CURE SANFILIPPO FOUNDATION: Form 990, tax year 2022

View the entire original 990 at ProPublica ↗

Organization
CURE SANFILIPPO FOUNDATION (EIN 46-4322131)
Tax period
2022-01-01 to 2022-12-31
Filed
2023-11-14
IRS object ID
202343189349301209
Schema version
2022v5.0
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)
Return2023-11-14T05:56:19-08:00ReturnTs
Tax Period End2022-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN570957419PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1The Hobbs Group PABusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line11704 Laurel StreetAddressLine1Txt
CityColumbiaCityNm
State AbbreviationSCStateAbbreviationCd
ZIP29201ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2022-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN464322131EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1Cure Sanfilippo FoundationBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlCUREBusinessNameControlTxt
Phone8034130525PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO Box 6901AddressLine1Txt
CityColumbiaCityNm
State AbbreviationSCStateAbbreviationCd
ZIP29260ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonGlenn O'NeillPersonNm
Person TitlePresidentPersonTitleTxt
Signature2023-11-13SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstGlennPersonFirstNm
Person LastONeillPersonLastNm
FieldValueIRS element (for citing)
SSN999009999SSN
FieldValueIRS element (for citing)
IRS Responsible Prty Info CurrYes (true)IRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonWill Stevens CPAPreparerPersonNm
PTINP01208094PTIN
Phone8037990555PhoneNum

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

FieldValueIRS element (for citing)
Trusted Customer2TrustedCustomerCd
Authentication Assurance LevelAAL1AuthenticationAssuranceLevelCd
Identity Assurance LevelIAL1IdentityAssuranceLevelCd
Federated Assurance LevelFAL1FederatedAssuranceLevelCd
FieldValueIRS element (for citing)
Tax2022TaxYr
Build TS2023-04-26 12:10:37ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerGlenn O'NeillPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO Box 6901AddressLine1Txt
CityColumbiaCityNm
State AbbreviationSCStateAbbreviationCd
ZIP29260ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$3,470,418GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website Addresswww.CureSanfilippoFoundation.orgWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2013FormationYr
Legal Domicile StateSCLegalDomicileStateCd
Activity Or MissionTo advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo SyndromeActivityOrMissionDesc
Voting Members Governing Body6VotingMembersGoverningBodyCnt
Voting Members Independent6VotingMembersIndependentCnt
Total Employee4TotalEmployeeCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$2,078,776PYContributionsGrantsAmt
CY Contributions Grants$2,238,613CYContributionsGrantsAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$186,864PYInvestmentIncomeAmt
CY Investment Income$483,599CYInvestmentIncomeAmt
PY Other Revenue-$35,760PYOtherRevenueAmt
CY Other Revenue-$14,767CYOtherRevenueAmt
PY Total Revenue$2,229,880PYTotalRevenueAmt
CY Total Revenue$2,707,445CYTotalRevenueAmt
PY Grants And Similar Paid$1,963,579PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$1,633,999CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$445,653PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$460,741CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$124,351CYTotalFundraisingExpenseAmt
PY Other Expenses$177,106PYOtherExpensesAmt
CY Other Expenses$192,357CYOtherExpensesAmt
PY Total Expenses$2,586,338PYTotalExpensesAmt
CY Total Expenses$2,287,097CYTotalExpensesAmt
PY Revenues Less Expenses-$356,458PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$420,348CYRevenuesLessExpensesAmt
Total Assets BOY$10,337,575TotalAssetsBOYAmt
Total Assets EOY$9,625,770TotalAssetsEOYAmt
Total Liabilities EOY$21,192TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$10,337,575NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$9,604,578NetAssetsOrFundBalancesEOYAmt
MissionTo advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo SyndromeMissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$2,050,871ExpenseAmt
DescTo advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo SyndromeDesc
Total Program Service Expenses$2,050,871TotalProgramServiceExpensesAmt
Described In Section501c3Yes (true)DescribedInSection501c3Ind
Schedule B RequiredYes (true)ScheduleBRequiredInd
Political Campaign ActyfalsePoliticalCampaignActyInd
Lobbying ActivitiesfalseLobbyingActivitiesInd
Subject To Proxy TaxfalseSubjectToProxyTaxInd
Donor Advised FundfalseDonorAdvisedFundInd
Conservation EasementsfalseConservationEasementsInd
Collections Of ArtfalseCollectionsOfArtInd
Credit CounselingfalseCreditCounselingInd
Donor Rstr Or Quasi EndowmentsfalseDonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentfalseReportLandBuildingEquipmentInd
Report Investments Other SecfalseReportInvestmentsOtherSecInd
Report Program Related InvstfalseReportProgramRelatedInvstInd
Report Other AssetsfalseReportOtherAssetsInd
Report Other LiabilitiesfalseReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (true)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (true)IndependentAuditFinclStmtInd
Consolidated Audit Fincl StmtfalseConsolidatedAuditFinclStmtInd
School OperatingfalseSchoolOperatingInd
Foreign OfficefalseForeignOfficeInd
Foreign ActivitiesYes (true)ForeignActivitiesInd
More Than5000 K To OrgYes (true)MoreThan5000KToOrgInd
More Than5000 K To IndividualsfalseMoreThan5000KToIndividualsInd
Professional FundraisingfalseProfessionalFundraisingInd
Fundraising ActivitiesYes (true)FundraisingActivitiesInd
Gaming ActivitiesfalseGamingActivitiesInd
Operate HospitalfalseOperateHospitalInd
Grants To OrganizationsYes (true)GrantsToOrganizationsInd
Grants To IndividualsfalseGrantsToIndividualsInd
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
Info In Schedule O Part VYes (X)InfoInScheduleOPartVInd
IRP Document3IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (true)BackupWthldComplianceInd
Employee4EmployeeCnt
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
Form8282 Filed0Form8282FiledCnt
Rcv Fnds To Pay Prsnl Bnft CntrctfalseRcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft CntrctfalsePayPremiumsPrsnlBnftCntrctInd
Form8899 FiledindfalseForm8899Filedind
Form1098 C FiledfalseForm1098CFiledInd
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 Members6GoverningBodyVotingMembersCnt
Independent Voting Member6IndependentVotingMemberCnt
Family Or Business RlnYes (true)FamilyOrBusinessRlnInd
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 FldSCStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd

