CURE DUCHENNE: Form 990, tax year 2022

View the entire original 990 at ProPublica ↗

Organization
CURE DUCHENNE (EIN 20-0299958)
Tax period
2022-01-01 to 2022-12-31
Filed
2023-11-14
IRS object ID
202343189349315499
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)
Return2023-11-14T18:03:48-06:00ReturnTs
Tax Period End2022-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN954303700PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1JOHN S BALISY & COMPANYBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line124000 ALICIA PARKWAY 17 STE 466AddressLine1Txt
CityMISSION VIEJOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP92691ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2022-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN200299958EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1CURE DUCHENNEBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlCUREBusinessNameControlTxt
Phone9498722552PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1100 BAYVIEW CIRCLE 5600AddressLine1Txt
CityNEWPORT BEACHCityNm
State AbbreviationCAStateAbbreviationCd
ZIP92660ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonDEBRA MILLERPersonNm
Person TitleCEOPersonTitleTxt
Phone9498722552PhoneNum
Signature2023-11-14SignatureDt

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstDEBRAPersonFirstNm
Person LastMILLERPersonLastNm
FieldValueIRS element (for citing)
SSNXXX-XX-XXXXSSN
FieldValueIRS element (for citing)
IRS Responsible Prty Info CurrYes (1)IRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJOHN S BALISY COMPANYPreparerPersonNm
PTINP01385861PTIN
Phone9495407519PhoneNum

