THE PROGERIA RESEARCH FOUNDATION INC: Form 990, tax year 2025
View the entire original 990 at ProPublica ↗
- Organization
- THE PROGERIA RESEARCH FOUNDATION INC (EIN 04-3460220)
- Tax period
- 2025-01-01 to 2025-12-31
- Filed
- 2026-08-26
- IRS object ID
- 202602389349301720
- Schema version
- 2025v4.2
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule D
- Schedule F
- Schedule G
- Schedule J
- Schedule L
- Schedule M
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2026-08-26T14:23:56-05:00 | ReturnTs |
| Tax Period End | 2025-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 872525370 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CITRIN COOPERMAN ADVISORS LLC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 500 W CUMMINGS PARK SUITE 5650 | AddressLine1Txt |
| City | WOBURN | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 01801 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2025-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 043460220 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | PROGERIA RESEARCH FOUNDATION INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | PROG | BusinessNameControlTxt |
| Phone | 9785352594 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 3453 | AddressLine1Txt |
| City | PEABODY | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 019613453 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | AUDREY GORDON ESQ | PersonNm |
| Person Title | PRESIDENT, EXECUTIVE DIRECTOR | PersonTitleTxt |
| Phone | 9785352594 | PhoneNum |
| Signature | 2026-08-25 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | MARCI COHEN | PreparerPersonNm |
| PTIN | P00830439 | PTIN |
| Phone | 7815694700 | PhoneNum |
| Preparation | 2026-08-25 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2025 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | AUDREY GORDON ESQ | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 200 LAKE STREET | AddressLine1Txt |
| City | PEABODY | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 01960 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $7,933,487 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.PROGERIARESEARCH.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1999 | FormationYr |
| Legal Domicile State | MA | LegalDomicileStateCd |
| Activity Or Mission | DISCOVER TREATMENTS & CURE FOR PROGERIA & ITS AGING-RELATED DISORDERS, INCLUDING HEART DISEASE. | ActivityOrMissionDesc |
| Voting Members Governing Body | 11 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 10 | VotingMembersIndependentCnt |
| Total Employee | 15 | TotalEmployeeCnt |
| Total Volunteers | 60 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $1,862,392 | PYContributionsGrantsAmt |
| CY Contributions Grants | $2,020,617 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $1,752,842 | PYInvestmentIncomeAmt |
| CY Investment Income | $2,433,984 | CYInvestmentIncomeAmt |
| PY Other Revenue | $35,074 | PYOtherRevenueAmt |
| CY Other Revenue | $3,415 | CYOtherRevenueAmt |
| PY Total Revenue | $3,650,308 | PYTotalRevenueAmt |
| CY Total Revenue | $4,458,016 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $170,155 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $0 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $1,604,326 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $1,300,190 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $208,071 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $4,127,887 | PYOtherExpensesAmt |
| CY Other Expenses | $2,863,453 | CYOtherExpensesAmt |
| PY Total Expenses | $5,902,368 | PYTotalExpensesAmt |
| CY Total Expenses | $4,163,643 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$2,252,060 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $294,373 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $48,028,500 | TotalAssetsBOYAmt |
| Total Assets EOY | $49,979,002 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $627,829 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $526,805 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $47,400,671 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $49,452,197 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | DISCOVER TREATMENTS & CURE FOR PROGERIA & ITS AGING RELATED DISORDERS, INCLUDING HEART DISEASE. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | Yes (1) | SignificantChangeInd |
