STRATEGY STUDIO / NONPROFIT PEOPLE SEARCH

IMMUNE DEFICIENCY FOUNDATION: Form 990, tax year 2025

View the entire original 990 at ProPublica ↗

Organization
IMMUNE DEFICIENCY FOUNDATION (EIN 52-1214782)
Tax period
2025-01-01 to 2025-12-31
Filed
2026-07-20
IRS object ID
202642019349300419
Schema version
2025v4.0
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)
Return2026-07-20T10:35:04-04:00ReturnTs
Tax Period End2025-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN251644159PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1BROWN PLUSBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line17420 HAYWARD ROAD SUITE 101AddressLine1Txt
CityFREDERICKCityNm
State AbbreviationMDStateAbbreviationCd
ZIP21702ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2025-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN521214782EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1IMMUNE DEFICIENCY FOUNDATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlIMMUBusinessNameControlTxt
Phone4103216647PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line17550 TEAGUE ROAD SUITE 220AddressLine1Txt
CityHANOVERCityNm
State AbbreviationMDStateAbbreviationCd
ZIP21076ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonJOREY BERRYPersonNm
Person TitlePRESIDENT & CEOPersonTitleTxt
Phone4103216647PhoneNum
Signature2026-07-13SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonRYAN P HARSHMAN CPAPreparerPersonNm
PTINP01756011PTIN
Phone3016969449PhoneNum
Preparation2026-07-13PreparationDt
FieldValueIRS element (for citing)
Tax2025TaxYr
Build TS2025-03-06 01:10:19ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerJOREY BERRYPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line17550 TEAGUE ROADAddressLine1Txt
Address Line2SUITE 220AddressLine2Txt
CityHANOVERCityNm
State AbbreviationMDStateAbbreviationCd
ZIP21076ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$17,561,718GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.PRIMARYIMMUNE.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1980FormationYr
Legal Domicile StateDELegalDomicileStateCd
Activity Or MissionTHE IMMUNE DEFICIENCY FOUNDATION IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF PEOPLE AFFECTED BY PRIMARY IMMUNODEFICIENCY THROUGH FOSTERING A COMMUNITY EMPOWERED BY ADVOCACY, EDUCATION, AND RESEARCH.ActivityOrMissionDesc
Voting Members Governing Body14VotingMembersGoverningBodyCnt
Voting Members Independent14VotingMembersIndependentCnt
Total Employee46TotalEmployeeCnt
Total Volunteers603TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$9,567,648PYContributionsGrantsAmt
CY Contributions Grants$10,651,366CYContributionsGrantsAmt
PY Program Service Revenue$15,870PYProgramServiceRevenueAmt
CY Program Service Revenue$45,656CYProgramServiceRevenueAmt
PY Investment Income$548,184PYInvestmentIncomeAmt
CY Investment Income$707,576CYInvestmentIncomeAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$10,131,702PYTotalRevenueAmt
CY Total Revenue$11,404,598CYTotalRevenueAmt
PY Grants And Similar Paid$564,056PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$609,595CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$4,787,765PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$5,003,142CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$963,421CYTotalFundraisingExpenseAmt
PY Other Expenses$4,260,977PYOtherExpensesAmt
CY Other Expenses$2,764,332CYOtherExpensesAmt
PY Total Expenses$9,612,798PYTotalExpensesAmt
CY Total Expenses$8,377,069CYTotalExpensesAmt
PY Revenues Less Expenses$518,904PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$3,027,529CYRevenuesLessExpensesAmt
Total Assets BOY$18,802,131TotalAssetsBOYAmt
Total Assets EOY$23,311,148TotalAssetsEOYAmt
Total Liabilities BOY$1,362,276TotalLiabilitiesBOYAmt
Total Liabilities EOY$1,453,460TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$17,439,855NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$21,857,688NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionTHE IMMUNE DEFICIENCY FOUNDATION IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE FOR EVERY PERSON AFFECTED BY PRIMARY IMMUNODEFICIENCY. WE FOSTER A COMMUNITY THAT IS CONNECTED, ENGAGED, AND EMPOWERED THROUGH ADVOCACY, EDUCATION, AND RESEARCH.MissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$2,949,291ExpenseAmt
Grant$355,206GrantAmt
DescIMMUNE DEFICIENCY FOUNDATION PROVIDED EDUCATIONAL PROGRAMS AND SERVICES FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2025, APPROXIMATELY 34,030 INDIVIDUALS WERE PROVIDED WITH EDUCATION AND SUPPORT THROUGH PUBLICATIONS, WEBINARS, VIDEOS AND PODCAST EPISODES, GET CONNECTED GROUP MEETINGS, AND TEEN AND YOUNG ADULT ACTIVITIES. THERE WERE 2 MILLION WEBSITE VISITORS, OVER 480,000 VIEWS ON YOUTUBE AND 2,600 COMPROMISED DOCUMENTARY SCREENING REQUESTS. SINCE THE LAUNCH, MORE THAN 14,000 PEOPLE HAVE UTILIZED THE IMMUNE SYSTEM SELF-ASSESSMENT TOOL ON OUR WEBSITE.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$1,555,717ExpenseAmt
DescTHE PI COMMUNITY RELIES ON INDIVIDUAL ASSISTANCE INCLUDING BUT NOT LIMITED TO ANSWERING INSURANCE QUESTIONS, LOCATING A SPECIALIST IN THEIR AREA, FINDING TREATMENT INFORMATION, AND LEARNING MORE ABOUT THEIR DIAGNOSIS. OUR PATIENT ADVOCACY SPECIALISTS PROVIDED ANSWERS TO OVER 2,200 QUESTIONS FROM INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. THE ORGANIZATION ALSO WORKS AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES SUCH AS VACCINE ACCESS AND INSURANCE COVERAGE CHALLENGES, THAT IMPACT THOSE WHO ARE IMMUNOCOMPROMISED. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK, INCLUDING HEALTH ACCESS ADVOCATE VOLUNTEERS, INFORM POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. IN 2025, THERE WERE MORE THAN 3,650 LETTERS AND MESSAGES SENT TO LEGISLATORS AND EXECUTIVE OFFICIALS TO ENSURE THAT PEOPLE WITH PI CAN LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$1,363,676ExpenseAmt
Grant$254,139GrantAmt
Revenue$38,600RevenueAmt
