FANCONI CANCER FOUNDATION: Form 990, tax year 2019

View the entire original 990 at ProPublica ↗

Organization
FANCONI CANCER FOUNDATION (EIN 93-0995453)
Tax period
2019-01-01 to 2019-12-31
Filed
2020-09-21
IRS object ID
202012659349300016
Schema version
2019v5.1
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)
Return2020-09-21T12:29:12-05:00ReturnTs
Tax Period End2019-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN911663574PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1LARSON GROSS PLLCBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line12211 RIMLAND DR STE 422AddressLine1Txt
CityBELLINGHAMCityNm
State AbbreviationWAStateAbbreviationCd
ZIP98226ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2019-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN930995453EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1FANCONI ANEMIA RESEARCH FUND INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlFANCBusinessNameControlTxt
Phone5416874658PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11801 WILLAMETTE STREET NO 200AddressLine1Txt
CityEUGENECityNm
State AbbreviationORStateAbbreviationCd
ZIP97401ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonMARK PEARLPersonNm
Person TitleEXECUTIVE DIRECTORPersonTitleTxt
Phone5416874658PhoneNum
Signature2020-09-17SignatureDt

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonKEATON WERSEN-CPAPreparerPersonNm
PTINP01957642PTIN
Phone3607344280PhoneNum

