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NATIONAL PKU ALLIANCE INC: Form 990, tax year 2025

View the entire original 990 at ProPublica ↗

Organization
NATIONAL PKU ALLIANCE INC (EIN 26-2849140)
Tax period
2025-01-01 to 2025-12-31
Filed
2026-05-11
IRS object ID
202611319349303626
Schema version
2025v4.1
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 ReturnHeader

FieldValueIRS element (for citing)
Return2026-05-11T13:50:46-05:00ReturnTs
Tax Period End2025-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN410746749PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1CLIFTONLARSONALLEN LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line11660 OSHKOSH AVE SUITE 200AddressLine1Txt
CityOSHKOSHCityNm
State AbbreviationWIStateAbbreviationCd
ZIP54902ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2025-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN262849140EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1NATIONAL PKU ALLIANCE INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlNATIBusinessNameControlTxt
Phone8556758211PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line12014 ELECTRIC ROAD 212AddressLine1Txt
CityROANOKECityNm
State AbbreviationVAStateAbbreviationCd
ZIP24018ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonRHONDA CONNOLLYPersonNm
Person TitlePRESIDENTPersonTitleTxt
Phone8556758211PhoneNum
Signature2026-05-08SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonKELCEY LEITLPreparerPersonNm
PTINP01584977PTIN
Phone9202315890PhoneNum
Preparation2026-05-08PreparationDt
FieldValueIRS element (for citing)
Tax2025TaxYr
Build TS2025-03-06 01:10:19ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Address ChangeYes (X)AddressChangeInd
Principal OfficerRHONDA CONNOLLYPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line12014 ELECTRIC ROAD 212AddressLine1Txt
CityROANOKECityNm
State AbbreviationVAStateAbbreviationCd
ZIP24018ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$3,673,900GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.NPKUA.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2008FormationYr
Legal Domicile StateDELegalDomicileStateCd
Activity Or MissionIMPROVE THE LIVES OF INDIVIDUALS WITH PKU AND PURSUE A CURE FOR PKU.ActivityOrMissionDesc
Voting Members Governing Body12VotingMembersGoverningBodyCnt
Voting Members Independent12VotingMembersIndependentCnt
Total Employee6TotalEmployeeCnt
Total Volunteers150TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$2,050,617PYContributionsGrantsAmt
CY Contributions Grants$2,481,858CYContributionsGrantsAmt
PY Program Service Revenue$57,609PYProgramServiceRevenueAmt
CY Program Service Revenue$14,946CYProgramServiceRevenueAmt
PY Investment Income$439,923PYInvestmentIncomeAmt
CY Investment Income$278,337CYInvestmentIncomeAmt
PY Other Revenue$15,240PYOtherRevenueAmt
CY Other Revenue-$100,706CYOtherRevenueAmt
PY Total Revenue$2,563,389PYTotalRevenueAmt
CY Total Revenue$2,674,435CYTotalRevenueAmt
PY Grants And Similar Paid$488,881PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$459,015CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$684,090PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$756,922CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$253,147CYTotalFundraisingExpenseAmt
PY Other Expenses$958,732PYOtherExpensesAmt
CY Other Expenses$816,901CYOtherExpensesAmt
PY Total Expenses$2,131,703PYTotalExpensesAmt
CY Total Expenses$2,032,838CYTotalExpensesAmt
PY Revenues Less Expenses$431,686PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$641,597CYRevenuesLessExpensesAmt
Total Assets BOY$5,311,012TotalAssetsBOYAmt
Total Assets EOY$6,181,230TotalAssetsEOYAmt
Total Liabilities BOY$356,757TotalLiabilitiesBOYAmt
Total Liabilities EOY$350,810TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$4,954,255NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$5,830,420NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionOUR MISSION IS TO IMPROVE THE LIVES OF INDIVIDUALS WITH PKU, PURSUE A CURE BY EXPANDING RESEARCH AND PROVIDE EDUCATION AND SUPPORT TO INDIVIDUALS LIVING WITH PKU AND THEIR CAREGIVERS.MissionDesc