DescTO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, THERE ARE SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING ATTENDING FOURTEEN MEDICAL CONFERENCES, PROVIDING INFORMATION, EDUCATION AND RESOURCES TO OVER 14,000 HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS CLINICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IN 2025 WE LAUNCHED AN ACCREDITED CONTINUING MEDICAL EDUCATION (CME) PROGRAM TO EQUIP HEALTHCARE PROFESSIONALS WITH EDUCATION AND STRATEGIES FOR EARLY PI DETECTION, PERSONALIZED CARE AND OVERCOMING ACCESS BARRIERS. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE RESEARCH GRANT PROGRAM FUNDED FOUR RESEARCH GRANTS FOR PI RELATED RESEARCH IN 2025, TOTALING OVER 200,000.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Revenue$7,056RevenueAmt
FieldValueIRS element (for citing)
Total Other Prog Srvc Revenue$7,056TotalOtherProgSrvcRevenueAmt
Total Program Service Expenses$5,868,684TotalProgramServiceExpensesAmt
Described In Section501c3Yes (true)DescribedInSection501c3Ind
Schedule B RequiredYes (true)ScheduleBRequiredInd
Political Campaign ActyfalsePoliticalCampaignActyInd
Lobbying ActivitiesYes (true)LobbyingActivitiesInd
Subject To Proxy TaxfalseSubjectToProxyTaxInd
Donor Advised FundfalseDonorAdvisedFundInd
Conservation EasementsfalseConservationEasementsInd
Collections Of ArtfalseCollectionsOfArtInd
Credit CounselingfalseCreditCounselingInd
Donor Rstr Or Quasi EndowmentsYes (true)DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (true)ReportLandBuildingEquipmentInd
Report Investments Other SecfalseReportInvestmentsOtherSecInd
Report Program Related InvstfalseReportProgramRelatedInvstInd
Report Other AssetsfalseReportOtherAssetsInd
Report Other LiabilitiesYes (true)ReportOtherLiabilitiesInd
Include FIN48 FootnotefalseIncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (true)IndependentAuditFinclStmtInd
Consolidated Audit Fincl StmtfalseConsolidatedAuditFinclStmtInd
School OperatingfalseSchoolOperatingInd
Foreign OfficefalseForeignOfficeInd
Foreign ActivitiesfalseForeignActivitiesInd
More Than5000 K To OrgfalseMoreThan5000KToOrgInd
More Than5000 K To IndividualsfalseMoreThan5000KToIndividualsInd
Professional FundraisingfalseProfessionalFundraisingInd
Fundraising ActivitiesfalseFundraisingActivitiesInd
Gaming ActivitiesfalseGamingActivitiesInd
Operate HospitalfalseOperateHospitalInd
Grants To OrganizationsYes (true)GrantsToOrganizationsInd
Grants To IndividualsYes (true)GrantsToIndividualsInd
Schedule J RequiredYes (true)ScheduleJRequiredInd
Tax Exempt BondsfalseTaxExemptBondsInd
Engaged In Excess Benefit TransfalseEngagedInExcessBenefitTransInd
PY Excess Benefit TransfalsePYExcessBenefitTransInd
Loan OutstandingfalseLoanOutstandingInd
Grant To Related PersonfalseGrantToRelatedPersonInd
Business Rln With Org MemfalseBusinessRlnWithOrgMemInd
Business Rln With Fam MemfalseBusinessRlnWithFamMemInd
Business Rln With35 Ctrl EntfalseBusinessRlnWith35CtrlEntInd
Deductible Non Cash ContrifalseDeductibleNonCashContriInd
Deductible Art ContributionfalseDeductibleArtContributionInd
Terminate OperationsfalseTerminateOperationsInd
Partial LiquidationfalsePartialLiquidationInd
Disregarded EntityfalseDisregardedEntityInd
Related EntityfalseRelatedEntityInd
Related Organization Ctrl EntfalseRelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd OrgfalseTrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted PrtshpfalseActivitiesConductedPrtshpInd
Schedule O RequiredYes (true)ScheduleORequiredInd
IRP Document19IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (true)BackupWthldComplianceInd
Employee46EmployeeCnt
Employment Tax Returns FiledYes (true)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over LimitfalseUnrelatedBusIncmOverLimitInd
Foreign Financial AccountfalseForeignFinancialAccountInd
Prohibited Tax Shelter TransfalseProhibitedTaxShelterTransInd
Taxable Party NotificationfalseTaxablePartyNotificationInd
Nondeductible ContributionsfalseNondeductibleContributionsInd
Quid Pro Quo ContributionsfalseQuidProQuoContributionsInd
Form8282 Property Disposed OffalseForm8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft CntrctfalseRcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft CntrctfalsePayPremiumsPrsnlBnftCntrctInd
Indoor Tanning ServicesfalseIndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht PymtfalseSubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst IncfalseSubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members14GoverningBodyVotingMembersCnt
Independent Voting Member14IndependentVotingMemberCnt
Family Or Business RlnfalseFamilyOrBusinessRlnInd
Delegation Of Mgmt DutiesfalseDelegationOfMgmtDutiesInd
Change To Org DocumentsfalseChangeToOrgDocumentsInd
Material Diversion Or MisusefalseMaterialDiversionOrMisuseInd
Members Or StockholdersfalseMembersOrStockholdersInd
Election Of Board MembersfalseElectionOfBoardMembersInd
Decisions Subject To ApprovafalseDecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (true)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (true)MinutesOfCommitteesInd
Officer Mailing AddressfalseOfficerMailingAddressInd
Local ChaptersfalseLocalChaptersInd
Form990 Provided To Gvrn BodyYes (true)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (true)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (true)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (true)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (true)WhistleblowerPolicyInd
Document Retention PolicyYes (true)DocumentRetentionPolicyInd
Compensation Process CEOYes (true)CompensationProcessCEOInd
Compensation Process OtherYes (true)CompensationProcessOtherInd
Investment In Joint VenturefalseInvestmentInJointVentureInd
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
States Where Copy Of Return Is FldCOStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldDEStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldDCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldHIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMEStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
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
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNMStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldRIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldUTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Other WebsiteYes (X)OtherWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