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address69.7.45.162IPv4AddressTxt
FieldValueIRS element (for citing)
IP2020-09-21IPDt
IP Tm10:28:32IPTm
IP TimezonePDIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id8DA01FBEC17801E874DA3AF19D3B24A5C0948EECAtSubmissionCreationDeviceId
At Submission Filing Device IdA42CF0DC396FD3ECC76016B5CF3BA8EB65B327FEAtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2019TaxYr
Build TS2021-01-29 14:40:06ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerMARK QUINLANPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line11801 WILLAMETTE STREET NO 200AddressLine1Txt
CityEUGENECityNm
State AbbreviationORStateAbbreviationCd
ZIP97401ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$3,450,068GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.FANCONI.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1989FormationYr
Legal Domicile StateORLegalDomicileStateCd
Activity Or MissionTO FIND EFFECTIVE TREATMENTS AND A CURE FOR FANCONI ANEMIA AND TO PROVIDE EDUCATION AND SUPPORT SERVICES TO AFFECTED FAMILIES WORLDWIDE.ActivityOrMissionDesc
Voting Members Governing Body13VotingMembersGoverningBodyCnt
Voting Members Independent12VotingMembersIndependentCnt
Total Employee12TotalEmployeeCnt
Total Volunteers12TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$2,638,623PYContributionsGrantsAmt
CY Contributions Grants$3,213,829CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$142,793PYInvestmentIncomeAmt
CY Investment Income$187,667CYInvestmentIncomeAmt
PY Other Revenue$3,327PYOtherRevenueAmt
CY Other Revenue$48,572CYOtherRevenueAmt
PY Total Revenue$2,784,743PYTotalRevenueAmt
CY Total Revenue$3,450,068CYTotalRevenueAmt
PY Grants And Similar Paid$1,944,039PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$1,708,648CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$725,887PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$895,098CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$316,490CYTotalFundraisingExpenseAmt
PY Other Expenses$989,617PYOtherExpensesAmt
CY Other Expenses$1,120,089CYOtherExpensesAmt
PY Total Expenses$3,659,543PYTotalExpensesAmt
CY Total Expenses$3,723,835CYTotalExpensesAmt
PY Revenues Less Expenses-$874,800PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$273,767CYRevenuesLessExpensesAmt
Total Assets BOY$6,843,919TotalAssetsBOYAmt
Total Assets EOY$7,856,802TotalAssetsEOYAmt
Total Liabilities BOY$1,391,661TotalLiabilitiesBOYAmt
Total Liabilities EOY$2,006,127TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$5,452,258NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$5,850,675NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionTO FIND EFFECTIVE TREATMENTS AND A CURE FOR FANCONI ANEMIA AND TO PROVIDE EDUCATION AND SUPPORT SERVICES TO AFFECTED FAMILIES WORLDWIDE.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$2,438,823ExpenseAmt
Grant$1,701,578GrantAmt
DescRESEARCH - SINCE FARF WAS FOUNDED IN 1989, WE HAVE SUPPORTED MORE THAN $24 MILLION IN RESEARCH, SUPPORTING MORE THAN 230 RESEARCH GRANTS AT MORE THAN 74 CENTERS WORLDWIDE. EVERY YEAR WE HOST A SCIENTIFIC SYMPOSIUM, GATHERING OVER 200 FANCONI ANEMIA (FA) SCIENTISTS, RESEARCHERS, AND DOCTORS FROM AROUND THE WORLD TO PRESENT RESULTS FROM THEIR RESEARCH AND TO COLLABORATE WITH OTHERS IN THE FIELD. IN ADDITION, WE HOLD SMALL WORKSHOPS ON AREAS OF SPECIFIC INTEREST, SUCH AS HEAD AND NECK SQUAMOUS CELL CARCINOMA, IDENTIFICATION OF NEW DRUSG TO TREAT PATIENTS, AND GENE THERAPY. IN 2019, WE LAUNCHED A CLINICAL REGISTRY TO SUPPORT REASEARCH AND EXPEDITE NEW TREATMENTS.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$438,104ExpenseAmt
Grant$7,071GrantAmt
DescFAMILY SUPPORT AND EDUCATION SERVICES - CURRENTLY, THERE ARE NEARLY 1,000 FAMILIES WORLDWIDE THAT ARE REGISTERED WITH OUR ORGANIZATION AND AN UNDETERMINED NUMBER OF NEWLY DIAGNOSED PATIENTS. WHEN FACED WITH THIS FEVESTATING DIAGNOSIS, THEY LOOK TO FARF FOR SUPPORT. WE PRODUCE INFORMATIONAL PUBLICATIONS, INCLUDING OUR HANDBOOK "GUIDELINES FOR DIAGNOSIS AND MANAGEMENT", A FAMILY DIRECTORY, AND A RESOURCE GUIDE LISING ALL TREATMENT CENTERS AND DOCTORS WHO WORK FOR FA. WE ALSO ORGANIZE A WEEK-LONG CAMP FOR FAMILIES AFFECTED BY FA, WHERE WE BRING SCIENTISTS AND CLINICIANS TO PRESENT THE LASTEST RESEARCH AND TREATMENT DISCOVERIES. WE INCLUDE SUPPORT GROUPS FOR PARENTS AND PATIENTS, RECREATIONAL ACTIVITIES FOR CHILDREN, AND GIVE FAMILY MEMBERS AN OPPORTUNITY TO PARTICIPATE IN VARIOUS RESEARCH PROJECTS. IN ADDITION, WE HOLD AN ANNUAL FA ADULT MEETING IN AN EFFORT TO MEET THE SPECIAL NEEDS OF OUR GROWING ADULT POPULATION. FOR BOTH EVENTS, WE OFFER TRAVEL SCHOLARSHIPS FOR ATTENDEES.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$2,876,927TotalProgramServiceExpensesAmt
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 Equipment0ReportLandBuildingEquipmentInd
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 Activities0ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising Activities0FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To IndividualsYes (1)GrantsToIndividualsInd
Schedule J Required0ScheduleJRequiredInd
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 Contribution0DeductibleArtContributionInd
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
Employee12EmployeeCnt
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 Members13GoverningBodyVotingMembersCnt
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 Chapters0LocalChaptersInd
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 Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
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 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 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 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 FldWVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1THE ORGANIZATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone5416874658PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11801 WILLAMETTE STREET NO 200AddressLine1Txt
CityEUGENECityNm
State AbbreviationORStateAbbreviationCd
ZIP97401ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (15 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeInd
MARK PEARL
PRESIDENT5.00Yes (X)Yes (X)$0$0$0
ANDRE' HESSELS
VICE PRESIDENT5.00Yes (X)Yes (X)$0$0$0
SHARON SCHUMAN
SECRETARY5.00Yes (X)Yes (X)$0$0$0
ORION MARX
TREASURER5.00Yes (X)Yes (X)$0$0$0
LYNN FROHNMAYER
FOUNDER5.00Yes (X)$0$0$0
NANCY GOLDEN
BOARD MEMBER1.00Yes (X)$0$0$0
BILL MCCOREY
BOARD MEMBER1.00Yes (X)$0$0$0
RACHEL ALTMANN
BOARD MEMBER1.00Yes (X)$0$0$0
STELLA DAVIES
BOARD MEMBER1.00Yes (X)$0$0$0
AILEEN CARLOS
BOARD MEMBER1.00Yes (X)$0$0$0
JOHN CONNELLY
BOARD MEMBER1.00Yes (X)$0$0$0
LISA MINGO
BOARD MEMBER1.00Yes (X)$0$0$0
MARK QUINLAN
EXECUTIVE DIRECTOR40.00Yes (X)$114,333$0$2,000
ISIS SROKA
DIRECTOR OF SCIENTIFIC OPERATIONS40.00$105,889$0$2,000Yes (X)
SUDHIR BORGONHA
TRANSLATIONAL SCIENCE DIRECTOR40.00$112,915$0$2,000Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$333,137TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$6,000TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K3IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 K0TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
All Other Contributions$3,213,829AllOtherContributionsAmt
Noncash Contributions$85,898NoncashContributionsAmt
Total Contributions$3,213,829TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$187,667TotalRevenueColumnAmt
Exclusion$187,667ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescOTHER INCOMEDesc
Business900099BusinessCd
Total Revenue Column$48,572TotalRevenueColumnAmt
Exclusion$48,572ExclusionAmt
FieldValueIRS element (for citing)
Other Revenue Total$48,572OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$3,450,068TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$236,239ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$1,318,945TotalAmt
Program Services$1,318,945ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$49,703TotalAmt
Program Services$49,703ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$340,000TotalAmt
Program Services$340,000ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$339,137TotalAmt
Program Services$165,699ProgramServicesAmt
Management And General$103,478ManagementAndGeneralAmt
Fundraising$69,960FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$420,282TotalAmt
Program Services$205,346ProgramServicesAmt
Management And General$128,236ManagementAndGeneralAmt
Fundraising$86,700FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$12,408TotalAmt
Program Services$6,062ProgramServicesAmt
Management And General$3,786ManagementAndGeneralAmt
Fundraising$2,560FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$54,041TotalAmt
Program Services$26,403ProgramServicesAmt
Management And General$16,490ManagementAndGeneralAmt
Fundraising$11,148FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$69,230TotalAmt
Program Services$33,826ProgramServicesAmt
Management And General$21,123ManagementAndGeneralAmt
Fundraising$14,281FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$270TotalAmt
Management And General$270ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$16,750TotalAmt
Management And General$16,750ManagementAndGeneralAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$29,939TotalAmt
Management And General$29,939ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$16,222TotalAmt
Program Services$13,932ProgramServicesAmt
Management And General$673ManagementAndGeneralAmt
Fundraising$1,617FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$111,837TotalAmt
Program Services$18,592ProgramServicesAmt
Management And General$36,783ManagementAndGeneralAmt
Fundraising$56,462FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$4,563TotalAmt
Management And General$4,563ManagementAndGeneralAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$41,156TotalAmt
Management And General$41,156ManagementAndGeneralAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$751,256TotalAmt
Program Services$627,831ProgramServicesAmt
Management And General$60,435ManagementAndGeneralAmt
Fundraising$62,990FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmt
COMMUNICATION$55,381$55,381
EQUIPMENT$48,354$48,354
SUPPLIES$20,642$6,692$13,950
RECRUITMENT$2,976$2,976