Significant New Program SrvcYes (1)SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$659,425ExpenseAmt
Grant$424,958GrantAmt
Revenue$0RevenueAmt
DescTHE NPKUA APPROVED 5 RESEARCH GRANTS FROM THE 2025 RESEARCH GRANT CYCLE FOR A TOTAL OF $425K. THE RESEARCH PROJECTS FOCUS ON PKU ASSESSMENT TOOLS AS WELL AS PKU TREATMENTS AND THERAPIES THAT DRIVE PROGRESS TOWARD A CURE. AS OF 2025, THE NPKUA HAS AWARDED $6,419,699 IN SUPPORT OF 88 RESEARCH PROJECTS.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$497,406ExpenseAmt
Grant$34,057GrantAmt
Revenue$28,375RevenueAmt
DescCOMMUNITY ENGAGEMENT CONTINUES TO BE A CORE PILLAR OF THE NATIONAL PKU ALLIANCE. THE COMMUNITY ENGAGEMENT DIRECTOR IS RESPONSIBLE FOR PLANNING AND MANAGING PROGRAMS FOR THE PKU COMMUNITY, INCLUDING A MENTORING PROGRAM, COMMUNITY CALLS, SUPPORT KITS, MATERNAL PKU PATIENT SUPPORT, ADVOCACY EFFORTS AND AN AFFILIATE PROGRAM.THE DIRECTOR SCHEDULES, MANAGES AND ATTENDS VIRTUAL CALLS WITH THE COMMUNITY ACROSS DIFFERENT PKU AGE GROUPS AND PKU CAREGIVER TYPES. 48 CALLS WERE HELD IN 2025 WITH 250 ATTENDEES.IN 2025, THE NPKUA MENTOR PROGRAM GREW TO SUPPORT OVER 45 CAREGIVERS AND INDIVIDUALS WITH PKU THROUGH PERSONALIZED ONE-ON-ONE MENTORING, WITH MENTORS CONNECTING VIRTUALLY AND IN PERSON TO SHARE EXPERIENCES AND DEVELOP SKILLS TO BETTER ASSIST THEIR MENTEES.THE NPKUA ADVOCACY COMMITTEE WORKS ALONGSIDE MEMBERS OF THE BROADER RARE DISEASE COMMUNITY TO ADVANCE EFFORTS AROUND NUTRITION, EQUITY AND OTHER PRIORITIES OF THE PKU COMMUNITY. THE COMMITTEE DEVELOPED AN ADVOCACY MEDIA TOOLKIT TO HELP COMMUNITY MEMBERS SHARE THEIR STORIES. STAFF AND ADVOCACY COMMITTEE VOLUNTEERS HAVE ALSO RESPONDED TO THE TERMINATION OF THE ACHDNC (ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS AND CHILDREN) BY CALLING ON CONSTITUENTS, THROUGH DATABASE-WIDE EMAIL AND SOCIAL MEDIA OUTREACH, TO SIGN-ON TO CONTACT THEIR LEGISLATORS AND SHARE THEIR STORY AND SUPPORT OF NBS. STARTED A NEWBORN SCREENING VIDEO SERIES TO BE USED IN SEPTEMBER, RECOGNIZED AS NEWBORN SCREENING AWARENESS MONTH. THE SERIES RAISES AWARENESS ABOUT THE IMPORTANCE OF NEWBORN SCREENING, AND THE CRITICAL ROLE OF NEWBORN SCREENING IN IDENTIFYING SERIOUS CONDITIONS THAT CAN LEAD TO SEVERE DISABILITY OR DEATH IF LEFT UNDIAGNOSED. IN TOTAL, NPKUA SUPPORTED 10 STATE AND FEDERAL LEGISLATIVE ADVOCACY EFFORTS.IN 2025 NPKUA PROVIDED $34,057 TO NPKUA AFFILIATES TO SUPPORT COMMUNITY EVENTS AND CAMPS IN THEIR REGIONS. DURING THE YEAR, NPKUA ALSO MET ONE-ON-ONE WITH INDIVIDUAL AFFILIATE LEADERS TO BETTER UNDERSTAND THEIR GOALS AND NEEDS. IN 2025, 206 NEWBORN AND KINDERGARTEN KITS WERE DELIVERED TO FAMILIES WELCOMING A NEW BABY WITH PKU OR SUPPORTING A NEW KINDERGARTENER WITH PKU.IN 2025, 55 PACKAGES OF DIET-APPROPRIATE FOOD WERE DELIVERED TO MATERNAL PKU PATIENTS TO BEST SUPPORT THEIR LOW-PROTEIN DIET.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$138,267ExpenseAmt
Grant$0GrantAmt
Revenue$0RevenueAmt
DescTHE NPKUA HELD A MULTIDISCIPLINARY SCIENCE CONFERENCE IN 2025. THIS UNIQUE CONFERENCE INCLUDED OVER 100 ACADEMIC RESEARCHERS, CLINICIANS, INDUSTRY PARTNERS IN A COLLABORATIVE FORUM TO FURTHER THE DEVELOPMENT OF TREATMENTS FOR PKU.THE KEYNOTE SPEAKER, DR. PETER MARKS FROM THE FDA, ADDRESSED NOVEL CLINICAL TRIAL DESIGNS USED IN THE APPROVAL PROCESS OF DRUGS FOR RARE DISEASES. SESSIONS AND DISCUSSIONS INCLUDED NOVEL APPROACHES TO CLINICAL TRIAL DESIGN FOR RARE DISEASES, DEVELOPING NEUROCOGNITIVE OUTCOME ASSESSMENT TOOLS TO BEST DETERMINE THE IMPACT OF NEW TREATMENTS, STRATEGIES TO OVERCOME CHALLENGES RELATED TO DIETARY DATA COLLECTION FOR CLINICAL TRIALS, AND MANAGING SUSTAINABILITY IN CLINICAL TRIALS. FOCUS ALSO INCLUDED BRINGING ADULTS BACK TO CARE AND CHALLENGES FACED WITH THE DRUG APPROVAL PROCESS.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (3 entries)