Books In Care Of Detail BooksInCareOfDetail

FieldValueIRS element (for citing)
PersonGlenn O'NeillPersonNm
Phone8034130525PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO Box 6901AddressLine1Txt
CityColumbiaCityNm
State AbbreviationSCStateAbbreviationCd
ZIP29260ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (9 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtAverage Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
Glenn O'Neill
Exe Dir/Pres50.000.00Yes (X)$135,200$0$24,548
Katie Walton
Vice President40.000.00Yes (X)$108,150$0$1,081
Cara O'Neill
Chief Science40.000.00Yes (X)$87,500$0$875
Ben Von Wong
Director2.000.00$7,500$0$0Yes (X)
Daniel Fraley
Board Chair2.000.00Yes (X)$0$0$0Yes (X)
Faith McAngus
Director2.000.00$0$0$0Yes (X)
Shelby Leonardi
Secretary2.000.00Yes (X)$0$0$0Yes (X)
Valerie Byers
Director2.000.00$0$0$0Yes (X)
Adam Shaywitz
Director2.000.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$338,350TotalReportableCompFromOrgAmt
Total Other Compensation$26,504TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K2IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (true)TotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Fundraising$246,024FundraisingAmt
All Other Contributions$1,992,589AllOtherContributionsAmt
Total Contributions$2,238,613TotalContributionsAmt
Total Program Service Revenue$0TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$118,758TotalRevenueColumnAmt
Related Or Exempt Func Income$118,758RelatedOrExemptFuncIncomeAmt

Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Royalties Revenue RoyaltiesRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Net Rental Income Or Loss NetRentalIncomeOrLossGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$1,081,729SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$716,888SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$364,841SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$364,841TotalRevenueColumnAmt
Related Or Exempt Func Income$364,841RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$29,537FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$246,024ContriRptFundraisingEventAmt
Fundraising Direct Expenses$46,085FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$16,548TotalRevenueColumnAmt

