CURE SANFILIPPO FOUNDATION: Form 990, tax year 2020

View the entire original 990 at ProPublica ↗

Organization
CURE SANFILIPPO FOUNDATION (EIN 46-4322131)
Tax period
2020-01-01 to 2020-12-31
Filed
2021-11-15
IRS object ID
202103199349301975
Schema version
2020v4.0
Note
A later return for the same period supersedes this one.
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)
Return2021-11-15T06:01:12-08:00ReturnTs
Tax Period End2020-12-31TaxPeriodEndDt

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 Begin2020-01-01TaxPeriodBeginDt

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
Signature2021-11-15SignatureDt
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

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)
Tax2020TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

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$2,483,207GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website Addresswww.curesff.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 Body7VotingMembersGoverningBodyCnt
Voting Members Independent7VotingMembersIndependentCnt
Total Employee4TotalEmployeeCnt
Total Volunteers120TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$1,211,874PYContributionsGrantsAmt
CY Contributions Grants$1,840,504CYContributionsGrantsAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$127,390PYInvestmentIncomeAmt
CY Investment Income$233,157CYInvestmentIncomeAmt
PY Other Revenue$6,534PYOtherRevenueAmt
CY Other Revenue$9,590CYOtherRevenueAmt
PY Total Revenue$1,345,798PYTotalRevenueAmt
CY Total Revenue$2,083,251CYTotalRevenueAmt
PY Grants And Similar Paid$676,206PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$2,546,156CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$401,485PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$432,175CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$130,644CYTotalFundraisingExpenseAmt
PY Other Expenses$186,207PYOtherExpensesAmt
CY Other Expenses$161,959CYOtherExpensesAmt
PY Total Expenses$1,263,898PYTotalExpensesAmt
CY Total Expenses$3,140,290CYTotalExpensesAmt
PY Revenues Less Expenses$81,900PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$1,057,039CYRevenuesLessExpensesAmt
Total Assets BOY$10,749,584TotalAssetsBOYAmt
Total Assets EOY$10,163,332TotalAssetsEOYAmt
Total Liabilities EOY$63,451TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$10,749,584NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$10,099,881NetAssetsOrFundBalancesEOYAmt
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$2,910,251ExpenseAmt
DescTo advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo SyndromeDesc
Total Program Service Expenses$2,910,251TotalProgramServiceExpensesAmt
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 LiabilitiesYes (true)ReportOtherLiabilitiesInd
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 RequiredfalseScheduleJRequiredInd
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 Document4IRPDocumentCnt
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 Members7GoverningBodyVotingMembersCnt
Independent Voting Member7IndependentVotingMemberCnt
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
Upon RequestYes (X)UponRequestInd

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 (10 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtAverage Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
Glenn O'Neill
Executive Dir.50.000.00Yes (X)$133,211$0$0
Katie Walton
Vice President40.000.00Yes (X)$106,847$0$0
Cara O'Neill
Chief Science25.000.00Yes (X)$78,230$0$0
Daniel Fraley
Board Chair1.000.00Yes (X)$0$0$0Yes (X)
Rachel Best
Director1.000.00$0$0$0Yes (X)
Faith McAngus
Director1.000.00$0$0$0Yes (X)
Shelby Leonardi
Secretary1.000.00Yes (X)$0$0$0Yes (X)
Valerie Byers
Director1.000.00$0$0$0Yes (X)
Ben Von Wong
Director1.000.00$0$0$0Yes (X)
Adam Shaywitz
Director1.000.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$318,288TotalReportableCompFromOrgAmt
Indiv Rcvd Greater Than100 K2IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KfalseTotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Fundraising$278,176FundraisingAmt
All Other Contributions$1,562,328AllOtherContributionsAmt
Total Contributions$1,840,504TotalContributionsAmt
Total Program Service Revenue$0TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$231,496TotalRevenueColumnAmt
Related Or Exempt Func Income$231,496RelatedOrExemptFuncIncomeAmt

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$381,241SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$379,580SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$1,661SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,661TotalRevenueColumnAmt
Related Or Exempt Func Income$1,661RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$21,981FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$278,176ContriRptFundraisingEventAmt
Fundraising Direct Expenses$20,376FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,605TotalRevenueColumnAmt