ExpenseExpenseAmtRevenueRevenueAmtDescDescGrantGrantAmt
$117,292$10,578NPKUA HOSTED THE TRUEPKU INITIATIVE TO SHARE THE PKU EXPERIENCE WITH U.S. FOOD AND DRUG ADMINISTRATION (FDA) STAFF, PEOPLE WORKING IN LIFE SCIENCE COMPANIES, HEALTH CARE PROFESSIONALS AND ACADEMIC RESEARCHERS TO HELP SHAPE THE DEVELOPMENT OF NEW MEDICAL THERAPIES AND APPROACHES TO TREATING AND MONITORING PKU. AS PART OF THE EXTERNALLY-LED PATIENT-FOCUSED DRUG DEVELOPMENT (EL-PFDD) PROGRAM, THIS MEETING TOOK PLACE VIRTUALLY ON MAY 8, 2025 IN PARTNERSHIP WITH OTHER PKU-RELATED ORGANIZATIONS AND SPONSORS. 31 MEMBERS FROM THE PKU COMMUNITY SHARED THEIR TESTIMONY. THE VOICE OF THE PATIENT REPORT SUMMARIZES THE MEETING INSIGHTS, PERSONAL STORIES AND KEY THEMES SHARED THROUGHOUT THE FIVE-HOUR MEETING, INCLUDING POWERFUL QUOTES FROM COMMUNITY MEMBERS AND PERSPECTIVES GATHERED BEFORE, DURING AND AFTER THE EVENT. BOTH THE LIVE MEETING AND REPORT CAN BE FOUND AT WWW.NPKUA.ORG/TRUEPKU/. THE MEETING HAS ATTRACTED 1,300 VIEWS ON YOUTUBE.
$83,918$4,368IN 2025, THE NPKUA HOSTED A REGIONAL COMMUNITY CONFERENCE ON SEPTEMBER 6 IN SAN DIEGO, CALIFORNIA. ATTENDEES INCLUDED 47 INDIVIDUALS WITH PKU, THEIR FAMILIES/CAREGIVERS, INDUSTRY PARTNERS, AND LEADING EXPERTS IN THE FIELD OF PKU RESEARCH, CLINICAL CARE, NUTRITION, AND ADVOCACY. IN TOTAL, WE WELCOMED 180 ATTENDEES. WE HELD MEANINGFUL CONVERSATIONS THROUGH EDUCATIONAL PRESENTATIONS AND ACTIVITIES DISCUSSING WHAT'S NEW IN PKU, STAYING ACTIVE WITH PKU, CLINICAL TRIALS, FOOD AND FORMULA OFFERINGS, GENE EDITING AND GENE THERAPY, TRAVELING WITH PKU AND HOME PHE MONITOR DEVELOPMENT.$0
$67,571$0IN THE PKU PATIENT REGISTRY, NPKUA UPGRADED THE PLATFORM, STRENGTHENING THE REGISTRY'S ABILITY TO SUPPORT PKU RESEARCH. REGISTRY PARTICIPANTS GREW TO 1,130, WITH 864 NEW SURVEY SUBMISSIONS IN 2025. THE REGISTRY SUPPORTED RECRUITMENT FOR 4 EXTERNAL RESEARCH STUDIES AND SHARED DATA IN ITS FIRST SCIENTIFIC PUBLICATION.$0
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$268,781TotalOtherProgSrvcExpenseAmt
Total Other Prog Srvc Grant$0TotalOtherProgSrvcGrantAmt
Total Other Prog Srvc Revenue$14,946TotalOtherProgSrvcRevenueAmt
Total Program Service Expenses$1,563,879TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying Activities0LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 Footnote0IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash ContriYes (1)DeductibleNonCashContriInd
Deductible Art ContributionYes (1)DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document16IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee6EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members12GoverningBodyVotingMembersCnt
Independent Voting Member12IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local ChaptersYes (1)LocalChaptersInd
Policies Reference ChaptersYes (1)PoliciesReferenceChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process OtherYes (1)CompensationProcessOtherInd
Investment In Joint VentureYes (1)InvestmentInJointVentureInd
Written Policy Or ProcedureYes (1)WrittenPolicyOrProcedureInd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldAKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
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States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNVStatesWhereCopyOfReturnIsFldCd
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States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
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States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
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States Where Copy Of Return Is FldUTStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1CATHERINE WARRENBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone8556758211PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line12014 ELECTRIC ROAD 212AddressLine1Txt
CityROANOKECityNm
State AbbreviationVAStateAbbreviationCd
ZIP24018ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (16 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeIndIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
CATHERINE WARREN
EXECUTIVE DIRECTOR40.00Yes (X)$193,591$0$16,723
SUSAN GRAY
DIRECTOR OF DEVELOPMENT40.00$147,246$0$11,760Yes (X)
SARAH GALLAGHER
DIRECTOR OF COMMUNITY ENGAGEMENT40.00$118,056$0$10,995Yes (X)
RHONDA CONNOLLY
PRESIDENT10.00Yes (X)$0$0$0Yes (X)
ELIZABETH ASELAGE
VP-THRU 3/25; DIR-AS OF 3/252.00Yes (X)$0$0$0Yes (X)
MARK GRALEN
DIR-THRU 3/25; VP-AS OF 3/252.00$0$0$0Yes (X)
DAN LAZZARI
TREASURER2.00Yes (X)$0$0$0Yes (X)
ALISON REYNOLDS
SECRETARY2.00Yes (X)$0$0$0Yes (X)
SUSAN BERRY
DIRECTOR2.00$0$0$0Yes (X)
CHARLES BUCKLAR
DIRECTOR2.00$0$0$0Yes (X)
MICHAEL FINKEL
DIRECTOR2.00$0$0$0Yes (X)
LILLIAN ISABELLA
DIRECTOR - THRU 12/252.00$0$0$0Yes (X)
CHRISTINA LOVE