FieldValueIRS element (for citing)
PersonSARAH ROSEPersonNm
Phone4103216647PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line17550 TEAGUE ROADAddressLine1Txt
CityHANOVERCityNm
State AbbreviationMDStateAbbreviationCd
ZIP21076ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (21 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeIndIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
JOREY BERRY
PRESIDENT &40.00Yes (X)$335,604$0$56,876
AIMEE SIMPSON
CHIEF DEV. O40.00$162,151$0$22,272Yes (X)
SARAH ROSE
CFO40.00Yes (X)$154,436$0$26,921
TAMMY BLACK
CHIEF COMM.40.00$157,990$0$21,182Yes (X)
BRIAN LLOYD
CTO40.00$145,885$0$30,913Yes (X)
LYNN ALBIZO
PUB. POLICY40.00$148,985$0$21,932Yes (X)
ALISSA CREAMER
DIR OF EDU &40.00$139,446$0$24,512Yes (X)
JASON ANGELOS
FINANCE CHAI1.00$0$0$0Yes (X)
PETE ATHERTON
FUTURES CHAI1.00$0$0$0Yes (X)
COLLEEN DANSEREAU
TRUSTEE1.00$0$0$0Yes (X)
MARK DZWONCZYK
TRUSTEE1.00$0$0$0Yes (X)
DARCY GOTT
YOUNG ADULT1.00$0$0$0Yes (X)
CHARLENE GRABOWSKI
TRUSTEE1.00$0$0$0Yes (X)
SETH KAUFMAN
BOARD VICE C1.00Yes (X)$0$0$0Yes (X)
KATE SULLIVAN MD
MAC CHAIR1.00$0$0$0Yes (X)
ADRIAN MOLLO
TRUSTEE1.00$0$0$0Yes (X)
ANDY ROBINS
TRUSTEE1.00$0$0$0Yes (X)
STELLA SAFO
TRUSTEE1.00$0$0$0Yes (X)
TRACY A SHAW
BOARD CHAIR1.00Yes (X)$0$0$0Yes (X)
SONIA VOHNOUT
BOARD SECRET1.00Yes (X)$0$0$0Yes (X)
PETER WANG
TRUSTEE1.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$1,244,497TotalReportableCompFromOrgAmt
Total Other Compensation$204,608TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K4IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (true)TotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (4 entries)