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)
DescBillable Expenditure RevDesc
Total Revenue Column$7,985TotalRevenueColumnAmt
Related Or Exempt Func Income$7,985RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total$7,985OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,083,251TotalRevenueColumnAmt
Related Or Exempt Func Income$241,142RelatedOrExemptFuncIncomeAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$2,520,506TotalAmt
Program Services$2,520,506ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$25,650TotalAmt
Program Services$25,650ProgramServicesAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$318,288TotalAmt
Program Services$206,887ProgramServicesAmt
Management And General$47,743ManagementAndGeneralAmt
Fundraising$63,658FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$51,147TotalAmt
Program Services$33,246ProgramServicesAmt
Management And General$7,672ManagementAndGeneralAmt
Fundraising$10,229FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$36,291TotalAmt
Program Services$23,589ProgramServicesAmt
Management And General$5,444ManagementAndGeneralAmt
Fundraising$7,258FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$26,449TotalAmt
Program Services$17,192ProgramServicesAmt
Management And General$3,967ManagementAndGeneralAmt
Fundraising$5,290FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$19,981TotalAmt
Program Services$14,986ProgramServicesAmt
Management And General$4,995ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$13,025TotalAmt
Management And General$13,025ManagementAndGeneralAmt

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$1,147TotalAmt
Management And General$1,147ManagementAndGeneralAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$36,951TotalAmt
Program Services$25,866ProgramServicesAmt
Fundraising$11,085FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$8,060TotalAmt
Program Services$5,239ProgramServicesAmt
Management And General$1,209ManagementAndGeneralAmt
Fundraising$1,612FundraisingAmt

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$11,149TotalAmt
Program Services$8,362ProgramServicesAmt
Management And General$2,787ManagementAndGeneralAmt

Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

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)

DescDescTotalTotalAmtFundraisingFundraisingAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmt
Events$19,247$19,247
Rent/Lease$10,500$2,100$6,825$1,575
Supplies$10,291$2,058$6,689$1,544
Web Service$7,139$5,354$1,785

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$22,297TotalAmt
Program Services$9,860ProgramServicesAmt
Management And General$4,330ManagementAndGeneralAmt
Fundraising$8,107FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$3,140,290TotalAmt
Program Services$2,910,251ProgramServicesAmt
Management And General$99,395ManagementAndGeneralAmt
Fundraising$130,644FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$480,676BOYAmt
EOY$759,032EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$2,992,715BOYAmt
EOY$1,427,017EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

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$0EOYAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$7,276,193BOYAmt
EOY$7,977,283EOYAmt

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$10,749,584BOYAmt
EOY$10,163,332EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
EOY$63,451EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$63,451EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$10,749,584BOYAmt
EOY$10,099,881EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$10,749,584BOYAmt
EOY$10,099,881EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$10,749,584BOYAmt
EOY$10,163,332EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$1,057,039ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$417,310NetUnrlzdGainsLossesInvstAmt
Investment Expense-$9,462InvestmentExpenseAmt
Prior Period Adjustments-$512PriorPeriodAdjustmentsAmt
Method Of Accounting CashYes (X)MethodOfAccountingCashInd
Accountant Compile Or ReviewYes (true)AccountantCompileOrReviewInd

Acct Compile Or Review Basis AcctCompileOrReviewBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
FS AuditedfalseFSAuditedInd
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$636,440CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,515,412CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,052,054CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,256,624CurrentTaxYearMinus1YearAmt
Current Tax Year$1,862,485CurrentTaxYearAmt
Total$7,323,015TotalAmt

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$636,440CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,515,412CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,052,054CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,256,624CurrentTaxYearMinus1YearAmt
Current Tax Year$1,862,485CurrentTaxYearAmt
Total$7,323,015TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$0SubstantialContributorsTotAmt
Public Support Total170$7,323,015PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,521CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,943,703CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$31,628CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$127,390CurrentTaxYearMinus1YearAmt
Current Tax Year$233,157CurrentTaxYearAmt
Total$3,337,399TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$791CurrentTaxYearMinus4YearsAmt
Total$791TotalAmt
FieldValueIRS element (for citing)
Total Support$10,661,205TotalSupportAmt
Gross Receipts Rltd Activities$18,468GrossReceiptsRltdActivitiesAmt
Public Support CY1700.68690PublicSupportCY170Pct
Public Support PY1700.66940PublicSupportPY170Pct
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

