intelligence’s financial ratios are misleading, as they appear not to account for the full revenue reported on our T3010 filings—particularly the receipted donations of insurance policies. (Charity Intelligence adds that the figures in the T3010 filing are not reconciled with LDSFC's audited financial statements). If their calculations were adjusted to reflect the true financial picture of LDSFC, their evaluation would present a very different narrative.
Looking Ahead
We recognize that our financing model is not easily categorized within traditional charity evaluation frameworks. However, we are focused—investing in a model that will secure lasting impact for the LDS community. Time is our greatest challenge, but our conviction remains strong: we are building something transformational, we will keep growing, and we will get to our Vision: Improving the lives and quality of life of patients and families.
Charity Contact
This email address is being protected from spambots. You need JavaScript enabled to view it. Tel: 1-514-471-0442 ext. 222