The Progeria Research Foundation Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
DISCOVER TREATMENTS & CURE FOR PROGERIA & ITS AGING RELATED DISORDERS, INCLUDING HEART DISEASE.
- Income
- $4.5 million
- Spending
- $4.2 million
- Spent on programs
- 73%
- Reserves
- Over 10 years of spending
- Largest source of income
- investment income, 55%
- Employees
- 15
- Volunteers
- 60
- Highest pay
- $319,523, chief business officer
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Strong: 100 out of 100. Higher than 81% of charities in its peer group (medical research, $1m to $10m).
Reserves
35 of 35Spendable reserves would cover more than ten years of spending.
Debt
20 of 20It owes 1% of what it owns.
Living within its means
15 of 15Income exceeded spending by 7% of income.
Income trend
15 of 15Income rose 22% on the year before.
Spending floor
15 of 1573% of spending went to programs and raising each dollar of donations cost 10 cents.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 64% of charities in its peer group (medical research, $1m to $10m).
Independent board
25 of 2510 of 11 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $927,130 spent. PROGERIA DRUG TRIAL: THE PROGERIA RESEARCH FOUNDATION AND BOSTON CHILDREN'S HOSPITAL CONTINUE THEIR PARTNERSHIP FOR CONDUCTING CLINICAL DRUG TRIALS FOR CHILDREN WITH PROGERIA. THE CLINICAL TRIAL TEAM: A TEAM OF PROFESSIONALS AT BOSTON CHILDREN'S HOSPITAL AND BRIGHAM & WOMEN'S HOSPITAL WORKING WITH CHILDREN WITH PROGERIA FROM AROUND THE GLOBE.
- $574,601 spent. FUTURE TRIAL EFFORTS: PRF ENGAGES MEMBERS IN THE SCIENTIFIC COMMUNITY WITH EXPERTISE IN VARIOUS DRUGS AND/OR GENETIC THERAPIES FOR THE TREATMENT AND POTENTIAL CURE FOR PROGERIA. THE INVESTIGATION AND COLLABORATIVE EVALUATION OF DRUG THERAPIES IS PURSUED TO IDENTIFY DRUG CANDIDATES/GENETIC THERAPIES THAT CAN LEAD TO FUTURE CLINICAL TRIALS.
- $1.5 million spent. DIAGNOSTIC TESTING: PRF DEVELOPED A DIAGNOSTIC TEST FOR PROGERIA IN THE WAKE OF THE 2003 GENE DISCOVERY SO THOSE WITH PROGERIA, THEIR FAMILIES AND MEDICAL CARETAKERS CAN FOR THE FIRST TIME BE GIVEN A DEFINITIVE SCIENTIFIC DIAGNOSIS. THIS CAN TRANSLATE INTO EARLIER DIAGNOSIS, FEWER MISDIAGNOSES AND EARLY MEDICAL INTERVENTION TO ENSURE A BETTER QUALITY OF LIFE FOR THOSE WITH PROGERIA.(SEE SCHEDULE O FOR CONTINUATION)MEDICAL & RESEARCH DATABASE: THE DATABASE IS A COLLECTION OF MEDICAL RECORDS OF PROGERIA PATIENTS FROM ALL OVER THE WORLD. THE DATA IS RIGOROUSLY ANALYZED TO DETERMINE THE BEST COURSE OF TREATMENTS TO IMPROVE THE PATIENTS' QUALITY OF LIFE. THIS INFORMATION IS INVALUABLE FOR THE ATTENDING PHYSICIAN TO GUIDE THE FAMILY THROUGH THE BEST COURSE OF ACTION. DATABASE MATERIAL WAS USED TO CREATE PRF'S COMPREHENSIVE HEALTHCARE RECOMMENDATIONS HANDBOOK ON PROGERIA AIMED AT OPTIMIZING QUALITY OF LIFE. THE DATABASE WAS ALSO CRITICAL IN DETERMINING THE PRIMARY CLINICAL OUTCOME PARAMETER FOR PAST PROGERIA CLINICAL DRUG TRIALS.PRF TRANSLATION PROGRAM: IN TOUCH WITH THE WORLD. WITH A PROMINENT GLOBAL OUTREACH, PRF ELIMINATES BARRIERS OF COMMUNICATION FOR PATIENTS AND THEIR FAMILIES AROUND THE WORLD. THIS INITIATIVE HAS SUCCEEDED IN TRANSLATING PRF PROGRAM AND MEDICAL CARE MATERIALS INTO OVER 3 DOZEN DIFFERENT LANGUAGES.THE PROGERIA HANDBOOK: A GUIDE FOR FAMILIES AND HEALTH CARE PROVIDERS OF CHILDREN AND YOUNG ADULTS WITH PROGERIA THAT INCLUDES DAILY CARE RECOMMENDATIONS AND EXTENSIVE TREATMENT GUIDELINES. IT IS PUBLISHED IN ENGLISH AND SEVERAL OTHER LANGUAGES TO ALLOW ITS USE THROUGHOUT THE WORLD.INTERNATIONAL PROGERIA REGISTRY: CONSISTS OF CENTRALIZED CONTACT AND OTHER INFORMATION ON CHILDREN AND FAMILIES LIVING WITH PROGERIA. THE REGISTRY PROVIDES DATA ON PATIENT DEMOGRAPHICS AND ASSURES RAPID DISTRIBUTION OF ANY NEW INFORMATION THAT MAY BENEFIT THOSE WITH PROGERIA.SCIENTIFIC CONFERENCES; PRF ORGANIZES MEETINGS THAT BRING TOGETHER SCIENTISTS AND CLINICIANS FROM ALL OVER THE WORLD TO SHARE THEIR EXPERTISE AND CUTTING EDGE SCIENTIFIC DATA, AND FOSTER COLLABORATION IN THE FIGHT AGAINST PROGERIA AND OTHER AGING RELATED CONDITIONS.CLINICAL TRIALS: IN 2025, 7 CHILDREN AND YOUNG ADULTS CAME TO BOSTON TO UNDERGO TESTING AND OBTAIN LONAFARNIB FOR THE PROLON 3 (LONAFARNIB EXTENSION) TRIAL, WHICH ALLOWS CHILDREN AND YOUNG ADULTS WHO ARE UNABLE TO OBTAIN LONAFARNIB IN THEIR HOME COUNTRY TO RECEIVE THIS LIFE EXTENDING TREATMENT THROUGH THIS TRIAL, WHILE ALSO GATHERING IMPORTANT DISEASE-RELATED DATA. IN 2025, THE TEAM CONTINUES TO GATHER DATA FROM THE ONGOING CLINICAL DRUG TRIAL. IN ADDITION, PRF COLLABORATED WITH PRG SCIENCE & TECHNOLOGY IN A TRIAL INVOLVING THE DRUG PROGERININ. TEN CHILDREN AND YOUNG ADULTS CAME TO BOSTON THREE TIMES IN 2025 TO PARTICIPATE IN THE TRIAL. ONE OF THE 10 PARTICIPANTS ONE ALSO PARTICIPATED IN THE PROLON 3 TRIAL SIMULTANEOUSLY DURING ONE OF THE VISITS.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since September 1999.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
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