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$20,743TotalAmt
Program Services$8,515ProgramServicesAmt
Management And General$1,456ManagementAndGeneralAmt
Fundraising$10,772FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$3,723,835TotalAmt
Program Services$2,876,927ProgramServicesAmt
Management And General$530,418ManagementAndGeneralAmt
Fundraising$316,490FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$105BOYAmt
EOY$111EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$2,947,264BOYAmt
EOY$3,266,882EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$30,282EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$3,810,565BOYAmt
EOY$4,425,640EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$85,985BOYAmt
EOY$133,887EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$6,843,919BOYAmt
EOY$7,856,802EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$43,301BOYAmt
EOY$134,628EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$1,348,360BOYAmt
EOY$1,871,499EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,391,661BOYAmt
EOY$2,006,127EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$4,082,514BOYAmt
EOY$4,309,159EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,369,744BOYAmt
EOY$1,541,516EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$5,452,258BOYAmt
EOY$5,850,675EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$6,843,919BOYAmt
EOY$7,856,802EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$273,767ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$672,184NetUnrlzdGainsLossesInvstAmt
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$3,378,398CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$3,096,737CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$3,262,131CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,638,623CurrentTaxYearMinus1YearAmt
Current Tax Year$3,213,829CurrentTaxYearAmt
Total$15,589,718TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,378,398CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$3,096,737CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$3,262,131CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,638,623CurrentTaxYearMinus1YearAmt
Current Tax Year$3,213,829CurrentTaxYearAmt
Total$15,589,718TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$4,992,869SubstantialContributorsTotAmt
Public Support Total170$10,596,849PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$5,693CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$82,382CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$122,924CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$142,793CurrentTaxYearMinus1YearAmt
Current Tax Year$187,667CurrentTaxYearAmt
Total$541,459TotalAmt
FieldValueIRS element (for citing)
Total Support$16,131,177TotalSupportAmt
Gross Receipts Rltd Activities$80,872GrossReceiptsRltdActivitiesAmt
Public Support CY1700.65690PublicSupportCY170Pct
Public Support PY1700.69100PublicSupportPY170Pct
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 D IRS990ScheduleD