| Expense | $927,130 | ExpenseAmt |
| Desc | 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. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $574,601 | ExpenseAmt |
| Desc | 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. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $1,522,985 | ExpenseAmt |
| Desc | 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. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $3,024,716 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | 0 | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | 0 | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | 0 | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | 0 | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | Yes (1) | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 18 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 15 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 11 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 10 | IndependentVotingMemberCnt |
| Family Or Business Rln | Yes (1) | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | HI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ME | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | DC | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | GINA INCROVATO DIRECTOR OF OPERATI | PersonNm |
| Phone | 9785352594 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 3453 | AddressLine1Txt |
| City | PEABODY | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 019613453 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (15 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | OfficerOfficerInd | Key EmployeeKeyEmployeeInd | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|---|
| SCOTT BERNS | ||||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| PAULA KELLY | ||||||||
| TREASURER/DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | Yes (X) | ||
| KAREN BALLACK | ||||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| SANDRA BRESNICK | ||||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| KIM PARATORE | ||||||||
| CLERK/DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | Yes (X) | ||
| JOHN MAROZZI | ||||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| LARRY MILLS | ||||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| LIZA MORRIS | ||||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| MATTHEW WINTERS | ||||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| MARK KIERAN | ||||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| ALAN BROGDON | ||||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| AUDREY GORDON | ||||||||
| PRESIDENT & EXECUTIVE DIRECTOR | 40.00 | $256,385 | $0 | $32,279 | Yes (X) | |||
| BARBARA NATKE | ||||||||
| CHIEF BUSINESS OFFICER | 40.00 | $319,523 | $0 | $0 | Yes (X) | |||
| MICHELLE FINO | ||||||||
| DIRECTOR OF DEVELOPMENT | 40.00 | $114,478 | $0 | $6,031 | Yes (X) | |||
| GINA INCROVATO | ||||||||
| DIRECTOR OF OPERATIONS | 40.00 | $113,512 | $0 | $0 | Yes (X) | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $803,898 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $38,310 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 4 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (5 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| PPD DEVELOPMENT LP | |||||
| 929 NORTH FRONT STREET | WILMINGTON | NC | 28401 | PROGRAM CONSULTANT | $261,242 |
| MERRILL LYNCH INVESTMENT ADVISORY FEES | |||||
| 225 LIBERTY STREET 37TH FLOOR | NEW YORK | NY | 10281 | INVESTMENT ADVISORY | $225,494 |
| Q SQUARED SOLUTIONS BIOSCIENCE LLC | |||||
| 19 BROWN ROAD | ITHACA | NY | 14850 | PROGRAM CONSULTANT | $160,976 |
| MCGUIREWOODS LLP | |||||
| 800 E CANAL STREET | RICHMOND | VA | 23219 | LEGAL | $154,722 |
| FARBER LLC | |||||
| 4 CORPORATE DRIVE SUITE 287 | SHELTON | CT | 06484 | LEGAL | $123,037 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 6 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $140,491 | FundraisingAmt |