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

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

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerDEBRA MILLERPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1100 BAYVIEW 5600AddressLine1Txt
CityNEWPORT BEACHCityNm
State AbbreviationCAStateAbbreviationCd
ZIP92660ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$10,530,786GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.CUREDUCHENNE.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2003FormationYr
Legal Domicile StateCALegalDomicileStateCd
Activity Or MissionCOORDINATING AND FUNDING RESEARCH NECESSARY TO FIND A CURE FOR DUCHENNE MUSCULAR DYSTROPHY. AS WELL AS, IMPROVING THE CARE AND HEALTH OF DUCHENNE MUSCULAR DISTROPHY PATIENTS.ActivityOrMissionDesc
Voting Members Governing Body12VotingMembersGoverningBodyCnt
Voting Members Independent10VotingMembersIndependentCnt
Total Employee37TotalEmployeeCnt
Total Volunteers18TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$2,697,179PYContributionsGrantsAmt
CY Contributions Grants$2,429,586CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$412,798PYInvestmentIncomeAmt
CY Investment Income$147,656CYInvestmentIncomeAmt
PY Other Revenue$2,332,242PYOtherRevenueAmt
CY Other Revenue$3,174,126CYOtherRevenueAmt
PY Total Revenue$5,442,219PYTotalRevenueAmt
CY Total Revenue$5,751,368CYTotalRevenueAmt
PY Grants And Similar Paid$394,830PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$330,000CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$2,939,257PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$3,851,657CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$1,066,464CYTotalFundraisingExpenseAmt
PY Other Expenses$4,271,299PYOtherExpensesAmt
CY Other Expenses$4,823,959CYOtherExpensesAmt
PY Total Expenses$7,605,386PYTotalExpensesAmt
CY Total Expenses$9,005,616CYTotalExpensesAmt
PY Revenues Less Expenses-$2,163,167PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$3,254,248CYRevenuesLessExpensesAmt
Total Assets BOY$33,154,912TotalAssetsBOYAmt
Total Assets EOY$28,410,543TotalAssetsEOYAmt
Total Liabilities BOY$309,658TotalLiabilitiesBOYAmt
Total Liabilities EOY$310,658TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$32,845,254NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$28,099,885NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionCURE DUCHENNE IS A NON-PROFIT ORGANIZATION DEDICATED TO RAISING FUNDS AND COORDINATING AND FUNDING RESEARCH NECESSARY TO FIND A CURE FOR DUCHENNE MUSCULAR DYSTROPHY, INCREASING PUBLIC AWARENESS FOR DUCHENNE MUSCULAR DYSTROPHY PATIENTS, IMPROVING CARE, HEALTH,AND QUAILITY OF LIVING FOR DUCHENNE MUSCULAR DYSTROPHY PATIENTS.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$6,736,726ExpenseAmt
Grant$330,000GrantAmt
Revenue$114,728RevenueAmt
DescCURE DUCHENNE WAS ORGANIZED IN 2003 WITH THE MISSION TO FUND RESEARCH NECESSARY TO FIND A CURE FOR DUCHENNE MUSCULAR DYSTROPHY PATIENTS, AND IMPROVING THE CARE AND HEALTH OF DUCHENNE MUSCULAR DYSTROPHY PATIENTS. SINCE CURE DUCHENNE WAS ORGANIZED, THE ORGANZIATIO HAS BEEN VERY INSTRUMENTAL IN HAVING SEVERAL DRUGS APPROVED BY THE FDA FOR PATIENTS WITH DUCHENNE MUSCULAR DYSTROPHY.Desc
Total Program Service Expenses$6,736,726TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying Activities0LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related InvstYes (1)ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other LiabilitiesYes (1)ReportOtherLiabilitiesInd
Include FIN48 Footnote0IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign Activities0ForeignActivitiesInd
More Than5000 K To Org0MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional FundraisingYes (1)ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash Contri0DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded EntityYes (1)DisregardedEntityInd
Related EntityYes (1)RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document45IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee37EmployeeCnt
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
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members12GoverningBodyVotingMembersCnt
Independent Voting Member10IndependentVotingMemberCnt
Family Or Business RlnYes (1)FamilyOrBusinessRlnInd
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 Body0Form990ProvidedToGvrnBodyInd
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 FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTXStatesWhereCopyOfReturnIsFldCd
Other WebsiteYes (X)OtherWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1DEBRA MILLERBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone9495407519PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line124000 ALICIA PARKWAY STE 466AddressLine1Txt
CityMISSION VIEJOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP92691ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (18 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtKey EmployeeKeyEmployeeIndFormer Ofcr Director TrusteeFormerOfcrDirectorTrusteeInd
PAUL MILLER
SECRETARY10.00Yes (X)Yes (X)$0$0$0
DEBRA MILLER
PRESIDENT & CEO40.00Yes (X)Yes (X)$151,305$0$0
JEFFREY GOFFMAN
DIRECTOR1.00Yes (X)$0$0$0
PETER STRELOW
DIRECTOR1.00Yes (X)$0$0$0
DAVID MACINNIS
DIRECTOR1.00Yes (X)$0$0$0
DANA WHITE
DIRECTOR1.00Yes (X)$0$0$0
RYAN WILLIAMS
DIRECTOR1.00Yes (X)$0$0$0
MARTIN LEHR
DIRECTOR1.00Yes (X)$0$0$0
ELAINE WU
DIRECTOR1.00Yes (X)$0$0$0
TJ FARNSWORTH
DIRECTOR1.00Yes (X)$0$0$0
SARAH MCELROY
DIRECTOR1.00Yes (X)$0$0$0
TIM SULLIVAN
DIRECTOR1.00Yes (X)$0$0$0
KATHLENE BALISY
FINANCE DIRECTOR40.00$170,833$0$0Yes (X)
BRADLEY HODGES
FORMER PARTNER WITH CUREDUCHENNE VENTURES40.00$151,231$0$0Yes (X)
MICHAEL KELLY
CHIEF SCIENTIFIC OFFICER40.00$175,000$0$0Yes (X)
HEATHER MEDLIN
SENIOR DIRECTOR OF CLINICAL DEVELOPMENT40.00$156,821$0$0Yes (X)
KENT MORA
FORMER CHIEF OF STAFF40.00$211,308$0$0Yes (X)
LIANNA ORLANDO
VICE PRESIDENT OF RESEARCH40.00$196,917$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$1,213,415TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$0TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K10IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedYes (1)FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (5 entries)