Net Income From Gaming NetIncomeFromGamingGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Net Income Or Loss NetIncomeOrLossGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescOther IncomeDesc
Total Revenue Column$1,781TotalRevenueColumnAmt
Related Or Exempt Func Income$1,781RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total$1,781OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,707,445TotalRevenueColumnAmt
Related Or Exempt Func Income$485,380RelatedOrExemptFuncIncomeAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$1,243,718TotalAmt
Program Services$1,243,718ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$390,281TotalAmt
Program Services$390,281ProgramServicesAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$330,850TotalAmt
Program Services$215,052ProgramServicesAmt
Management And General$49,628ManagementAndGeneralAmt
Fundraising$66,170FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$52,101TotalAmt
Program Services$33,866ProgramServicesAmt
Management And General$7,815ManagementAndGeneralAmt
Fundraising$10,420FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$49,141TotalAmt
Program Services$31,942ProgramServicesAmt
Management And General$7,371ManagementAndGeneralAmt
Fundraising$9,828FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$28,649TotalAmt
Program Services$18,622ProgramServicesAmt
Management And General$4,297ManagementAndGeneralAmt
Fundraising$5,730FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$18,048TotalAmt
Program Services$13,536ProgramServicesAmt
Management And General$4,512ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$17,680TotalAmt
Management And General$17,680ManagementAndGeneralAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Prof Fundraising FeesForServicesProfFundraising

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$42,276TotalAmt
Program Services$29,593ProgramServicesAmt
Fundraising$12,683FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$10,237TotalAmt
Program Services$6,654ProgramServicesAmt
Management And General$1,536ManagementAndGeneralAmt
Fundraising$2,047FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$9,822TotalAmt
Program Services$7,367ProgramServicesAmt
Management And General$2,455ManagementAndGeneralAmt

Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$9,976TotalAmt
Program Services$6,485ProgramServicesAmt
Management And General$1,496ManagementAndGeneralAmt
Fundraising$1,995FundraisingAmt

Interest InterestGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Payments To Affiliates PaymentsToAffiliatesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$2,172TotalAmt
Management And General$2,172ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
Program Expense$23,906$23,906
Web Service$20,520$15,390$5,130
Rent/Lease$10,509$6,830$1,577$2,102
Merchandise$8,941$8,941

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$18,270TotalAmt
Program Services$7,629ProgramServicesAmt
Management And General$6,206ManagementAndGeneralAmt
Fundraising$4,435FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$2,287,097TotalAmt
Program Services$2,050,871ProgramServicesAmt
Management And General$111,875ManagementAndGeneralAmt
Fundraising$124,351FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$962,628BOYAmt
EOY$1,127,606EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$827,602BOYAmt
EOY$790,274EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
EOY$25,453EOYAmt

Receivables From Officers Etc ReceivablesFromOfficersEtcGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Rcvbl From Disqualified Prsn RcvblFromDisqualifiedPrsnGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
EOY$3,871EOYAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$8,547,345BOYAmt
EOY$7,678,566EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$10,337,575BOYAmt
EOY$9,625,770EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
EOY$21,192EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$21,192EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$10,337,575BOYAmt
EOY$9,604,578EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$10,337,575BOYAmt
EOY$9,604,578EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$10,337,575BOYAmt
EOY$9,625,770EOYAmt
FieldValueIRS element (for citing)
Info In Schedule O Part XIYes (X)InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss$420,348ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$1,312,869NetUnrlzdGainsLossesInvstAmt
Investment Expense-$14,717InvestmentExpenseAmt
Other Changes In Net Assets$174,241OtherChangesInNetAssetsAmt
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$2,052,054CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,256,624CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,862,485CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,135,123CurrentTaxYearMinus1YearAmt
Current Tax Year$2,268,151CurrentTaxYearAmt
Total$9,574,437TotalAmt