| Government Grants | $98,625 | GovernmentGrantsAmt |
| All Other Contributions | $1,781,501 | AllOtherContributionsAmt |
| Noncash Contributions | $95,013 | NoncashContributionsAmt |
| Total Contributions | $2,020,617 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,874,633 | TotalRevenueColumnAmt |
| Exclusion | $1,874,633 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $4,017,747 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $3,458,396 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $559,351 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $559,351 | TotalRevenueColumnAmt |
| Exclusion | $559,351 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $20,490 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $140,491 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $17,075 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $3,415 | TotalRevenueColumnAmt |
| Exclusion | $3,415 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $4,458,016 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $2,437,399 | ExclusionAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $608,187 | TotalAmt |
| Program Services | $492,721 | ProgramServicesAmt |
| Management And General | $43,300 | ManagementAndGeneralAmt |
| Fundraising | $72,166 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $556,167 | TotalAmt |
| Program Services | $216,434 | ProgramServicesAmt |
| Management And General | $275,568 | ManagementAndGeneralAmt |
| Fundraising | $64,165 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $27,235 | TotalAmt |
| Program Services | $19,573 | ProgramServicesAmt |
| Management And General | $4,320 | ManagementAndGeneralAmt |
| Fundraising | $3,342 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $25,091 | TotalAmt |
| Program Services | $13,233 | ProgramServicesAmt |
| Management And General | $8,711 | ManagementAndGeneralAmt |
| Fundraising | $3,147 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $83,510 | TotalAmt |
| Program Services | $49,844 | ProgramServicesAmt |
| Management And General | $24,996 | ManagementAndGeneralAmt |
| Fundraising | $8,670 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $280,397 | TotalAmt |
| Program Services | $207,575 | ProgramServicesAmt |
| Management And General | $72,822 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $64,008 | TotalAmt |
| Management And General | $64,008 | ManagementAndGeneralAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $225,494 | TotalAmt |
| Management And General | $225,494 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $402,329 | TotalAmt |
| Program Services | $361,336 | ProgramServicesAmt |
| Management And General | $19,668 | ManagementAndGeneralAmt |
| Fundraising | $21,325 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $108,503 | TotalAmt |
| Program Services | $38,872 | ProgramServicesAmt |
| Management And General | $37,865 | ManagementAndGeneralAmt |
| Fundraising | $31,766 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $43,042 | TotalAmt |
| Management And General | $43,042 | ManagementAndGeneralAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $55,180 | TotalAmt |
| Program Services | $11,036 | ProgramServicesAmt |
| Management And General | $41,354 | ManagementAndGeneralAmt |
| Fundraising | $2,790 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,240 | TotalAmt |
| Program Services | $7,400 | ProgramServicesAmt |
| Management And General | $1,140 | ManagementAndGeneralAmt |
| Fundraising | $700 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $19,319 | TotalAmt |
| Program Services | $10,457 | ProgramServicesAmt |
| Management And General | $8,862 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,394 | TotalAmt |
| Management And General | $9,394 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt |
|---|---|---|
| DRUG TRIAL - OTHER EXPE | $864,089 | $864,089 |
| FUTURE TRIAL EFFORTS - | $338,863 | $338,863 |
| SCIENTIFIC WORKSHOP - O | $145,914 | $145,914 |