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescPPP LoanDesc
Amt$63,451Amt
FieldValueIRS element (for citing)
Total Liability$63,451TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$2,511,475TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$417,310NetUnrealizedGainsInvstAmt
Other Revenue$10,914OtherRevenueAmt
Revenue Not Reported$428,224RevenueNotReportedAmt
Revenue Subtotal$2,083,251RevenueSubtotalAmt
Total Revenue Per Form990$2,083,251TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$3,160,666TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included$20,376OtherExpensesIncludedAmt
Expenses Not Reported$20,376ExpensesNotReportedAmt
Expenses Subtotal$3,140,290ExpensesSubtotalAmt
Total Expenses Per Form990$3,140,290TotalExpensesPerForm990Amt

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, 2020 & 2019, 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 2016. 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 $20376 Investment Expenses $-9462
Part XII, Line 2d: Other expenses and losses per audited F/SFundraising Expenses $20376

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)

RegionRegionTxtOfficesOfficesCntEmployeeEmployeeCntType Of Activities ConductedTypeOfActivitiesConductedTxtSpecific Services ProvidedSpecificServicesProvidedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
Europe00GrantsSee Schedule O$22,000
Australia00GrantsSee Schedule O$3,650
FieldValueIRS element (for citing)
Subtotal Spent$25,650SubtotalSpentAmt
Total Spent$25,650TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtValuation Method UsedValuationMethodUsedDesc
Clayton, AustraSee Sch O$3,650Wire TransFMV
Pozzuoli, ItalySee Sch O$22,000Wire TransFMV
FieldValueIRS element (for citing)
Total501c3 Org1Total501c3OrgCnt
Total Other Org1TotalOtherOrgCnt
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)
Event1Trivia GalaEvent1Nm
Gross Receipts Event1$134,035GrossReceiptsEvent1Amt
Charitable Contri Event1$131,200CharitableContriEvent1Amt
Gross Revenue Event1$2,835GrossRevenueEvent1Amt
Entertainment Event1$1,489EntertainmentEvent1Amt
Other Direct Expenses Event1$254OtherDirectExpensesEvent1Amt
Event2Cure for Carson GolfEvent2Nm
Gross Receipts Event2$51,695GrossReceiptsEvent2Amt
Charitable Contri Event2$41,039CharitableContriEvent2Amt
Gross Revenue Event2$10,656GrossRevenueEvent2Amt
Rent Facility Costs Event2$8,894RentFacilityCostsEvent2Amt
Other Events Total8OtherEventsTotalCnt
Gross Receipts Other Events$114,427GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$105,937CharitableContriOtherEventsAmt
Gross Revenue Other Events$8,490GrossRevenueOtherEventsAmt
Rent Fclty Costs Other Events$6,174RentFcltyCostsOtherEventsAmt
Entertainment Other Events$900EntertainmentOtherEventsAmt
Oth Direct Expnss Other Events$2,665OthDirectExpnssOtherEventsAmt
Gross Receipts Total$300,157GrossReceiptsTotalAmt
Charitable Contributions Tot$278,176CharitableContributionsTotAmt
Gross Revenue Total Events$21,981GrossRevenueTotalEventsAmt
Rent Fclty Costs Total Events$15,068RentFcltyCostsTotalEventsAmt
Entertainment Total Events$2,389EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$2,919OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$20,376DirectExpenseSummaryEventsAmt
Net Income Summary$1,605NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (8 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
Lundquist Institute
1124 West Carson StreetTorranceCA90502952138184$322,463$0Open-label pilot study
Phoenix Nest
254 36th StBrooklynNY11232$379,539$0Gene Therapy for Sanfilippo Type C
Regents of UC - San Diego
1995 University AvenueLa JollaCA94704946036494$47,795$0Evaluation of substrate recovery th
ReMotor Therapeutics
PO Box 12345DoralFL33122$1,400,500$0Transplant MPSIII human neural syst
Research Triangle Institute
PO Box 900002RaleighNC27675560686338$15,332$0Caregiver Preference Study
TEGA Therapeutics
102 General Atomics Ct G02San DiegoCA92121$200,000$0MPSIII Enzyme Replacement Project