Tax Rev Levied Orgnztnl Bnft170 TaxRevLeviedOrgnztnlBnft170Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Govt Furn Srvc Fclts Vl170 GovtFurnSrvcFcltsVl170Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$2,052,054CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,256,624CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,862,485CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,135,123CurrentTaxYearMinus1YearAmt
Current Tax Year$2,268,151CurrentTaxYearAmt
Total$9,574,437TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$0SubstantialContributorsTotAmt
Public Support Total170$9,574,437PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$31,628CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$127,390CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$233,157CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$186,864CurrentTaxYearMinus1YearAmt
Current Tax Year$483,599CurrentTaxYearAmt
Total$1,062,638TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus3 Years$10,483CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$7,985CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,436CurrentTaxYearMinus1YearAmt
Current Tax Year$1,781CurrentTaxYearAmt
Total$21,685TotalAmt
FieldValueIRS element (for citing)
Total Support$10,658,760TotalSupportAmt
Public Support CY1700.89830PublicSupportCY170Pct
Public Support PY1700.71350PublicSupportPY170Pct
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)
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$1,425,945TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst-$1,312,869NetUnrealizedGainsInvstAmt
Other Revenue$31,369OtherRevenueAmt
Revenue Not Reported-$1,281,500RevenueNotReportedAmt
Revenue Subtotal$2,707,445RevenueSubtotalAmt
Total Revenue Per Form990$2,707,445TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$2,333,182TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included$46,085OtherExpensesIncludedAmt
Expenses Not Reported$46,085ExpensesNotReportedAmt
Expenses Subtotal$2,287,097ExpensesSubtotalAmt
Total Expenses Per Form990$2,287,097TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (3 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Part X : FIN48 FootnoteThe foundation has received a determination letter from the IRS indicating it is a tax-exempt organization under Section 501(c)(3) of the IRC and is subject to federal income tax only on unrelated business income. Management is not aware of any transactions that would jeopardize their tax-exempt status. Accounting principles generally accepted in the USA require management to evaluate tax positions taken by the Foundation and to recognize tax liability (or asset) if the Foundation has taken an uncertain position that more likely than not would not be sustained upon examination by the IRS. Management has analyzed the tax position taken by the foundationand has concluded that as of December 31, 2022 & 2021, there are no uncertain positions taken or expected to be taken that would require recognition of a liability (or asset) or disclosure in the financial statements. The Foundation is subject to routine audits by taxing jurisdictions; however, there are currently no audits for any tax periods in progress. Management believes it is no longer subject to income tax examinations for fiscal years prior to 2018. US State jurisdictions have statutes of limitations that generally range from 3-5 years.
Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990Fundraising Expenses $46086 Investment Expenses $-14717 PPP Loan $0
Part XII, Line 2d: Other expenses and losses per audited F/SFundraising Expenses $46085

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)

RegionRegionTxtOfficesOfficesCntEmployeeEmployeeCntType Of Activities ConductedTypeOfActivitiesConductedTxtSpecific Services ProvidedSpecificServicesProvidedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
Europe00GrantsSee Schedule O$220,448
Australia00GrantsSee Schedule O$105,333
Middle East00GrantsSee Schedule O$22,500
FieldValueIRS element (for citing)
Subtotal Spent$348,281SubtotalSpentAmt
Total Spent$348,281TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (6 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtValuation Method UsedValuationMethodUsedDesc
Jerusalem, IsraSee Sch O$22,500Wire TransFMV
Melbourne, AustSee Sch O$50,000Wire TransFMV
Naples, ItalySee Sch O$140,250Wire TransFMV
Naples, ItalySee Sch O$42,000Wire TransFMV
Pozzuoli, ItalySee Sch O$80,198Wire TransFMV
Sydney, AustralSee Sch O$55,333Wire TransFMV
FieldValueIRS element (for citing)
Total Other Org6TotalOtherOrgCnt
Transfer To Foreign CorpYes (true)TransferToForeignCorpInd
Interest In Foreign TrustfalseInterestInForeignTrustInd
Foreign Corp OwnershipfalseForeignCorpOwnershipInd
Passive Foreign Investmest CofalsePassiveForeignInvestmestCoInd
Foreign PartnershipfalseForeignPartnershipInd
Boycott CountriesfalseBoycottCountriesInd

Schedule G IRS990ScheduleG

FieldValueIRS element (for citing)
Mail SolicitationsYes (X)MailSolicitationsInd
Email SolicitationsYes (X)EmailSolicitationsInd
In Person SolicitationsYes (X)InPersonSolicitationsInd
Agrmt Prof Fundraising ActyYes (true)AgrmtProfFundraisingActyInd
Licensed StatesSCLicensedStatesCd
Licensed StatesALLicensedStatesCd
Licensed StatesAKLicensedStatesCd
Licensed StatesARLicensedStatesCd
Licensed StatesCALicensedStatesCd
Licensed StatesCOLicensedStatesCd
Licensed StatesCTLicensedStatesCd
Licensed StatesFLLicensedStatesCd
Licensed StatesKSLicensedStatesCd
Licensed StatesKYLicensedStatesCd
Licensed StatesMELicensedStatesCd
Licensed StatesMDLicensedStatesCd
Licensed StatesMALicensedStatesCd
Licensed StatesMOLicensedStatesCd
Licensed StatesNVLicensedStatesCd
Licensed StatesNHLicensedStatesCd
Licensed StatesNMLicensedStatesCd
Licensed StatesNYLicensedStatesCd
Licensed StatesNDLicensedStatesCd
Licensed StatesOHLicensedStatesCd
Licensed StatesOKLicensedStatesCd
Licensed StatesORLicensedStatesCd
Licensed StatesPALicensedStatesCd
Licensed StatesRILicensedStatesCd
Licensed StatesUTLicensedStatesCd
Licensed StatesWALicensedStatesCd
Licensed StatesWVLicensedStatesCd
Licensed StatesDELicensedStatesCd
Licensed StatesGALicensedStatesCd
Licensed StatesHILicensedStatesCd
Licensed StatesMILicensedStatesCd
Licensed StatesMNLicensedStatesCd
Licensed StatesTNLicensedStatesCd
Licensed StatesWILicensedStatesCd