FieldValueIRS element (for citing)
Total Book Value Land Buildings$0TotalBookValueLandBuildingsAmt
Total Rev Etc Audited Fincl Stmt$4,122,252TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$672,184NetUnrealizedGainsInvstAmt
Revenue Not Reported$672,184RevenueNotReportedAmt
Revenue Subtotal$3,450,068RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$3,450,068TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$3,723,835TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$3,723,835ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$3,723,835TotalExpensesPerForm990Amt

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records Maintained0GrantRecordsMaintainedInd
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$0SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$0TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (6 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMFANCONI ANEMIA RESEARCH$200,000CHECK
AUSTRALIAFANCONI ANEMIA RESEARCH$10,000CHECK
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMFANCONI ANEMIA RESEARCH$100,000CHECK
AUSTRALIAFANCONI ANEMIA RESEARCH$10,000CHECK
DOMINICAN REPUBLICFANCONI ANEMIA RESEARCH$10,000CHECK
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMFANCONI ANEMIA RESEARCH$10,000CHECK
FieldValueIRS element (for citing)
Total501c3 Org6Total501c3OrgCnt
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 III ACCOUNTING METHOD:FormAndLineReferenceDesc

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (7 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
CHILDRENS HOSPITAL CORPORATION
300 LONGWOOD AVEBOSTONMA02115042774441501(C)3$200,000CLINICAL TRIAL RESEARCH GRANT
CHILDREN'S HOSPITAL MEDICAL CENTER
3333 BURNET AVECINCINNATIOH45229310833936501(C)3$502,405RESEARCH GRANT
OREGON HEALTH AND SCIENCE UNIVERSITY
3181 SW SAM JACKSON PARK RDPORTLANDOR97239931176109170(C)1$119,286CONTRACTED PROJECT
ROCKEFELLER UNIVERSITY
1230 YORK AVENUENEW YORKNY10065131624158501(C)3$90,862RESEARCH GRANT
YALE UNIVERSITY
25 SCIENCE PARK 150 MUNSON STNEW HAVENCT06520060646973501(C)3$157,500RESEARCH GRANT
UNIVERSITY OF MINNESOTA
100 CHURCH ST ST SEMINNEAPOLISMN55455416007513501(C)3$237,457PROGRAM SUPPORT
CAMP SUNSHINE AT SEBAGO LAKE INC
35 ACADIA ROADCASCOME04015222582877501(C)3$20,000PROGRAM SUPPORT
FieldValueIRS element (for citing)
Total501c3 Org5Total501c3OrgCnt
Total Other Org1TotalOtherOrgCnt