DIRECTOR2.00$0$0$0Yes (X)
DAVID MICKLE
DIRECTOR2.00$0$0$0Yes (X)
ADAM SHERMAN
DIRECTOR2.00$0$0$0Yes (X)
SARA TYE
DIRECTOR2.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$458,893TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$39,478TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K3IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Fundraising$1,115,095FundraisingAmt
All Other Contributions$1,366,763AllOtherContributionsAmt
Noncash Contributions$63,318NoncashContributionsAmt
Total Contributions$2,481,858TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescCONFERENCE FEESDesc
Business561499BusinessCd
Total Revenue Column$14,946TotalRevenueColumnAmt
Related Or Exempt Func Income$14,946RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$14,946TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$215,824TotalRevenueColumnAmt
Exclusion$215,824ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$650,869SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$588,356SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$62,513SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$62,513TotalRevenueColumnAmt
Exclusion$62,513ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$277,907FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$1,115,095ContriRptFundraisingEventAmt
Fundraising Direct Expenses$411,109FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$133,202TotalRevenueColumnAmt
Exclusion-$133,202ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmtExclusionExclusionAmt
RECRUITING FEES900099$28,375$28,375
REBATES900099$4,121$4,121
FieldValueIRS element (for citing)
Other Revenue Total$32,496OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,674,435TotalRevenueColumnAmt
Related Or Exempt Func Income$43,321RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$149,256ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$404,753TotalAmt
Program Services$404,753ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$54,262TotalAmt
Program Services$54,262ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$210,314TotalAmt
Program Services$126,189ProgramServicesAmt
Management And General$52,578ManagementAndGeneralAmt
Fundraising$31,547FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$435,682TotalAmt
Program Services$327,611ProgramServicesAmt
Management And General$10,392ManagementAndGeneralAmt
Fundraising$97,679FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$16,658TotalAmt
Program Services$12,143ProgramServicesAmt
Management And General$1,034ManagementAndGeneralAmt
Fundraising$3,481FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$46,544TotalAmt
Program Services$33,098ProgramServicesAmt
Management And General$4,099ManagementAndGeneralAmt
Fundraising$9,347FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$47,724TotalAmt
Program Services$33,006ProgramServicesAmt
Management And General$5,561ManagementAndGeneralAmt
Fundraising$9,157FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$3,407TotalAmt
Program Services$1,704ProgramServicesAmt
Management And General$851ManagementAndGeneralAmt
Fundraising$852FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$94,952TotalAmt
Management And General$94,952ManagementAndGeneralAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$20,037TotalAmt
Management And General$20,037ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$303,288TotalAmt
Program Services$247,815ProgramServicesAmt
Management And General$5,066ManagementAndGeneralAmt
Fundraising$50,407FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$47,958TotalAmt
Program Services$37,588ProgramServicesAmt
Management And General$2,689ManagementAndGeneralAmt
Fundraising$7,681FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$14,653TotalAmt
Program Services$9,048ProgramServicesAmt
Management And General$2,603ManagementAndGeneralAmt
Fundraising$3,002FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$80,261TotalAmt
Program Services$76,010ProgramServicesAmt
Management And General$2,039ManagementAndGeneralAmt
Fundraising$2,212FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$171,297TotalAmt
Program Services$171,297ProgramServicesAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$29,620TotalAmt
Program Services$14,810ProgramServicesAmt
Management And General$7,405ManagementAndGeneralAmt
Fundraising$7,405FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$12,378TotalAmt
Program Services$6,188ProgramServicesAmt
Management And General$3,095ManagementAndGeneralAmt
Fundraising$3,095FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtFundraisingFundraisingAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmt
CREDIT CARD FEES$23,868$23,868
ORGANIZATIONAL EXPENSES$12,164$3,041$6,082$3,041
DUES$1,800$225$1,350$225
BANK FEES$176$31$68$77