UNC - Chapel Hill
104 Airport Dr 2200Chapel HillNC27599566001393$108,177$0Pre-clinical work for scAAV9 gene d
University of North Carolina
104 Airport Dr 2200Chapel HillNC27599566001393$46,700$0Facilitate and enhance the CNS entr
FieldValueIRS element (for citing)
Total501c3 Org0Total501c3OrgCnt
Total Other Org8TotalOtherOrgCnt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (17 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, EtGlenn ONeill and Cara ONeill MD FAAP are husband and wife.
Form 990, Part VI, Line 11b: Form 990 Review ProcessAll Board Members have reviewed the Form 990.
Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of ConflictsConflicts of interest are reviewed during Board Meetings
Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top ManagementThe 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, Line 15b: Compensation Review and Approval Process for Officers and Key EmployeesThe Employment Committee reviews multiple 990's and other resources and comparable benchmarks to establish reasonable compensation for employees.
Form 990, Part VI, Line 19: Other Organization Documents Publicly AvailableThe organization's governing documents, policies, and financial statements are available upon request. The Form 990 is uploaded on the Guidestar website.
Caregiver Preference StudyTITLE: Caregiver Preference StudyAWARDEE: Research Triangle InstituteRaleigh, NC AMOUNT IN 2020: $50,833.22EIN: 56-0686338DATE: 5 Payments made in 2020
Creating a MPSIII zebrafish model and brain specific in vivo lysosomeTITLE: Creating a MPSIII zebrafish model and brain specific in vivo lysosome reporter for drug screening and invivo imaging of disease pathologyAwardee: Monash UniversityClayton, AustraliaAMOUNT IN 2020: $3,650.00EIN: 81-2161937DATE: May 2020
Evaluation of antisense oligonunleotide-mediated substrate reductionTITLE: Evaluation of antisense oligonunleotide-mediated substrate reduction therapyAWARDEE: Regents of the University of California - San DiegoLa Jolla, CAAMOUNT IN 2020: $47,794.50EIN: 94-3067788DATE: December 2020
Facilitate & Enhance the CNS entry of AAV Vectors to treat MPSIIIA & BTITLE: Facilitate and enhance the CNS entry of systemically delivered AAV vectors for treating MPSIIIA and MPSIIIB in mice.Awardee: Office of Sponsored Research at the University of North CarolinaChapel Hill, NCAMOUNT IN 2020: $46,700.00EIN: 56-6001393Date: June 2020
Gene Therapy project for Sanfilippo Type C using scAAV9TITLE: Gene Therapy project for Sanfilippo Type C using scAAV9AWARDEE: Phoenix NestBrooklyn, NY AMOUNT IN 2020: $379,539.40DATE: April 2020.
Grant DetailThe following grants were provided:
In Vivo testing of FDA-approved drug combination for MPSIII TreatmentTITLE: In Vivo testing of FDA-approved drug combination for MPSIII TreatmentAwardee: The Telethon Institute of Genetics and Medicine (TIGEM)Pozzuoli, ItalyAMOUNT IN 2020: $22,000.00Date: June 2020
MPSIII Enzyme Replacement ProjectTITLE: MPSIII Enzyme Replacement ProjectAwardee: TEGA TherapeuticsSan Diego, CaliforniaAmount in 2020: $200,000.00Date: January 2020.
Pre-Clinical work on systemic scAAV9 gene delivery for treating MPSIIITITLE: Pre-Clinical work on systemic scAAV9 gene delivery for treating MPSIIIAWARDEE: Office of Sponsored Research at the University of North CarolinaChapel Hill, NCAMOUNT IN 2020: $108,176.50EIN: 56-6001393DATE: July 2020
Study the effects of Anakinra in Mucopolysaccharidosis IIITITLE: Open-Label Pilot Clinical Trial Study the effects of Anakinra in Mucopolysaccharidosis IIIAWARDEE: The Lundquist InstituteTorrance, CAAMOUNT IN 2020: $322,462.50EIN: 95-2138184Date: Payments made in March & October 2020.
Transplant MPSIII Human Neural Stem CellsTITLE: Transplant MPSIII human neural stem cells engineered to overexpress and secrete SGSHAwardee: ReMotor TherapeuticsDoral, FLAMOUNT IN 2020: 1,400,500.00Date: Payments made in January & September 2020.

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