| DIAGNOSTIC TESTING | $85,550 | $85,550 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $212,131 | TotalAmt |
| Program Services | $161,819 | ProgramServicesAmt |
| Management And General | $50,312 | ManagementAndGeneralAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,163,643 | TotalAmt |
| Program Services | $3,024,716 | ProgramServicesAmt |
| Management And General | $930,856 | ManagementAndGeneralAmt |
| Fundraising | $208,071 | FundraisingAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,957,702 | BOYAmt |
| EOY | $8,309,848 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $254,124 | BOYAmt |
| EOY | $123,656 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $44,104 | BOYAmt |
| EOY | $45,299 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $91,446 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $70,999 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $17,277 | BOYAmt |
| EOY | $20,447 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $41,506,592 | BOYAmt |
| EOY | $41,294,699 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $83,731 | BOYAmt |
| EOY | $73,274 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $164,970 | BOYAmt |
| EOY | $111,779 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $48,028,500 | BOYAmt |
| EOY | $49,979,002 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $462,319 | BOYAmt |
| EOY | $415,106 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $165,510 | BOYAmt |
| EOY | $111,699 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $627,829 | BOYAmt |
| EOY | $526,805 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $47,140,671 | BOYAmt |
| EOY | $49,332,586 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $260,000 | BOYAmt |
| EOY | $119,611 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $47,400,671 | BOYAmt |
| EOY | $49,452,197 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $48,028,500 | BOYAmt |
| EOY | $49,979,002 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $294,373 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $1,757,153 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,716,497 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $2,155,952 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,563,098 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,897,466 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $2,024,032 | CurrentTaxYearAmt |
| Total | $9,357,045 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,716,497 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $2,155,952 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,563,098 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,897,466 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $2,024,032 | CurrentTaxYearAmt |
| Total | $9,357,045 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Support Total170 | $9,357,045 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $930,288 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,032,490 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,391,020 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,890,780 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,874,633 | CurrentTaxYearAmt |
| Total | $7,119,211 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $46,493,405 | CurrentTaxYearMinus4YearsAmt |
| Total | $46,493,405 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $62,969,661 | TotalSupportAmt |
| Public Support CY170 | 0.14860 | PublicSupportCY170Pct |
| Public Support PY170 | 0.15370 | PublicSupportPY170Pct |
| Ten Pct Facts Crcmstncs Test CY | Yes (X) | TenPctFactsCrcmstncsTestCYInd |