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$1,042TotalAmt
Program Services$857ProgramServicesAmt
Management And General$68ManagementAndGeneralAmt
Fundraising$117FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$2,032,838TotalAmt
Program Services$1,563,879ProgramServicesAmt
Management And General$215,812ManagementAndGeneralAmt
Fundraising$253,147FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$709,687BOYAmt
EOY$146,498EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$5,000BOYAmt
EOY$813,186EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$12,216BOYAmt
EOY$3,721EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
EOY$10,000EOYAmt

Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp

FieldValueIRS element (for citing)
BOY$429,113BOYAmt
EOY$567,292EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$119,648BOYAmt
EOY$179,821EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$148,100LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$41,961LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$135,759BOYAmt
EOY$106,139EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$3,799,589BOYAmt
EOY$4,254,573EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
BOY$100,000BOYAmt
EOY$100,000EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$5,311,012BOYAmt
EOY$6,181,230EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$51,780BOYAmt
EOY$64,437EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$199,977BOYAmt
EOY$160,369EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$105,000BOYAmt
EOY$126,004EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$356,757BOYAmt
EOY$350,810EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$4,923,821BOYAmt
EOY$5,799,986EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$30,434BOYAmt
EOY$30,434EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,954,255BOYAmt
EOY$5,830,420EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$5,311,012BOYAmt
EOY$6,181,230EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$641,597ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$234,568NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,676,954CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,253,786CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,513,280CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,050,617CurrentTaxYearMinus1YearAmt
Current Tax Year$2,481,858CurrentTaxYearAmt
Total$9,976,495TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,676,954CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,253,786CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,513,280CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,050,617CurrentTaxYearMinus1YearAmt
Current Tax Year$2,481,858CurrentTaxYearAmt
Total$9,976,495TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$750,718SubstantialContributorsTotAmt
Public Support Total170$9,225,777PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$81,203CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$81,652CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$103,854CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$148,048CurrentTaxYearMinus1YearAmt
Current Tax Year$215,824CurrentTaxYearAmt
Total$630,581TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus2 Years$5,000CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$26,786CurrentTaxYearMinus1YearAmt
Current Tax Year$4,121CurrentTaxYearAmt
Total$35,907TotalAmt
FieldValueIRS element (for citing)
Total Support$10,642,983TotalSupportAmt
Gross Receipts Rltd Activities$162,049GrossReceiptsRltdActivitiesAmt
Public Support CY1700.86680PublicSupportCY170Pct
Public Support PY1700.89270PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Form990 Schedule A Part VI Form990ScheduleAPartVIGrp