Address Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCdServicesServicesDescCompensationCompensationAmt
THE WORTHWHILE COMPANY
PO BOX 63478CHARLOTTENC28263SOFTWARE DEVELOPMENT$875,400
TRINDS LLC
6425 LIVING SPACE 2ND FLOORPITTSBURGPA15206RESEARCH$289,580
SYSTEM HOLDINGS LLC
PO BOX 644722PITTSBURGPA15264EMPLOYMENT SERVICES$139,602
BRAND AMP LLC
1945 PLACENTIA AVE BLG CCOSTA MESACA92627MARKETING$127,461
IDEAL HALL
611 ANTON BLVD STE 140COSTA MESACA92626MARKETING$115,419
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K5CntrctRcvdGreaterThan100KCnt
Fundraising$1,450,872FundraisingAmt
All Other Contributions$978,714AllOtherContributionsAmt
Total Contributions$2,429,586TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$362,715TotalRevenueColumnAmt
Related Or Exempt Func Income$362,715RelatedOrExemptFuncIncomeAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$2,092,405SecuritiesAmt
Other$9,096OtherAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$2,316,560SecuritiesAmt
Other$0OtherAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$224,155SecuritiesAmt
Other$9,096OtherAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$215,059TotalRevenueColumnAmt
Related Or Exempt Func Income-$215,059RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$5,669,912FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$1,450,872ContriRptFundraisingEventAmt
Fundraising Direct Expenses$2,462,858FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$3,207,054TotalRevenueColumnAmt
Exclusion$3,207,054ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescTRINDS LLC LOSSDesc
Business541700BusinessCd
Total Revenue Column-$32,928TotalRevenueColumnAmt
Related Or Exempt Func Income-$32,928RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total-$32,928OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$5,751,368TotalRevenueColumnAmt
Related Or Exempt Func Income$114,728RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$3,207,054ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$330,000TotalAmt
Program Services$330,000ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$1,216,122TotalAmt
Program Services$1,132,599ProgramServicesAmt
Management And General$15,211ManagementAndGeneralAmt
Fundraising$68,312FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$2,174,238TotalAmt
Program Services$1,373,482ProgramServicesAmt
Management And General$326,427ManagementAndGeneralAmt
Fundraising$474,329FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$203,034TotalAmt
Program Services$163,035ProgramServicesAmt
Management And General$20ManagementAndGeneralAmt
Fundraising$39,979FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$258,263TotalAmt
Program Services$189,637ProgramServicesAmt
Management And General$20,226ManagementAndGeneralAmt
Fundraising$48,400FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$19,797TotalAmt
Program Services$5,083ProgramServicesAmt
Management And General$11,927ManagementAndGeneralAmt
Fundraising$2,787FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$45,701TotalAmt
Program Services$13,470ProgramServicesAmt
Management And General$29,001ManagementAndGeneralAmt
Fundraising$3,230FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$242,659TotalAmt
Program Services$160,200ProgramServicesAmt
Management And General$17,478ManagementAndGeneralAmt
Fundraising$64,981FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$180,698TotalAmt
Program Services$13,514ProgramServicesAmt
Management And General$165,278ManagementAndGeneralAmt
Fundraising$1,906FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$229,575TotalAmt
Program Services$89,322ProgramServicesAmt
Management And General$117,985ManagementAndGeneralAmt
Fundraising$22,268FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$385,034TotalAmt
Program Services$309,392ProgramServicesAmt
Management And General$14,555ManagementAndGeneralAmt
Fundraising$61,087FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$409,105TotalAmt
Program Services$249,542ProgramServicesAmt
Management And General$109,813ManagementAndGeneralAmt
Fundraising$49,750FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$4,054TotalAmt
Management And General$4,054ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$59,928TotalAmt
Program Services$32,866ProgramServicesAmt
Management And General$12,576ManagementAndGeneralAmt
Fundraising$14,486FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
OUTSIDE SERVICES$2,269,069$2,057,420$136,099$75,550
PROMOTIONAL EXPENSE$327,334$214,051$62,998$50,285
PUBLIC RELATIONS$252,504$246,001$6,503
DUES & SUBSCRIPTIONS$134,145$47,810$53,402$32,933

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$264,356TotalAmt
Program Services$109,302ProgramServicesAmt
Management And General$105,376ManagementAndGeneralAmt
Fundraising$49,678FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$9,005,616TotalAmt
Program Services$6,736,726ProgramServicesAmt
Management And General$1,202,426ManagementAndGeneralAmt
Fundraising$1,066,464FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$13,432,108BOYAmt
EOY$8,410,921EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$37,337LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$21,117LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$16,220EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