| Facts And Circumstances Test | SUMMARY OF FACTS AND CIRCUMSTANCES WHICH ESTABLISH THAT THE PROGERIA RESEARCH FOUNDATION (PRF) IS IN THE NATURE OF AN ORGANIZATION THAT IS PUBLICLY SUPPORTED.THE MISSION OF THE PROGERIA RESEARCH FOUNDATION (PRF) IS TO FIND TREATMENTS AND THE CURE FOR HUTCHINSON-GILFORD PROGERIA (PROGERIA) SYNDROME, A FATAL, ULTRA-RARE, "RAPID AGING" DISEASE THAT AFFLICTS CHILDREN WHO, WITHOUT TREATMENT, DIE AT AN AVERAGE AGE OF 14 1/2 YEARS.PRF HAS SOLICITED CONTRIBUTIONS FROM THE GENERAL PUBLIC FROM ITS INCEPTION IN 1999. PRF HAS REPORTED THE FOLLOWING PERCENTAGES OF PUBLIC SUPPORT FOR THE PAST 10 YEARS:2025 = 14.86%2024 = 15.37%2023 = 18.01%2022 = 19.66%2021 = 19.71%2020 = 74.45%2019 = 75.54%2018 = 86.54%2017 = 94.36%2016 = 94.36%2015 = 90.84%AS ILLUSTRATED ABOVE, PRIOR TO RECEIVING THE EXTRAORDINARY FUNDING IN 2021, PRF'S PERCENTAGE OF PUBLIC SUPPORT SIGNIFICANTLY EXCEEDED 33 1/3%. PRF CONTINUES ALL FUNDRAISING EFFORTS AND EXPECTS TO RETURN TO THE 33 1/3% OF PUBLIC SUPPORT IN THE COMING YEARS.NUMBER OF DONORS FOR THE PAST 10 YEARS:2025 = 1,9902024 = 2,2602023 = 2,1712022 = 2,4322021 = 2,4412020 = 2,7862019 = 3,2452018 = 3,6702017 = 3,8592016 = 4,1462015 = 4,097WITH A PROGRAM RATIO THAT MEETS OR EXCEEDS 80% EACH YEAR, PRF EXPENDS SUBSTANTIALLY ALL OF ITS ANNUAL INCOME FOR ITS EXEMPT PURPOSE AND DEPENDS ON THE FUNDS IT SOLICITS ANNUALLY FROM THE PUBLIC AS WELL AS ITS INVESTMENT INCOME TO SUPPORT THEIR PROGRAMS ON AN ONGOING BASIS. FOR ITS ENTIRE EXISTENCE PRF HAS BEEN RELENTLESSLY FOCUSED ON FINDING TREATMENTS AND THE CURE FOR PROGERIA.IN NOVEMBER 2020, FEDERAL FOOD AND DRUG ADMINISTRATION (FDA) APPROVAL WAS GRANTED FOR LONAFARNIB (ALSO KNOWN BY ITS BRAND NAME ZOKINVY) FOR THE TREATMENT OF PROGERIA. THE PRF-FUNDED CLINICAL DRUG TRIAL INVOLVING LONAFARNIB PROVIDED SIGNIFICANT DATA AND ANALYSIS FOR THE NEW DRUG APPLICATION (NDA) THAT LED TO APPROVAL. AS A DIRECT RESULT OF THIS APPROVAL, AND IN ACCORDANCE WITH THE FEDERAL FOOD, DRUG, AND COSMETIC ACT (FD&C ACT), THE FDA AWARDED A PRIORITY REVIEW VOUCHER (PRV) TO THE SPONSOR OF THIS RARE PEDIATRIC DISEASE PRODUCT NDA. IN 2021, PURSUANT TO A COLLABORATION AGREEMENT WITH THE SPONSOR, PRF RECEIVED PROCEEDS ON THE SALE OF THE PRV IN THE AMOUNT OF $46,493,405. IT IS THE INTENTION OF PRF TO USE THIS EXTRAORDINARY FUNDING TO SUPPORT THE NEXT GENERATION OF RESEARCH AND FUTURE DRUG TRIALS THAT WILL LEAD TO MORE ADVANCED TREATMENTS AND, ULTIMATELY, THE CURE FOR PROGERIA.ANNUALLY, PRF SOLICITS CONTRIBUTIONS FROM THE PUBLIC TO SUPPORT ITS ONGOING PROGRAMS AND SERVICES. FUNDRAISING EFFORTS INCLUDE THE FOLLOWING: A. VOLUNTEER-LED EVENTS (SCHOOL FUNDRAISERS, GOLF TOURNAMENTS, MOTORCYCLE RIDES, ETC.)B. AN ANNUAL 5K RUN, 2-MILE WALK RACE IN PEABODY, MA WITH 300 PARTICIPANTSC. THE ANNUAL FALMOUTH ROAD RACE, WITH A TEAM OF APPROXIMATELY 20 RUNNERSD. THE ANNUAL BOSTON MARATHON, WITH A 2-10 PERSON TEAME. BI-ANNUAL GALA & AUCTION, INCLUDING 350 GUESTSF. MAILING AND SOCIAL MEDIA CAMPAIGNS: MID-YEAR "ONE POSSIBLE AND END OF YEAR "ANNUAL APPEAL", AMONG OTHERS.FUNDS RAISED ARE USED TO SUPPORT THE FOLLOWING PROGRAMS:A. ONGOING CLINICAL DRUG TRIALS AT BOSTON CHILDREN'S HOSPITALB. RESEARCH FOR POTENTIAL FUTURE CLINICAL TRIALSC. THE PRF DIAGNOSTIC TESTING PROGRAMD. THE PRF CELL & TISSUE BANKE. THE PRF MEDICAL & RESEARCH DATABASEF. PRF-ORGANIZED SCIENTIFIC CONFERENCESG. WEBSITE FOR PUBLIC AWARENESS AND COMMUNICATIONH. UPDATING AND DISTRIBUTION OF THE PROGERIA HANDBOOK A TREATMENT GUIDE FOR FAMILIES AND HEALTH CARE PROVIDERS OF THOSE WITH PROGERIAI. THE PRF INTERNATIONAL PROGERIA REGISTRYJ. PUBLIC AWARENESSK. DEVELOPMENT OF A BIOMARKER TO MEASURE THE DISEASE-CAUSING TOXIC PROTEIN, PROGERIN PRF HAS AN ELEVEN-MEMBER BOARD OF DIRECTORS. BOARD MEMBERS' PROFESSIONAL BACKGROUNDS INCLUDE THE LEGAL, ACCOUNTING, PUBLIC RELATIONS, EVENT PLANNING FIELDS AS WELL AS EXECUTIVE LEADERSHIP AND MANAGEMENT OF FOR-PROFIT BUSINESSES. THE BOARD PROVIDES OVERSIGHT OF OPERATIONS AND PROGRAMS TO ENSURE NO ACTIVITIES ARE FOR THE BENEFIT OF PRIVATE INTERESTS.ON AN ANNUAL BASIS, PRF NORMALLY RECEIVES A SUBSTANTIAL PART OF ITS SUPPORT FROM THE GENERAL PUBLIC, GOVERNMENT GRANTS, AND NET INVESTMENT EARNINGS. THE SUPPORT PRF RECEIVES IS USED TO CONTINUE THE MISSION TO DISCOVER TREATMENTS AND THE CURE FOR PROGERIA. IN 2021, PRF RECEIVED AN EXTRAORDINARY SOURCE OF SUPPORT THAT WAS THE RESULT OF DECADES-LONG RESEARCH AND OPERATION OF PRF'S RESEARCH-RELATED PROGRAMS. | FactsAndCircumstancesTestTxt |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule D IRS990ScheduleD
Leasehold Improvements LeaseholdImprovementsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $7,132 | OtherCostOrOtherBasisAmt |