FieldValueIRS element (for citing)
Form And Line ReferenceSCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME:FormAndLineReferenceDesc
ExplanationMISCELLANEOUS INCOME - 2023 AMOUNT: $ 5,000. 2024 AMOUNT: $ 26,786. 2025 AMOUNT: $ 4,121.ExplanationTxt

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$148,100OtherCostOrOtherBasisAmt
Depreciation$41,961DepreciationAmt
Book Value$106,139BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$106,139TotalBookValueLandBuildingsAmt
Total Rev Etc Audited Fincl Stmt$3,072,036TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$234,568NetUnrealizedGainsInvstAmt
Other Revenue$183,070OtherRevenueAmt
Revenue Not Reported$417,638RevenueNotReportedAmt
Revenue Subtotal$2,654,398RevenueSubtotalAmt
Investment Expenses Not Incld$20,037InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$20,037RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$2,674,435TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$2,195,871TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included$183,070OtherExpensesIncludedAmt
Expenses Not Reported$183,070ExpensesNotReportedAmt
Expenses Subtotal$2,012,801ExpensesSubtotalAmt
Investment Expenses Not Incld2$20,037InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$20,037ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$2,032,838TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART XI, LINE 2D - OTHER ADJUSTMENTS:SPECIAL EVENTS EXPENSES NETTED WITH REVENUE 183,070.
PART XII, LINE 2D - OTHER ADJUSTMENTS:SPECIAL EVENTS EXPENSES NETTED WITH REVENUE 183,070.

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp

FieldValueIRS element (for citing)
RegionEUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMRegionTxt
Offices0OfficesCnt
Employee0EmployeeCnt
Type Of Activities ConductedGRANTS TO RECIPIENTSTypeOfActivitiesConductedTxt
Region Total Expenditures$54,262RegionTotalExpendituresAmt
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$54,262SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$54,262TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp

FieldValueIRS element (for citing)
RegionEUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMRegionTxt
Purpose Of GrantAI4PKU STUDY: ARTIFICIAL INTELLIGENCE FOR PKUPurposeOfGrantTxt
Cash Grant$54,262CashGrantAmt
Manner Of Cash DisbursementWIRE TRANSFERMannerOfCashDisbursementTxt
Non Cash Assistance$0NonCashAssistanceAmt
FieldValueIRS element (for citing)
Total501c3 Org0Total501c3OrgCnt
Total Other Org1TotalOtherOrgCnt
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationGRANT RECIPIENT WILL BE REQUIRED TO REPORT ON GRANT PROGRESS AT THE HALFWAY POINT AND COMPLETE A FINAL REPORT UPON GRANT COMPLETION.ExplanationTxt