FieldValueIRS element (for citing)
BOY$19,555,425BOYAmt
EOY$19,514,869EOYAmt

Intangible Assets IntangibleAssetsGrp

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

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$167,379BOYAmt
EOY$468,533EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$33,154,912BOYAmt
EOY$28,410,543EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$59,950BOYAmt
EOY$36,108EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$15,177BOYAmt
EOY$66,808EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$234,531BOYAmt
EOY$207,742EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$309,658BOYAmt
EOY$310,658EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$32,845,254BOYAmt
EOY$28,099,885EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$32,845,254BOYAmt
EOY$28,099,885EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$33,154,912BOYAmt
EOY$28,410,543EOYAmt
FieldValueIRS element (for citing)
Info In Schedule O Part XIYes (X)InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss-$3,254,248ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$1,649,977NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$158,856OtherChangesInNetAssetsAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Consolidated Basis Fincl StmtYes (X)ConsolidatedBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit Committee0AuditCommitteeInd
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$4,715,363CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$5,323,906CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,772,905CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,804,005CurrentTaxYearMinus1YearAmt
Current Tax Year$2,429,586CurrentTaxYearAmt
Total$17,045,765TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$4,715,363CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$5,323,906CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,772,905CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,804,005CurrentTaxYearMinus1YearAmt
Current Tax Year$2,429,586CurrentTaxYearAmt
Total$17,045,765TotalAmt
FieldValueIRS element (for citing)
Public Support Total170$17,045,765PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$9,248CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$21,839,191CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,574,511CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$994,482CurrentTaxYearMinus1YearAmt
Current Tax Year$147,656CurrentTaxYearAmt
Total$24,565,088TotalAmt
FieldValueIRS element (for citing)
Total Support$41,610,853TotalSupportAmt
Gross Receipts Rltd Activities$11,622,712GrossReceiptsRltdActivitiesAmt
Public Support CY1700.40960PublicSupportCY170Pct
Public Support PY1700.43330PublicSupportPY170Pct
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)
Agent Trustee Etc0AgentTrusteeEtcInd
Incl Escrow Custodial Acct Liab0InclEscrowCustodialAcctLiabInd

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$37,337OtherCostOrOtherBasisAmt
Depreciation$21,117DepreciationAmt
Book Value$16,220BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$16,220TotalBookValueLandBuildingsAmt

Invst Program Related Org InvstProgramRelatedOrgGrp

FieldValueIRS element (for citing)
DescINVESTMENTS HELDDesc
Book Value$19,514,869BookValueAmt
Method ValuationFMethodValuationCd
FieldValueIRS element (for citing)
Total Book Value Program Rltd$19,514,869TotalBookValueProgramRltdAmt

Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)

DescDescAmtAmt
PENSION PAYABLE$7,588
LEASE LIABILITIES$200,154
FieldValueIRS element (for citing)
Total Liability$207,742TotalLiabilityAmt
Total Rev Etc Audited Fincl Stmt$4,260,247TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst-$1,649,977NetUnrealizedGainsInvstAmt
Other Revenue$158,856OtherRevenueAmt
Revenue Not Reported-$1,491,121RevenueNotReportedAmt
Revenue Subtotal$5,751,368RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$5,751,368TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$9,005,616TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$9,005,616ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$9,005,616TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART XI, LINE 2D - OTHER ADJUSTMENTS:FormAndLineReferenceDesc
Explanation2021 EMPLOYEE RETENTION CREDIT RECEIVED IN 2022 158,924. WASH SALES LOSS DISALLOWED -68.ExplanationTxt

Schedule G IRS990ScheduleG

FieldValueIRS element (for citing)
Mail SolicitationsYes (X)MailSolicitationsInd
Email SolicitationsYes (X)EmailSolicitationsInd
Solicitation Of Non Govt GrantsYes (X)SolicitationOfNonGovtGrantsInd
Solicitation Of Govt GrantsYes (X)SolicitationOfGovtGrantsInd
Special Fundraising EventsYes (X)SpecialFundraisingEventsInd
Agrmt Prof Fundraising Acty0AgrmtProfFundraisingActyInd

Fundraiser Activity Info FundraiserActivityInfoGrp

Organization Business Name OrganizationBusinessName

FieldValueIRS element (for citing)
Business Name Line1HANNAH LEIGH INCBusinessNameLine1Txt

US Address USAddress

FieldValueIRS element (for citing)
Address Line1304 BROADWAY STREETAddressLine1Txt
CityVENICECityNm
State AbbreviationCAStateAbbreviationCd
ZIP90291ZIPCd
FieldValueIRS element (for citing)
ActivityANNUAL NAPA GALA FUNDRAISINGActivityTxt
Fundraiser Control Of Funds0FundraiserControlOfFundsInd
Gross Receipts$1,394,710GrossReceiptsAmt
Retained By Contractor$59,827RetainedByContractorAmt
Net To Organization$1,334,883NetToOrganizationAmt
FieldValueIRS element (for citing)
Total Gross Receipts$1,394,710TotalGrossReceiptsAmt
Total Retained By Contractors$59,827TotalRetainedByContractorsAmt
Total Net To Organization$1,334,883TotalNetToOrganizationAmt
Licensed StatesCALicensedStatesCd
Licensed StatesMALicensedStatesCd
Licensed StatesTNLicensedStatesCd
Licensed StatesWILicensedStatesCd
Licensed StatesTXLicensedStatesCd

