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CHARITY REVIEW
Issued: March 2025 Expires: March 2027

Progeria Research Foundation

Unable to Verify
Unable to Verify
5 13
(978) 535-2594
Post Office Box 3453
Peabody, MA, 01961
https://www.progeriaresearch.org/
📄 Full Report 🖨️ Print 📋 BBB Charity Standards

Standards For Charity Accountability

Governance

  1. Board Oversight
  2. Board Size
  3. Board Meetings
  4. Board Compensation
  5. Conflict of Interest

Measuring Effectiveness

  1. Effectiveness Policy
  2. Effectiveness Report

Finances

  1. Program Expenses
  2. Fundraising Expenses
  3. Accumulating Funds
  4. Audit Report
  5. Detailed Expense Breakdown
  6. Accurate Expense Reporting
  7. Budget Plan

Fundraising & Info

  1. Truthful Materials
  2. Annual Report
  3. Website Disclosures
  4. Donor Privacy
  5. Cause Marketing Disclosures
  6. Complaints

The BBB Wise Giving Alliance requested but did not receive complete information from the organization and is unable to verify the organization's compliance with the following Standard(s) for Charity Accountability: 5, 13

Progeria Research Foundation meets the remaining 18 Standards for Charity Accountability.

Standard 10 Meets Finding


In finding that PRF meets Standard 10, which calls for unrestricted assets available for use not to exceed three times total expenses, BBB Wise Giving Alliance considered the fact that, although the organization’s 2023 audited financial statements show that it has $48,161,166 or 6.89 times the charity's total budgeted expenses of $6,980,653, there was an extenuating circumstance. In 2021, PRF received one-time revenue of $47 million from the sale of a voucher issued through an FDA program for approval of treatments for rare diseases. This revenue is considered unrestricted and added to the overall unrestricted assets, resulting in the 6.89 times ratio. Since this revenue was a one-time event, and because the organization has shared with BBB Wise Giving Alliance details of its plan to spend down this money in the near future, resulting in a return to unrestricted assets at or below the three times amount called for in Standard 10, we are reporting that this standard has been met.

Stated Purpose:
"to discover treatments and the cure for Progeria and its aging-related disorders, including heart disease."

Year, State Incorporated:
1999, MA

Progeria Research Foundation (PRF) reports that it works to cure Progeria and its aging-related disorders, with programs that include an International Progeria Registry, Cell and Tissue Bank, diagnostic testing, medical research database, and clinical trials. The organization states that its International Progeria Registry has 407 enrollees from 72 countries, which provides resources for the study of Progeria and maintains a centralized database on children and young adults with Progeria from around the world. The Cell and Tissue Bank is reported to have 404 consented participants, which provides medical researchers with genetic and biological materials from Progeria patients and their families so that research on Progeria and other aging-related diseases can be performed. The diagnostics testing program has provided a DNA-based, diagnostic test to 171 children and young adults suspected of having Hutchinson-Gilford Progeria Syndrome (HGPS) or other laminopathies. PRF's Medical and Research Database is stated to have 222 consented participants, which collects medical records from children and young adults with Progeria in order to describe what treatment strategies have been successful and provide health care recommendations. The Database has informed the production of a Clinical Care Handbook, now available in four languages. In addition, the organization oversees the Natural History Study of Progeria, which tracks survival in treated and untreated patient populations.

For the year ended December 31, 2023, Progeria Research Foundation's program expenses were:

Program services $4,348,179
Total Program Expenses $4,348,179

Chief Executive
Audrey Gordon, Esquire, President and Executive Director

Compensation*
$255,427

Chair of the Board
Scott D. Berns, MD

Chair's Profession / Business Affiliation
President and Chief Executive Officer, National Institute for Children's Health Quality

Board Size
10

Paid Staff Size
16

*2023 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Direct mail appeals, Radio, Print advertisements

Fundraising costs were 7% of related contributions. (Related contributions, which totaled $3,039,427, 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, 2023.

Source of Funds
Special events, net $303,235
Contributions $1,259,863
In-kind contributions $1,476,329
Investmet income, net $3,573,311
Total Income $6,612,738

Programs: 84% Fundraising: 4% Administrative: 12%

Total Income $6,612,738
Total expenses: $5,185,956
  Program expenses $4,348,179
  Fundraising expenses $201,163
  Administrative expenses $636,614
  Other expenses $0
Income in Excess of Expenses $1,426,782
Beginning Net Assets $46,824,384
Other Changes In Net Assets $0
Ending Net Assets $48,251,166
Total Liabilities $593,519
Total Assets $48,844,685

Note: According to PRF's 2023 audited financial statements, the organization received $1,476,329 in contributed goods and services including legal services ($1,415,469), consulting ($59,260), and graphic work ($1,600).

An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the International Association of Better Business Bureaus.

This report is not to be used for fundraising or promotional purposes.

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Report completed by:
BBB Wise Giving Alliance