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1LTL (NYC)Event1Nm
Gross Receipts Event1$1,015,074GrossReceiptsEvent1Amt
Charitable Contri Event1$841,261CharitableContriEvent1Amt
Gross Revenue Event1$173,813GrossRevenueEvent1Amt
Non Cash Prizes Event1$87,358NonCashPrizesEvent1Amt
Rent Facility Costs Event1$42,063RentFacilityCostsEvent1Amt
Food And Beverage Event1$53,360FoodAndBeverageEvent1Amt
Entertainment Event1$16,940EntertainmentEvent1Amt
Other Direct Expenses Event1$61,292OtherDirectExpensesEvent1Amt
Event2LTL (SAN DIEGO)Event2Nm
Gross Receipts Event2$377,928GrossReceiptsEvent2Amt
Charitable Contri Event2$273,834CharitableContriEvent2Amt
Gross Revenue Event2$104,094GrossRevenueEvent2Amt
Non Cash Prizes Event2$52,321NonCashPrizesEvent2Amt
Rent Facility Costs Event2$26,525RentFacilityCostsEvent2Amt
Food And Beverage Event2$35,000FoodAndBeverageEvent2Amt
Entertainment Event2$8,895EntertainmentEvent2Amt
Other Direct Expenses Event2$27,355OtherDirectExpensesEvent2Amt
Gross Receipts Total$1,393,002GrossReceiptsTotalAmt
Charitable Contributions Tot$1,115,095CharitableContributionsTotAmt
Gross Revenue Total Events$277,907GrossRevenueTotalEventsAmt
Non Cash Prizes Total Events$139,679NonCashPrizesTotalEventsAmt
Rent Fclty Costs Total Events$68,588RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events$88,360FoodAndBeverageTotalEventsAmt
Entertainment Total Events$25,835EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$88,647OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$411,109DirectExpenseSummaryEventsAmt
Net Income Summary-$133,202NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Recipient Table RecipientTable (8 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
MARYLAND ALLIANCE OF PKU FAMILIES INC
1173 RIDGE DRIVEPASADENAMD21122521879326501(C)(3)$10,098$0PKU RESEARCH
BOSTON CHILDREN'S HOSPITAL
300 LONGWOOD AVEBOSTONMA02115042774441501(C)(3)$71,394$0PKU RESEARCH
CALIFORNIA COALITION FOR PKU AND ALLIED DISORDERS
2310 HOMESTEAD RD STEC1LOS ALTOSCA94024942812295501(C)(3)$7,500$0PKU RESEARCH
EMORY UNIVERSITY SCHOOL OF MEDICINE
1510 CLIFTON ROAD NEATLANTAGA30322580566256501(C)(3)$50,000$0PKU RESEARCH
GEORGIA PKU CONNECT INC
POBOX 942492ATLANTAGA31141263602983501(C)(3)$7,500$0PKU RESEARCH
OREGON HEALTH & SCIENCE
3181 SW SAM JACKSON PARK RDPORTLANDOR972393098231352685501(C)(3)$169,344$0PKU RESEARCH
PKU ORGANIZATION OF ILLINOIS
POBOX 102PALATINEIL60078363320115501(C)(3)$8,531$0PKU RESEARCH
UNIVERSITY OF CALIFORNIA SAN DIEGO
9452 MEDICAL CENTER DRLA JOLLACA92037472452128115$80,000$0PKU RESEARCH
FieldValueIRS element (for citing)
Total501c3 Org8Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationEACH RESEARCH GRANTEE MUST PROVIDE A MID-TERM NARRATIVE REPORT AND A YEAR-END FINANCIAL REPORT TO NPKUA. ALL GRANTEES ARE REQUIRED TO ENTER INTO A GRANT AGREEMENT BETWEEN THE NPKUA AND THEIR UNIVERSITY OR ORGANIZATION. AFFILIATE ORGANIZATIONS ARE REQUIRED TO PREPARE A REQUEST FOR GRANT FUNDS THAT EXPLAINS THE PROJECT DESCRIPTION IN WHAT THE FUNDS WILL BE USED FOR. THIS REQUEST IS REVIEWED AND APPROVED BY THE ORGANIZATION. GRANTS FUNDS TO AFFILIATES ARE GIVEN OUT BASED ON THE ORGANIZATION'S BUDGET EACH YEAR.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Compensation SurveyYes (X)CompensationSurveyInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org0CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org0CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (2 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountBonus Related OrganizationsBonusRelatedOrganizationsAmtOther Compensation Filing OrgOtherCompensationFilingOrgAmtOther Compensation Rltd OrgsOtherCompensationRltdOrgsAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
CATHERINE WARREN
EXECUTIVE DIRECTOR$176,591$0$17,000$0$0$0$6,800$0$9,923$0$210,314$0$0$0
SUSAN GRAY
DIRECTOR OF DEVELOPMENT$142,246$0$5,000$0$0$0$5,481$0$6,279$0$159,006$0$0$0

Schedule M IRS990ScheduleM

Collectibles CollectiblesGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution2ContributionCnt
Noncash Contributions Rpt F990$3,736NoncashContributionsRptF990Amt
Method Of Determining RevenuesFMVMethodOfDeterminingRevenuesTxt

