Progeria Research Foundation does not meet the following 1 Standards for Charity Accountability:
Standard 5 (Conflict of Interest)
No transaction(s) in which any board or staff members have material conflicting interests with the charity resulting from any relationship or business affiliation. Factors that will be considered when concluding whether or not a related party transaction constitutes a conflict of interest and if such a conflict is material, include, but are not limited to: any arm's length procedures established by the charity; the size of the transaction relative to like expenses of the charity; whether the interested party participated in the board vote on the transaction; if competitive bids were sought and whether the transaction is one-time, recurring or ongoing.
PRF does not meet this Standard because:
- As reported by the charity, $346,830 or 14% of PRF's total 2019 program expenses is provided to a research related project at a hospital that is carried out by the spouse (PRF's Medical Director, Dr. Leslie Gordon) of the chair of the board of directors (Dr. Scott Berns). Dr. Leslie Gordon is also the sister of Audrey Gordon, President and Executive Director of the organization. This funding arrangement has been in place for several years.
In response to the findings for Standard 5, the charity stated:
- "Drs. Gordon and Berns, parents of a child with Progeria, are the co-founders of PRF. Together, they have led the organization from total obscurity to discovery of a treatment of this rare and fatal disease. Their unique involvement and qualifications are what drives PRF's mission and its tremendous success. Thus, we submit that while their vital roles technically create a related party transaction, they are justified and reasonable under the circumstances."
Progeria Research Foundation meets the remaining 19 Standards for Charity Accountability.
Progeria Research Foundation (PRF) provides resources for the doctors, patients, and families of those with Progeria, and for scientists that conduct Progeria research. The charity?s Clinical Drug Trials bring children with Progeria to Boston Children?s Hospital from around the world for treatments. PRF reports that its International Patient Registry contains registrations from the world?s Progeria population spanning 53 countries; its Cell and Tissue Bank distributes research materials to 189 research labs in 25 countries; and its Medical and Research Database has culminated in a 130-page patient care handbook. In addition the charity provides grants, holds scientific workshops and diagnostics testing that confirms the Progeria diagnosis so that PRF can then provide intervention and treatment recommendations.
For the year ended December 31, 2019, Progeria Research Foundation's program expenses were:
Program services |
$2,532,780 |
Total Program Expenses: |
$2,532,780 |
-
Chief Executive
Audrey Gordon, Esq., President, Executive Director
-
Compensation*
$146,696
-
Chair of the Board
Scott Berns
-
Chair's Profession / Business Affiliation
President and CEO, National Institute for Children's Health Quality (NICHQ)
-
Board Size
9
-
Paid Staff Size
11
*2019 compensation, includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Invitations to fund raising events, Planned giving arrangements
Fundraising costs were 3% of related contributions. (Related contributions, which totaled $5,331,653, are donations received as a result of fundraising activities.)
This organization is tax-exempt under section 501(c) (3) of the Internal Revenue Code.It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.
The following information is based on Progeria Research Foundation's audited financial statements for the year ended December 31, 2019.
Source of Funds |
Contributions |
$4,529,158 |
In-kind contributions |
$387,862 |
Special events, net |
$369,267 |
Investment income, net |
$102,997 |
Government grant |
$45,366 |
Total Income |
$5,434,650 |
- Programs: 84%
- Administrative: 11%
- Fundraising: 5%
Total Income |
$5,434,650 |
Program expenses |
$2,532,780 |
Fundraising expenses |
$157,397 |
Administrative expenses |
$344,169 |
Other expenses |
$0 |
Total expenses: |
$3,034,346 |
Income in Excess of Expenses |
$2,400,304 |
Beginning Net Assets |
$4,542,139 |
Other Changes In Net Assets |
$0 |
Ending Net Assets |
$6,942,443 |
Total Liabilities |
$508,615 |
Total Assets |
$7,451,058 |
Note: According to PRF's audited financial statements for the year ended December 31, 2019, the organization received in-kind donations totaling $383,462 in the form of legal and consulting services.