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 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.

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