Other Non Cash Contri Table OtherNonCashContriTableGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
DescAUCTION ITEMSDesc
Contribution90ContributionCnt
Noncash Contributions Rpt F990$59,582NoncashContributionsRptF990Amt
Method Of Determining RevenuesFMVMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC Gifts0ReviewProcessUnusualNCGiftsInd
Third Parties UsedYes (1)ThirdPartiesUsedInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 32B:FormAndLineReferenceDesc
ExplanationTHE NPKUA HIRES 2 VENDORS TO ASSIST WITH FUNDRAISING GALA EVENTS (2 ANNUALLY). THE AUCTIONEER IS KEITH MCLANE OF KLM AUCTIONS AND THE AUCTION PROCESSING FIRM IS C2 AUCTIONS.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (7 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART III, LINE 2NPKUA HOSTED THE TRUEPKU INITIATIVE TO SHARE THE LIVED PKU EXPERIENCE WITH U.S. FOOD AND DRUG ADMINISTRATION (FDA) STAFF, PEOPLE WORKING IN LIFE SCIENCE COMPANIES, HEALTH CARE PROFESSIONALS AND ACADEMIC RESEARCHERS TO HELP SHAPE THE DEVELOPMENT OF NEW MEDICAL THERAPIES AND APPROACHES TO TREATING AND MONITORING PKU. AS PART OF THE EXTERNALLY-LED PATIENT-FOCUSED DRUG DEVELOPMENT (EL-PFDD) PROGRAM, THIS MEETING TOOK PLACE VIRTUALLY ON MAY 8, 2025 IN PARTNERSHIP WITH OTHER PKU-RELATED ORGANIZATIONS AND SPONSORS. THE VOICE OF THE PATIENT REPORT SUMMARIZES THE MEETING INSIGHTS, PERSONAL STORIES AND KEY THEMES SHARED THROUGHOUT THE FIVE-HOUR MEETING, INCLUDING POWERFUL QUOTES FROM COMMUNITY MEMBERS AND PERSPECTIVES GATHERED BEFORE, DURING AND AFTER THE EVENT. BOTH THE LIVE MEETING AND REPORT CAN BE FOUND AT WWW.NPKUA.ORG/TRUEPKU/.
FORM 990, PART VI, SECTION A, LINE 1ATHE EXECUTIVE COMMITTEE CONSISTS OF THE PRESIDENT, VICE PRESIDENT, SECRETARY, TREASURER, AND ANY OTHER ELECTED OFFICERS OF THE BOARD. THE EXECUTIVE COMMITTEE CAN NOT EXERCISE ANY POWERS OF THE BOARD THAT REQUIRE A SUPERMAJORITY VOTE AS DESCRIBED IN THE BYLAWS.
FORM 990, PART VI, SECTION B, LINE 11BTHE 990 WILL BE REVIEWED BY THE EXECUTIVE DIRECTOR AND FINANCE COMMITTEE, WHICH INCLUDES THE TREASURER. ONCE THEIR FEEDBACK IS CONSIDERED AND ALL QUESTIONS ARE CLOSED, THE FROM 990 IS PROVIDED TO THE FULL BOARD PRIOR TO FILING WITH THE IRS.
FORM 990, PART VI, SECTION B, LINE 12CANY CONFLICTS OF INTEREST FOR OFFICERS, DIRECTORS, AND KEY EMPLOYEES ARE REVIEWED ANNUALLY. IF A CONFLICT EXISTS, THE BOARD INDIVIDUAL MUST DISCLOSE ALL MATERIAL FACTS TO THE BOARD OR THE EXECUTIVE COMMITTEE, WHICH SHALL BE REFLECTED IN THE MINUTES OF THE MEETING. THE PERSON WITH A CONFLICT MAY RECUSE THEMSELF AT ANY TIME FROM INVOLVEMENT IN THE DISCUSSION OR DECISION IN WHICH A POTENTIAL CONFLICT OF INTEREST EXISTS.
FORM 990, PART VI, SECTION B, LINE 15COMPENSATION WAS DECIDED BY THE BOARD OF DIRECTORS AFTER REVIEWING COMPENSATION LEVELS OF OTHER SIMILAR ORGANIZATIONS. COMPENSATION FOR KEY EMPLOYEES IS DECIDED BY THE BOARD OF DIRECTORS AFTER REVIEWING COMPARABLES OF SIMILAR ORGANIZATIONS. THE PROCESS DESCRIBED HERE WAS LAST COMPLETED IN 2024.
FORM 990, PART VI, SECTION C, LINE 19THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE TO THE PUBLIC UPON REQUEST. NPKUA AUDITED FINANCIALS AND 990 ARE POSTED TO THE WEBSITE.
FORM 990, PART IX, LINE 11GCONTRACTED FEES: PROGRAM SERVICE EXPENSES 8,526. MANAGEMENT AND GENERAL EXPENSES 414. FUNDRAISING EXPENSES 4,123. TOTAL EXPENSES 13,063. RESEARCH & DEVELOPMENT: PROGRAM SERVICE EXPENSES 172,661. MANAGEMENT AND GENERAL EXPENSES 1,414. FUNDRAISING EXPENSES 14,068. TOTAL EXPENSES 188,143. DIRECTOR OF EVENTS: PROGRAM SERVICE EXPENSES 66,628. MANAGEMENT AND GENERAL EXPENSES 3,238. FUNDRAISING EXPENSES 32,216. TOTAL EXPENSES 102,082.