Address Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCdServicesServicesDescCompensationCompensationAmtAddress Line2ContractorAddress/USAddress/AddressLine2Txt
FAEGRE DRINKER BIDDLE & REATH LLP
ONE LOGAN SQUAREPHILADELPHIAPA19103PUBLIC POLICY$165,602
PLENTY CONSULTING INC
712 E LASALLE AVESOUTH BENDIN46617CONSULTING$140,879
THE MT ROYAL PRINTING COMPANY
6310 BLAIR HILL LNBALTIMOREMD21209CONSULTING$109,888
NEVINS & ASSOCIATES
16A BEL AIR SOUTH PARKWAYBEL AIRMD21015CONSULTING$108,075SUITE 211
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K4CntrctRcvdGreaterThan100KCnt
All Other Contributions$10,651,366AllOtherContributionsAmt
Noncash Contributions$23,021NoncashContributionsAmt
Total Contributions$10,651,366TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
SURVEY INCOME541700$38,600$38,600
OTHER INCOME541900$7,056$7,056
FieldValueIRS element (for citing)
Total Program Service Revenue$45,656TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$535,773TotalRevenueColumnAmt
Exclusion$535,773ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$6,328,923SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$6,157,120SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$171,803SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$171,803TotalRevenueColumnAmt
Exclusion$171,803ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$11,404,598TotalRevenueColumnAmt
Related Or Exempt Func Income$45,656RelatedOrExemptFuncIncomeAmt
Exclusion$707,576ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$266,814TotalAmt
Program Services$266,814ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$342,781TotalAmt
Program Services$342,781ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$573,837TotalAmt
Program Services$319,236ProgramServicesAmt
Management And General$214,730ManagementAndGeneralAmt
Fundraising$39,871FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$3,581,698TotalAmt
Program Services$2,351,717ProgramServicesAmt
Management And General$762,660ManagementAndGeneralAmt
Fundraising$467,321FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$126,505TotalAmt
Program Services$79,736ProgramServicesAmt
Management And General$35,851ManagementAndGeneralAmt
Fundraising$10,918FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$410,366TotalAmt
Program Services$257,676ProgramServicesAmt
Management And General$117,593ManagementAndGeneralAmt
Fundraising$35,097FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$310,736TotalAmt
Program Services$202,123ProgramServicesAmt
Management And General$69,411ManagementAndGeneralAmt
Fundraising$39,202FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$11,614TotalAmt
Program Services$9,929ProgramServicesAmt
Management And General$925ManagementAndGeneralAmt
Fundraising$760FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$25,927TotalAmt
Program Services$22,165ProgramServicesAmt
Management And General$2,064ManagementAndGeneralAmt
Fundraising$1,698FundraisingAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$245,600TotalAmt
Program Services$245,600ProgramServicesAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$84,954TotalAmt
Management And General$84,954ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$636,325TotalAmt
Program Services$508,345ProgramServicesAmt
Management And General$70,228ManagementAndGeneralAmt
Fundraising$57,752FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$17,574TotalAmt
Program Services$5,678ProgramServicesAmt
Fundraising$11,896FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$83,601TotalAmt
Program Services$50,779ProgramServicesAmt
Management And General$21,342ManagementAndGeneralAmt
Fundraising$11,480FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$161,248TotalAmt
Program Services$137,849ProgramServicesAmt
Management And General$12,840ManagementAndGeneralAmt
Fundraising$10,559FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$101,519TotalAmt
Program Services$66,045ProgramServicesAmt
Management And General$20,525ManagementAndGeneralAmt
Fundraising$14,949FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$199,167TotalAmt
Program Services$166,498ProgramServicesAmt
Management And General$17,717ManagementAndGeneralAmt
Fundraising$14,952FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$417,432TotalAmt
Program Services$303,508ProgramServicesAmt
Management And General$20,856ManagementAndGeneralAmt
Fundraising$93,068FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$91,398TotalAmt
Program Services$70,847ProgramServicesAmt
Management And General$11,950ManagementAndGeneralAmt
Fundraising$8,601FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$40,094TotalAmt
Program Services$29,098ProgramServicesAmt
Management And General$5,802ManagementAndGeneralAmt
Fundraising$5,194FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
BANK FEES$254,475$166,625$50,723$37,127
DUES & SUBSCRIPTIONS$198,405$154,617$24,025$19,763
PRINTING & COPYING$82,182$38,754$76$43,352
POSTAGE & SHIPPING$72,937$45,413$692$26,832