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp (4 entries)

Grant TypeGrantTypeTxtRecipientRecipientCntCash GrantCashGrantAmt
SYMPOSIUM SCHOLARSHIPS59$29,903
SYMPOSIUM AND SCIENCE AWARDS8$3,401
CLINICAL TRIAL SCHOLARSHIPS4$9,328
OTHER PROGRAM SCHOLARSHIPS4$7,071

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationTHE ORGANIZATION COMPILES A GRANT FILE FOR EACH GRANT RECIPIENT THAT HOUSES THE GRANT APPLICATION, REVIEWS CONDUCTED BY OUTSIDE REVIEWERS, THE PROPOSAL REVIEW COMMITTEE'S REPORT, A CV FOR ALL OF THOSE PARTICIPATING IN THE PROJECT, AND A SIGNED ACCEPTANCE OF AWARD. THIS DOCUMENT MUST BE SIGNED BY THE PRINCIPAL INVESTIGATOR AND THE OFFICIAL SIGNING AUTHORITY OF THE INSTITUTION WHERE THE RESEARCH WILL BE PERFORMED. TO MONITOR THE USE OF FUNDS, FINANCIAL AND RESEARCH REPORTS ARE REQUIRED ON AN ANNUAL BASIS DURING THE LIFE OF THE GRANT AND REVIEWED BY THE EXECUTIVE DIRECTOR TO ENSURE FUNDS ARE BEING USED APPROPRIATELY IN ADDITION TO BEING REVIEWED BY THE PROPOSAL COMMITTEE AND THE BOARD.ExplanationTxt

Schedule M IRS990ScheduleM

Securities Closely Held Stock SecuritiesCloselyHeldStockGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution376ContributionCnt
Noncash Contributions Rpt F990$85,898NoncashContributionsRptF990Amt
Method Of Determining RevenuesFAIR MARKET VALUEMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC Gifts0ReviewProcessUnusualNCGiftsInd
Third Parties Used0ThirdPartiesUsedInd

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (4 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION B, LINE 11BTHE FORM 990 WILL BE PREPARED FOR A BOARD MEETING DURING THE YEAR AT WHICH TIME A FINAL DRAFT VERSION WILL BE SHARED WITH THE BOARD AND APPROVED BY VOTE PRIOR TO SUBMITTING TO THE IRS.
FORM 990, PART VI, SECTION B, LINE 12CON AN ANNUAL BASIS, BOARD MEMBERS STATE ANY REAL OR POTENTIAL CONFLICTS OF INTEREST ON A CONFLICT OF INTEREST DISCLOSURE FORM.
FORM 990, PART VI, SECTION B, LINE 15EXECUTIVE DIRECTOR COMPENSATION IS SET BY THE BOARD PRESIDENT AFTER REVIEWING SELF-CONDUCTED MARKET RESEARCH. EMPLOYEE COMPENSATION IS EVALUATED BY COLLECTING COMPARABLE DATA FROM NON-PROFIT, STATE, AND COUNTY SOURCES, AS WELL AS A WAGE ANALYSIS REVIEW BY INDEPENDENT PERSONS WHICH IS THEN USED TO FORMULATE WAGES BY THE EXECUTIVE DIRECTOR AND APPROVED BY THE EXECUTIVE COMMITTEE BEFORE IMPLEMENTATION.
FORM 990, PART VI, SECTION C, LINE 19WHEN GOVERNING DOCUMENTS OR THE CONFLICT OF INTEREST POLICY ARE REQUESTED, A COPY IS MAILED TO THE REQUESTING PARTY. THE ANNUAL FORM 990 AND AUDIT REPORT ARE ON THE ORGANIZATION'S WEBSITE AND COPIES ARE ALSO ISSUED WHEN REQUESTED.

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