| Depreciation | $5,457 | DepreciationAmt |
| Book Value | $1,675 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $84,314 | OtherCostOrOtherBasisAmt |
| Depreciation | $65,542 | DepreciationAmt |
| Book Value | $18,772 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $20,447 | TotalBookValueLandBuildingsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | OPERATING LEASE OBLIGATIONS | Desc |
| Amt | $111,699 | Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $111,699 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $6,794,879 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $1,757,153 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $805,204 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $2,562,357 | RevenueNotReportedAmt |
| Revenue Subtotal | $4,232,522 | RevenueSubtotalAmt |
| Investment Expenses Not Incld | $225,494 | InvestmentExpensesNotIncldAmt |
| Revenue Not Reported Fincl Stmt | $225,494 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $4,458,016 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $4,743,353 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $805,204 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $805,204 | ExpensesNotReportedAmt |
| Expenses Subtotal | $3,938,149 | ExpensesSubtotalAmt |
| Investment Expenses Not Incld2 | $225,494 | InvestmentExpensesNotIncld2Amt |
| Expenses Not Rpt Fincl Stmt | $225,494 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $4,163,643 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART X, LINE 2: | FormAndLineReferenceDesc |
| Explanation | THE ORGANIZATION ACCOUNTS FOR THE UNCERTAINTY IN INCOME TAXES IN ACCORDANCE WITH THE PROVISIONS OF FASB ASC TOPIC NO. 740 INCOME TAXES (ASC 740), WHICH PRESCRIBES A RECOGNITION THRESHOLD OF MORE LIKELY-THAN-NOT, AND A MEASUREMENT ATTRIBUTE FOR ALL TAX POSITIONS TAKEN OR EXPECTED TO BE TAKEN ON A TAX RETURN, IN ORDER FOR THOSE TAX POSITIONS TO BE RECOGNIZED IN THE FINANCIAL STATEMENTS. WHEN NECESSARY, THE ORGANIZATION ACCOUNTS FOR INTEREST AND PENALTIES RELATED TO UNCERTAIN TAX POSITIONS AS PART OF ITS PROVISION FOR INCOME TAXES. THE ORGANIZATION DOES NOT EXPECT THAT UNRECOGNIZED TAX BENEFITS ARISING FROM TAX POSITIONS WILL CHANGE SIGNIFICANTLY WITHIN THE NEXT 12 MONTHS. | ExplanationTxt |
Schedule F IRS990ScheduleF
Account Activities Outside US AccountActivitiesOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | CANADA | RegionTxt |
| Offices | 0 | OfficesCnt |
| Employee | 0 | EmployeeCnt |
| Type Of Activities Conducted | PROGRAM SERVICES | TypeOfActivitiesConductedTxt |
| Specific Services Provided | SCIENTIFIC RESEARCH | SpecificServicesProvidedTxt |
| Region Total Expenditures | $46,252 | RegionTotalExpendituresAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $46,252 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $46,252 | TotalSpentAmt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | ONEPOSSIBLE ANNUAL CAMPAIGN | Event1Nm |
| Gross Receipts Event1 | $125,271 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $117,956 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $7,315 | GrossRevenueEvent1Amt |
| Other Direct Expenses Event1 | $6,096 | OtherDirectExpensesEvent1Amt |
| Event2 | ROAD RACE | Event2Nm |
| Gross Receipts Event2 | $35,710 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $22,535 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $13,175 | GrossRevenueEvent2Amt |
| Other Direct Expenses Event2 | $10,979 | OtherDirectExpensesEvent2Amt |
| Gross Receipts Total | $160,981 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $140,491 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $20,490 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $17,075 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $17,075 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $3,415 | NetIncomeSummaryAmt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | Yes (1) | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (2 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| BARBARA NATKE | ||||||||||||||