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$39,880TotalAmt
Program Services$26,851ProgramServicesAmt
Fundraising$13,029FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$8,377,069TotalAmt
Program Services$5,868,684ProgramServicesAmt
Management And General$1,544,964ManagementAndGeneralAmt
Fundraising$963,421FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,395,606BOYAmt
EOY$2,553,798EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$2,942,049BOYAmt
EOY$2,996,437EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$83,166BOYAmt
EOY$1,171,105EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$218,864BOYAmt
EOY$349,427EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$249,760LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$80,371LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$187,238BOYAmt
EOY$169,389EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$13,010,733BOYAmt
EOY$15,171,541EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
BOY$114,192BOYAmt
EOY$40,642EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$850,283BOYAmt
EOY$858,809EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$18,802,131BOYAmt
EOY$23,311,148EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$298,983BOYAmt
EOY$431,121EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,063,293BOYAmt
EOY$1,022,339EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,362,276BOYAmt
EOY$1,453,460EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$16,554,151BOYAmt
EOY$19,441,998EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$885,704BOYAmt
EOY$2,415,690EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$17,439,855BOYAmt
EOY$21,857,688EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$18,802,131BOYAmt
EOY$23,311,148EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$3,027,529ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$1,390,304NetUnrlzdGainsLossesInvstAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or ReviewfalseAccountantCompileOrReviewInd
FS AuditedYes (true)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

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

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$9,152,968CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$8,654,145CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$8,657,179CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$9,567,648CurrentTaxYearMinus1YearAmt
Current Tax Year$10,651,366CurrentTaxYearAmt
Total$46,683,306TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$9,152,968CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$8,654,145CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$8,657,179CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$9,567,648CurrentTaxYearMinus1YearAmt
Current Tax Year$10,651,366CurrentTaxYearAmt
Total$46,683,306TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$19,997,802SubstantialContributorsTotAmt
Public Support Total170$26,685,504PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$286,433CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$299,863CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$398,737CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$551,898CurrentTaxYearMinus1YearAmt
Current Tax Year$535,773CurrentTaxYearAmt
Total$2,072,704TotalAmt
FieldValueIRS element (for citing)
Total Support$48,756,010TotalSupportAmt
Gross Receipts Rltd Activities$143,362GrossReceiptsRltdActivitiesAmt
Public Support CY1700.54730PublicSupportCY170Pct
Public Support PY1700.53530PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

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 C IRS990ScheduleC

Total Grassroots Lobbying TotalGrassrootsLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$144,426FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$396,458FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$540,884FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$7,836,185FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$8,377,069FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$568,853FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$142,213FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$2,213FilingOrganizationsTotalAmt
FieldValueIRS element (for citing)
Form4720 FiledYes (true)Form4720FiledInd

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$546,808CurrentYearMinus3Amt
Current Year Minus2$520,113CurrentYearMinus2Amt
Current Year Minus1$630,640CurrentYearMinus1Amt
Current Year$568,853CurrentYearAmt
Total$2,266,414TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$3,399,621LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$364,371CurrentYearMinus3Amt
Current Year Minus2$358,010CurrentYearMinus2Amt
Current Year Minus1$435,936CurrentYearMinus1Amt
Current Year$540,884CurrentYearAmt
Total$1,699,201TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$136,702CurrentYearMinus3Amt
Current Year Minus2$130,028CurrentYearMinus2Amt
Current Year Minus1$157,660CurrentYearMinus1Amt
Current Year$142,213CurrentYearAmt
Total$566,603TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$849,905GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$174,631CurrentYearMinus3Amt
Current Year Minus2$104,284CurrentYearMinus2Amt
Current Year Minus1$148,902CurrentYearMinus1Amt
Current Year$144,426CurrentYearAmt
Total$572,243TotalAmt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$8,836,236BeginningYearBalanceAmt
Contributions$315,000ContributionsAmt
Investment Earnings Or Losses$1,216,038InvestmentEarningsOrLossesAmt
End Year Balance$10,367,274EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$7,173,807BeginningYearBalanceAmt
Contributions$750,000ContributionsAmt
Investment Earnings Or Losses$912,429InvestmentEarningsOrLossesAmt
End Year Balance$8,836,236EndYearBalanceAmt

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$6,198,759BeginningYearBalanceAmt
Investment Earnings Or Losses$975,048InvestmentEarningsOrLossesAmt
End Year Balance$7,173,807EndYearBalanceAmt

CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$6,183,528BeginningYearBalanceAmt
Contributions$1,114,253ContributionsAmt
Investment Earnings Or Losses-$1,099,022InvestmentEarningsOrLossesAmt
End Year Balance$6,198,759EndYearBalanceAmt

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$5,483,828BeginningYearBalanceAmt
Investment Earnings Or Losses$699,700InvestmentEarningsOrLossesAmt
End Year Balance$6,183,528EndYearBalanceAmt
FieldValueIRS element (for citing)
Board Designated Balance EOY1.00000BoardDesignatedBalanceEOYPct
Endowments Held Unrelated OrgfalseEndowmentsHeldUnrelatedOrgInd
Endowments Held Related OrgfalseEndowmentsHeldRelatedOrgInd

Leasehold Improvements LeaseholdImprovementsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$213,957OtherCostOrOtherBasisAmt
Depreciation$47,079DepreciationAmt
Book Value$166,878BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$35,803OtherCostOrOtherBasisAmt
Depreciation$33,292DepreciationAmt
Book Value$2,511BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$169,389TotalBookValueLandBuildingsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)

DescDescAmtAmt
OPERATING LEASES$967,384
DEFERRED COMPENSATION$54,955
FieldValueIRS element (for citing)
Total Liability$1,022,339TotalLiabilityAmt
Total Rev Etc Audited Fincl Stmt$14,025,148TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$1,390,304NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$1,315,200DonatedServicesAndUseFcltsAmt
Revenue Not Reported$2,705,504RevenueNotReportedAmt
Revenue Subtotal$11,319,644RevenueSubtotalAmt
Investment Expenses Not Incld$84,954InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$84,954RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$11,404,598TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$9,607,315TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$1,315,200DonatedServicesUseFcltsAmt
Expenses Not Reported$1,315,200ExpensesNotReportedAmt
Expenses Subtotal$8,292,115ExpensesSubtotalAmt
Investment Expenses Not Incld2$84,954InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$84,954ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$8,377,069TotalExpensesPerForm990Amt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (8 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxtBusiness Name Line2RecipientBusinessName/BusinessNameLine2TxtAddress Line2USAddress/AddressLine2Txt
COLUMBIA UNIVERSITY
615 WEST 131ST ST MC 8741NEW YORKNY10027135598093501C3$50,000RESEARCH
ICAHN SCHOOL OF MEDICINE AT MOUNT
ONE GUSTAVE L LEVY PLACENEW YORKNY10029136171197501C3$50,000RESEARCHSINAI
THE REGENTS OF THE UNIVERSITY OF
10920 WILSHIRE BLVDLOS ANGELESCA90094956006143GOV$50,000RESEARCHCALIFORNIA LOS ANGELESSUITE 620
SEATTLE CHILDREN'S RESEARCH
PO BOX 5371 MS 818-FISEATTLEWA981455005911156519501C3$49,856RESEARCHINSTITUTE
THE JEFFREY MODELL FOUNDATION
780 THIRD AVENUENEW YORKNY10017133380237501C3$25,000SPONSORSHIP
JOHNS HOPKINS ALL CHILDRENS
3910 KESWICK ROADBALTIMOREMD21211590683252501C3$10,000RESEARCHHOSPITAL INCS BLDG 4300A
BLACK WOMENS HEALTH IMPERATIVE
384 NORTHYARDS BLVD NW BLDG 100ATLANTAGA30313581557556501C3$7,500SPONSORSHIP
NATIONAL PHARMACEUTICAL ASSOCIATION
10810 N TATUM BLVD SUITE 102-965PHOENIXAZ85028521084995501C6$7,500SPONSORSHIP
FieldValueIRS element (for citing)
Total501c3 Org7Total501c3OrgCnt
Total Other Org1TotalOtherOrgCnt

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp (3 entries)

Grant TypeGrantTypeTxtRecipientRecipientCntCash GrantCashGrantAmt
SCHOLARSHIPS250$330,881
HONORARIA28$11,400
RESEARCH STIPEND50$500