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1Golf/AuctionEvent1Nm
Gross Receipts Event1$149,625GrossReceiptsEvent1Amt
Charitable Contri Event1$138,405CharitableContriEvent1Amt
Gross Revenue Event1$11,220GrossRevenueEvent1Amt
Rent Facility Costs Event1$13,047RentFacilityCostsEvent1Amt
Event2Golf EventEvent2Nm
Gross Receipts Event2$33,000GrossReceiptsEvent2Amt
Charitable Contri Event2$25,080CharitableContriEvent2Amt
Gross Revenue Event2$7,920GrossRevenueEvent2Amt
Rent Facility Costs Event2$7,745RentFacilityCostsEvent2Amt
Other Events Total6OtherEventsTotalCnt
Gross Receipts Other Events$92,936GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$82,539CharitableContriOtherEventsAmt
Gross Revenue Other Events$10,397GrossRevenueOtherEventsAmt
Rent Fclty Costs Other Events$15,299RentFcltyCostsOtherEventsAmt
Food And Beverage Other Events$2,465FoodAndBeverageOtherEventsAmt
Oth Direct Expnss Other Events$7,529OthDirectExpnssOtherEventsAmt
Gross Receipts Total$275,561GrossReceiptsTotalAmt
Charitable Contributions Tot$246,024CharitableContributionsTotAmt
Gross Revenue Total Events$29,537GrossRevenueTotalEventsAmt
Rent Fclty Costs Total Events$36,091RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events$2,465FoodAndBeverageTotalEventsAmt
Oth Direct Expnss Total Events$7,529OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$46,085DirectExpenseSummaryEventsAmt
Net Income Summary-$16,548NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (7 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
Albert Einstein College of Me
1300 Morris Park AvenueBronxNY10461830621846$50,000$0Screen plus newborn screening
Clemson University
105 Sikes HallClemsonSC29634576000254$85,000$0Identifying Disease Modifiers in Dr
Lundquist Institute
1124 West Carson StreetTorranceCA90502952138184$71,059$0Open-label pilot study
Phoenix Nest
254 36th StBrooklynNY11232454742767$51,750$0Gene Therapy JLK-247 for regulatory
Regents of UC - San Diego
1995 University AvenueLa JollaCA94704943067788$128,958$0Novel Immune Deficient MPSIIIA
ReMotor Therapeutics
PO Box 12345DoralFL33122842453328$466,500$0Transplant MPSIII human neural syst
University of North Carolina
104 Airport Dr 2200Chapel HillNC27599566001393$386,635$0Systemic scAAV9
FieldValueIRS element (for citing)
Total501c3 Org4Total501c3OrgCnt
Total Other Org2TotalOtherOrgCnt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Severance PaymentfalseSeverancePaymentInd
Supplemental Nonqual Rtr PlanfalseSupplementalNonqualRtrPlanInd
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