| CHIEF BUSINESS OFFICER | $315,273 | $0 | $4,250 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $319,523 | $0 | $0 | $0 |
| AUDREY GORDON | ||||||||||||||
| PRESIDENT & EXECUTIVE DIRECTOR | $226,385 | $0 | $30,000 | $0 | $0 | $0 | $0 | $0 | $32,279 | $0 | $288,664 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 7 | FormAndLineReferenceDesc |
| Explanation | THE PRESIDENT & EXECUTIVE DIRECTOR IS ELIGIBLE TO RECEIVE A DISCRETIONARY PERFORMANCE-BASED BONUS, AS DETERMINED AND APPROVED BY THE BOARD OF DIRECTORS. THE POTENTIAL ANNUAL BONUS IS BASED ON THE ANNUAL PERFORMANCE AS MEASURED AGAINST WEIGHTED PERFORMANCE OBJECTIVES ESTABLISHED EACH YEAR. THE BOARD OF DIRECTORS FORMALLY MEETS IN EXECUTIVE SESSION TO EVALUATE PERFORMANCE AND DETERMINE THE AMOUNT OF ANY BONUS AWARD. THE CHIEF BUSINESS OFFICER'S EMPLOYMENT AGREEMENT INCLUDES A STRUCTURED BONUS ARRANGEMENT TIED TO SPECIFIED PERFORMANCE OBJECTIVES. BECAUSE THE APPLICABLE PERFORMANCE GOAL WAS NOT ACHIEVED IN 2025, NO BONUS WAS EARNED UNDER THE CONTRACTUAL BONUS PLAN. HOWEVER, A DISCRETIONARY BONUS WAS AWARDED UNDER THE ORGANIZATION'S EMPLOYEE INCENTIVE PROGRAM, WHICH APPLIES A STANDARDIZED FORMULA THAT CONSIDERS EMPLOYEE PERFORMANCE, SALARY LEVEL, AND YEARS OF SERVICE. | ExplanationTxt |
Schedule L IRS990ScheduleL
Bus Tr Involve Interested Prsn BusTrInvolveInterestedPrsnGrp
Name Of Interested NameOfInterested
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | AUDREY GORDON | PersonNm |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Relationship Description | FAMILY MEMBER OF SCOTT BERNS, DIRECTOR | RelationshipDescriptionTxt |
| Transaction | $256,385 | TransactionAmt |
| Transaction | EMPLOYMENT COMPENSATION | TransactionDesc |
| Sharing Of Revenues | 0 | SharingOfRevenuesInd |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 4 | ContributionCnt |
| Noncash Contributions Rpt F990 | $95,013 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | MARKET QUOTE | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form8283 Received | 0 | Form8283ReceivedCnt |
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | Yes (1) | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | SCHEDULE M, PART I, COLUMN (B) | FormAndLineReferenceDesc |
| Explanation | THE ORGANIZATION REPORTS THE NUMBER OF SEPARATE NONCASH CONTRIBUTIONS RECEIVED. FOR CONTRIBUTIONS OF SECURITIES, EACH SEPARATE DONOR GIFT IS TREATED AS ONE CONTRIBUTION REGARDLESS OF THE NUMBER OF SHARES TRANSFERRED. DURING THE YEAR, THE ORGANIZATION RECEIVED FOUR SEPARATE STOCK CONTRIBUTIONS FROM THREE DONORS. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART III, LINE 3 | THE GRANTS PROGRAM WAS REVAMPED. PRF LEADERSHIP AND THE MRC IMPLEMENTED A CHANGE TO THE GRANTING STRATEGY AS FOLLOWS: THE BIANNUAL CALL FOR APPLICATIONS HAS BEEN REPLACED BY TWO TYPES OF GRANT PATHWAYS: 1) A PROACTIVE PATHWAY WHERE PRF IDENTIFIES A NEED AND SEEKS OUT LABORATORIES BEST SUITED TO CONDUCT THE RESEARCH THAT WILL FILL THAT NEED; 2) AN INVESTIGATOR-DRIVEN PATHWAY WHERE PRF WILL ENTERTAIN RESEARCH PROJECTS BASED ON COMMUNICATIONS INITIATED BY THE INVESTIGATOR THAT INCLUDES A BRIEF ABSTRACT, VIA RESEARCHGRANTS@PROGERIARESEARCH.ORG. THERE IS NO SET DUE DATE FOR THESE COMMUNICATIONS, AND FULL PROPOSALS ARE BY INVITATION-ONLY. PRF WILL ENLIST SUBJECT MATTER EXPERTS TO REVIEW THE FULL RESEARCH PROPOSAL. |
| FORM 990, PART VI, SECTION A, LINE 2 | AUDREY GORDON HAS A FAMILY RELATIONSHIP WITH SCOTT BERNS. AUDREY IS THE SISTER OF LESLIE GORDON WHO IS THE VOLUNTEER MEDICAL DIRECTOR OF PROGERIA AND WIFE OF SCOTT BERNS. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE 990 IS REVIEWED BY THE PRESIDENT, EXECUTIVE DIRECTOR AND THE TREASURER PRIOR TO FILING. |
| FORM 990, PART VI, SECTION B, LINE 12C | DISCUSSED AT ANNUAL BOARD MEETINGS. |
| FORM 990, PART VI, SECTION B, LINE 15 | SALARIES ARE DETERMINED BY THE INDEPENDENT VOTING MEMBERS AFTER REVIEW OF THE DUTIES PERFORMED AND DATA AS TO COMPARABLE COMPENSATION FOR SIMILARLY QUALIFIED PERSONS. |
| FORM 990, PART VI, SECTION C, LINE 19 | ALL DOCUMENTS ARE AVAILABLE ON THE ORGANIZATION'S WEBSITE. |
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