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceSCHEDULE I, PAGE 1, PART I, LINE 2FormAndLineReferenceDesc
ExplanationEACH GRANT APPLICATION IS REVIEWED BY A COMMITTEE USING NIH SCORING CRITERIA. ONCE THE GRANT IS AWARDED, A 6-MONTH FINANCIAL AND PROGRESS REPORT IS DUE AS IS A 12-MONTH FINAL REPORT, WITH FINAL DELIVERABLES/ABSTRACT OR PUBLICATION DUE WITHIN 2 YEARS.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Compensation CommitteeYes (X)CompensationCommitteeInd
Written Employment ContractYes (X)WrittenEmploymentContractInd
Compensation SurveyYes (X)CompensationSurveyInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance PaymentfalseSeverancePaymentInd
Supplemental Nonqual Rtr PlanYes (true)SupplementalNonqualRtrPlanInd
Equity Based Comp ArrngmfalseEquityBasedCompArrngmInd
Comp Based On Revenue Of Flng OrgfalseCompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related OrgsfalseCompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng OrgfalseCompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd OrgsfalseCompBsdNetEarnsRltdOrgsInd
Any Non Fixed PaymentsfalseAnyNonFixedPaymentsInd
Initial Contract ExceptionfalseInitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (7 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtBonus Filing OrganizationBonusFilingOrganizationAmountDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmt
JOREY BERRY
PRESIDENT & CEO$250,826$84,778$36,000$20,876$392,480
AIMEE SIMPSON
CHIEF DEV. OFFICER$159,051$3,100$6,603$15,669$184,423
SARAH ROSE
CFO$151,456$2,980$6,476$20,445$181,357
TAMMY BLACK
CHIEF COMM. OFFICER$155,050$2,940$6,353$14,829$179,172
BRIAN LLOYD
CTO$143,005$2,880$6,080$24,833$176,798
LYNN ALBIZO
PUB. POLICY OFFICER$146,185$2,800$5,992$15,940$170,917
ALISSA CREAMER
DIR OF EDU & COM SVC$136,846$2,600$5,815$18,697$163,958

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
SCHEDULE J, PAGE 1, PART I, LINE 4JOREY BERRY 0 25,500 0
SCHEDULE J, PART IIIAT PRESENT, ONLY THE CEO PARTICIPATES IN THE NONQUALIFIED DEFERRED COMPENSATION PLAN. ELIGIBILITY MAY BE EXTENDED TO OTHER MANAGEMENT OR HIGHLY COMPENSATED EMPLOYEES. THE ELIGIBLE EMPLOYEE(S) WOULD BE DETERMINED BY THE BOARD OR A COMMITTEE OF THE BOARD IN CONJUNCTION WITH THE PRESIDENT/CEO. THE POTENTIAL CONTRIBUTION AMOUNT IS DETERMIEND JUST PRIOR TO EACH BUDGET YEAR BY THE BOARD/BOARD COMMITTEE AND VOTED ON WITHIN THE BUDGET APPROVAL. AT THE END OF THAT YEAR, THE BOARD OR COMMITTEE DETERMINES THE EXACT AMOUNT TO ALLOW AND THAT AMOUNT IS TRANSFERRED TO THE PARTICIPANT'S ACCOUNT SHORTLY THEREAFTER.