FieldValueIRS element (for citing)
PersonGlenn O'NeillPersonNm
TitleExe Dir/PresTitleTxt
Base Compensation Filing Org$135,200BaseCompensationFilingOrgAmt
Deferred Compensation Flng Org$1,144DeferredCompensationFlngOrgAmt
Nontaxable Benefits Filing Org$23,404NontaxableBenefitsFilingOrgAmt
Total Compensation Filing Org$159,748TotalCompensationFilingOrgAmt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (22 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part VI, Section A, Line 2Glenn ONeill and Cara ONeill MD FAAP are husband and wife.
Form 990, Part VI, Section B, Line 11bAll Board Members have reviewed the Form 990.
Form 990, Part VI, Section B, Line 12cConflicts of interest are reviewed during Board Meetings
Form 990, Part VI, Section B, Line 15aThe Employment Committee is responsible for all hiring decisions, including compensation, benefits, job performance etc... The Board members make up the Employment Committee. The Committee reviews multiple 990's and other resources and comparable benchmarks to establish reasonable compensation for employees.
Form 990, Part VI, Section B, Line 15bThe Employment Committee reviews multiple 990's and other resources and comparable benchmarks to establish reasonable compensation for employees.
Form 990, Part VI, Section C, Line 19The organization's governing documents, policies, and financial statements are available upon request. The Form 990 is uploaded on the Guidestar website.
Form 990, Part XI, Line 9Cash to Accrual Adjustment = $174241
Antifungal immunity in patients with mucopolysaccharidosisTITLE: Antifungal immunity in patients with mucopolysaccharidosisAwardee: Hebrew University of JerusalemAMOUNT IN 2022: $22,500.00Date: May 10, 2022.
Blood-based biomarkers for Sanfilippo syndrome progression and treatmeTITLE: Blood-based biomarkers for Sanfilippo syndrome progression and treatmentAwardee: The Regents of the University of CaliforniaAMOUNT IN 2022: $128,958.00Date: June 10, 2022 and November 7, 2022.
Discovery and validation of translational biomarkers forTITLE: Discovery and validation of translational biomarkers for Sanfilippo childhood dementia Awardee: Monash UniversityAMOUNT IN 2022: $50,000.00Date: Payments made in September 6, 2022 and December 22,2022.
Exploring novel photobiomodulation parameters in an animal model of SaTITLE: Exploring novel photobiomodulation parameters in an animal model of Sanfilippo syndromeAwardee: University of Sydney and Flinders UniversityAMOUNT IN 2022: $55,333.00Date: January 27, 2022 and April 7, 2022.
Grant DetailThe following grants were provided:
Identifying Disease ModifiersTITLE: Identifying Disease Modifiers in Drosophila Models of MPSIIIAAwardee: Clemson UniversityAMOUNT IN 2022: $85,000.00Date: Payments made in May 12, 2022 and November 7, 2022.
In Vivo testing of FDA-approved drug combination for MPSIII TreatmentTITLE: The role of heparan sulfate and dopamine as disease' modifiers in Mucopolysaccharidosis type IIIAAwardee: The Telethon Institute of Genetics and Medicine (TIGEM)AMOUNT IN 2022: $80,197.50Date: January 14, 2022 and July 12, 2022.
Neuroprotective Peptides for TreatmentTITLE: Neuroprotective Peptides for Treatment of Sanfilippo DiseaseAwardee: Phoenix NestAMOUNT IN 2022: $51,750.00Date: Payments made in September 22, 2022.
Novel Immune Deficient MPSIIIA Mouse Model MaintenanceTITLE: Novel Immune Deficient MPSIIIA Mouse Model MaintenanceAwardee: UC Davis Institute for Regenerative CuresAmount in 2022: $3,816.00Date: August 18, 2022.
Open-Label Pilot Clinical Trial Study the effects of Anakinra in MucopTITLE: Open-Label Pilot Study of the effects of Anakinra in Mucopolysaccharidosis MPS) III (clinical trial)AWARDEE: The Lundquist InstituteAMOUNT IN 2022: $71,059.00Date: September 21, 2022.
Screen Plus Newborn ScreeningTITLE: Screen Plus Newborn ScreeningAwardee: Albert Einstein College of MedicineAMOUNT IN 2022: $50,000.00Date: Payments made in March 8, 2022 and July 26, 2022.
Strengthening the rationale for the use of the "molecular tweezer" CLRTITLE: Strengthening the rationale for the use of the "molecular tweezer" CLR01 in the treatment of Sanfilippo syndromeAWARDEE: Ceinge BiotechAMOUNT IN 2022: $56,250.00DATE: July 14, 2022
Systemic scAAV9-mCMV-hSGSH geneTITLE: Systemic scAAV9-mCMV-hSGSH gene delivery for treating MPSAwardee: Office of Sponsored Research University of North CarolinaAMOUNT IN 2022: $386,635.00Date: Payments made in December 15, 2022.
Targeting Heparan Sulfate Proteoglycans as a Novel Therapeutic StrategTITLE: Targeting Heparan Sulfate Proteoglycans as a Novel Therapeutic Strategy for Sanfilippo diseasesAwardee: University of Naples Federico IIAMOUNT IN 2022: $126,000.00Date: January 26, 2022 and December 9, 2022.
Transplant MPSIII Human Neural Stem CellsTITLE: Transplant MPSIIA human neural stem cells engineered to overexpress and secrete SGSHAwardee: ReMotor TherapeuticsAMOUNT IN 2022: 466,500.00Date: Payments made in September 6, 2022.

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