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (9 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990 - ORGANIZATION'S MISSIONTHE IMMUNE DEFICIENCY FOUNDATION IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE FOR EVERY PERSON AFFECTED BY PRIMARY IMMUNODEFICIENCY. WE FOSTER A COMMUNITY THAT IS CONNECTED, ENGAGED, AND EMPOWERED THROUGH ADVOCACY, EDUCATION, AND RESEARCH.
FORM 990, PAGE 2, PART III, LINE 4BTHE PI COMMUNITY RELIES ON INDIVIDUAL ASSISTANCE INCLUDING BUT NOT LIMITED TO ANSWERING INSURANCE QUESTIONS, LOCATING A SPECIALIST IN THEIR AREA, FINDING TREATMENT INFORMATION, AND LEARNING MORE ABOUT THEIR DIAGNOSIS. OUR PATIENT ADVOCACY SPECIALISTS PROVIDED ANSWERS TO OVER 2,200 QUESTIONS FROM INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. THE ORGANIZATION ALSO WORKS AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES SUCH AS VACCINE ACCESS AND INSURANCE COVERAGE CHALLENGES, THAT IMPACT THOSE WHO ARE IMMUNOCOMPROMISED. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK, INCLUDING HEALTH ACCESS ADVOCATE VOLUNTEERS, INFORM POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. IN 2025, THERE WERE MORE THAN 3,650 LETTERS AND MESSAGES SENT TO LEGISLATORS AND EXECUTIVE OFFICIALS TO ENSURE THAT PEOPLE WITH PI CAN LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE.
FORM 990, PAGE 2, PART III, LINE 4CTO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, THERE ARE SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING ATTENDING FOURTEEN MEDICAL CONFERENCES, PROVIDING INFORMATION, EDUCATION AND RESOURCES TO OVER 14,000 HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS CLINICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IN 2025 WE LAUNCHED AN ACCREDITED CONTINUING MEDICAL EDUCATION (CME) PROGRAM TO EQUIP HEALTHCARE PROFESSIONALS WITH EDUCATION AND STRATEGIES FOR EARLY PI DETECTION, PERSONALIZED CARE AND OVERCOMING ACCESS BARRIERS. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE RESEARCH GRANT PROGRAM FUNDED FOUR RESEARCH GRANTS FOR PI RELATED RESEARCH IN 2025, TOTALING OVER 200,000.
FORM 990, PAGE 6, PART VI, LINE 11BTHE 990 IS REVIEWED BY THE CHIEF FINANCIAL OFFICER ONCE COMPLETED BY THE OUTSIDE CPA FIRM. ONCE THE CHIEF FINANCIAL OFFICER IS SATISFIED WITH THE ACCURACY, THE 990 IS THEN PASSED ON TO THE PRESIDENT & CEO FOR REVIEW. AFTER THAT LEVEL OF REVIEW IS COMPLETE, IT IS THEN PASSED ON TO THE FINANCE COMMITTEE FOR APPROVAL. ONCE THAT HAPPENS IT IS REVIEWED AND ONCE ACCURATE, APPROVED BY THE BOARD OF TRUSTEES.
FORM 990, PAGE 6, PART VI, LINE 12CEACH YEAR IDF REQUESTS THAT ALL BOARD OF TRUSTEE MEMBERS AND STAFF COMPLETE A CONFLICT OF INTEREST STATEMENT DISCLOSING ANY POTENTIAL CONFLICT THAT MAY EXIST. THESE ARE KEPT ON FILE IN A DIGITAL FILE. THE BOARD LIAISON/HR DISTRIBUTES THE STATEMENT ANNUALLY FOR SIGNATURES TO THE BOARD. THE BOARD LIAISON/HR, WOULD DISTRIBUTE TO ANY STAFF NECESSARY. THE BOARD LIAISON/HR WOULD REVIEW AND WOULD BRING IT TO THE EXECUTIVE COMMITTEE AND BOARD OF TRUSTEES IF THERE ARE CONFLICTS. ANY RESTRICTIONS, IF NECESSARY, WOULD BE MADE AT THE BOARD OF TRUSTEE OR PRESIDENT/CEO LEVEL, DEPENDING ON WHO/WHAT THE CONFLICT IS.
FORM 990, PAGE 6, PART VI, LINE 15ATHE PRESIDENT & CEO'S COMPENSATION IS REVIEWED AND DOCUMENTED BY THE EXECUTIVE COMMITTEE. THE COMMITTEE REVIEWS WEBSITES SUCH AS SALARY.COM AND/OR REVIEWS OF MATERIALS SUCH AS ASAE'S COMPENSATION AND BENEFITS STUDY BOOK, OR THE NATIONAL HEALTH COUNCILS COMPENSATION STUDY TO DETERMINE THE CORRECT SALARY FOR THE POSITION. THE COMPENSATION IS PRESENTED AND APPROVED BY THE FULL BOARD. THE EXECUTIVE COMMITTEE INFORMS THE PRESIDENT & CEO, HUMAN RESOURCES, AND ACCOUNTING.
FORM 990, PAGE 6, PART VI, LINE 15BFOR ALL KEY EMPLOYEES, AN ANNUAL REVIEW IS CONDUCTED BY THE EMPLOYEE'S SUPERVISOR. BASED ON THIS REVIEW, IT IS DETERMINED IF THE PERSON GETS AN ANNUAL INCREASE BEYOND THE COST OF LIVING (IF ANY ADJUSTMENT FOR COL IS GIVEN). REVIEW OF WEBSITES SUCH AS SALARY.COM AND/OR REVIEW OF MATERIALS SUCH AS ASAE'S COMPENSATION AND BENEFITS STUDY BOOK OR THE NATIONAL HEALTH COUNCILS COMPENSATION STUDY HELPS DETERMINE THE CORRECT SALARY FOR THE POSITION. IF THE SUPERVISOR APPROVES AN INCREASE, PAPERWORK IS DRAWN UP AND SUBMITTED TO THE PRESIDENT & CEO FOR APPROVAL. ONCE APPROVAL IS COMPLETE, HUMAN RESOURCES AND ACCOUNTING ARE INFORMED OF THE INCREASE. THE EMPLOYEE IS NOTIFIED AS WELL.
FORM 990, PAGE 6, PART VI, LINE 17KENTUCKY, MAINE, MARYLAND, MASSACHUSETTS, MICHIGAN, MINNESOTA, MISSISSIPPI, NEVADA, NEW HAMPSHIRE, NEW JERSEY, NEW MEXICO, NEW YORK, NORTH CAROLINA, NORTH DAKOTA, OHIO, OKLAHOMA, OREGON, PENNSYLVANIA, RHODE ISLAND, SOUTH CAROLINA, TENNESSEE, UTAH, VIRGINIA, WASHINGTON, WEST VIRGINIA, WISCONSIN
FORM 990, PAGE 6, PART VI, LINE 19THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. IN ADDITION, THE FINANCIAL STATEMENTS ARE AVAILABLE ON THE WEBSITE.