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1FUNDRAISER-MIAMI GALAEvent1Nm
Gross Receipts Event1$568,530GrossReceiptsEvent1Amt
Charitable Contri Event1$13,100CharitableContriEvent1Amt
Gross Revenue Event1$555,430GrossRevenueEvent1Amt
Other Direct Expenses Event1$135,188OtherDirectExpensesEvent1Amt
Event2FUNDRAISER-NEWPORT BEACH GALAEvent2Nm
Gross Receipts Event2$1,394,710GrossReceiptsEvent2Amt
Charitable Contri Event2$40,000CharitableContriEvent2Amt
Gross Revenue Event2$1,354,710GrossRevenueEvent2Amt
Other Direct Expenses Event2$399,631OtherDirectExpensesEvent2Amt
Other Events Total14OtherEventsTotalCnt
Gross Receipts Other Events$5,157,544GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$1,397,772CharitableContriOtherEventsAmt
Gross Revenue Other Events$3,759,772GrossRevenueOtherEventsAmt
Oth Direct Expnss Other Events$1,928,039OthDirectExpnssOtherEventsAmt
Gross Receipts Total$7,120,784GrossReceiptsTotalAmt
Charitable Contributions Tot$1,450,872CharitableContributionsTotAmt
Gross Revenue Total Events$5,669,912GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$2,462,858OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$2,462,858DirectExpenseSummaryEventsAmt
Net Income Summary$3,207,054NetIncomeSummaryAmt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceSCHEDULE G, PART I, LINE 2B, COLUMN (V)FormAndLineReferenceDesc
ExplanationDURING 2022, THE ORGANIZATION PAID THE FUNDRAISER $59,827. THESE PAYMENTS REPRESENT SERVICES RENDERED DURING THE FUNDRAISING EVENTS, INCLUDING ORGANIZING AND COORDINATING THE FUNCTIONS.ExplanationTxt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (2 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
THE BRIGHAM AND WOMEN'S HOSPITAL INC
75 FRANCIS STREETBOSTONMA02115042312909$230,000$0EDUCATION/ OUTREACH/ RESEARCH
FOUNDATION OF NATIONAL INSTITUTE OF HEALTH
9650 ROCKVILLE PIKE RM 3411BETHSEDAMD20814521986675$100,000$0EDUCATION/ OUTREACH/ RESEARCH

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationGRANTS GIVEN OUT BY THE COMPANY ARE MONITORED AND ASSESSED WHETHER THE GRANTS WERE USED FOR THE ORIGINALLY INTENDED PURPOSE FOR THE GRANT.ExplanationTxt

Schedule J IRS990ScheduleJ

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

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (7 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountBonus Related OrganizationsBonusRelatedOrganizationsAmtOther Compensation Filing OrgOtherCompensationFilingOrgAmtOther Compensation Rltd OrgsOtherCompensationRltdOrgsAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
KENT MORA
FORMER CHIEF OF STAFF$211,308$0$0$0$0$0$0$0$0$0$211,308$0$0$0
LIANNA ORLANDO
VICE PRESIDENT OF RESEARCH$196,917$0$0$0$0$0$0$0$0$0$196,917$0$0$0
MICHAEL KELLY
CHIEF SCIENTIFIC OFFICER$175,000$0$0$0$0$0$0$0$0$0$175,000$0$0$0
KATHLENE BALISY
FINANCE DIRECTOR$170,833$0$0$0$0$0$0$0$0$0$170,833$0$0$0
HEATHER MEDLIN
SENIOR DIRECTOR OF CLINICAL DEVELOPM$156,821$0$0$0$0$0$0$0$0$0$156,821$0$0$0
DEBRA MILLER
PRESIDENT & CEO$151,305$0$0$0$0$0$0$0$0$0$151,305$0$0$0
BRADLEY HODGES
FORMER PARTNER WITH CUREDUCHENNE VEN$151,231$0$0$0$0$0$0$0$0$0$151,231$0$0$0

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (6 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION A, LINE 2DEBRA AND PAUL MILLER HAVE A FAMILY RELATIONSHIP.
FORM 990, PART VI, SECTION B, LINE 11BFORM 990 WILL BE AVAILABLE TO ALL THE BOARD MEMBERS TO REVIEW PRIOR TO FILING AT THE REGULARLY SCHEDULED BOARD MEETINGS. HOWEVER, A LIMITED NUMBER OF BOARD MEMBERS WILL REVIEW THE ENTIRE FORM 990 PRIOR TO FILING.
FORM 990, PART VI, SECTION B, LINE 12CTHE BOARD OF DIRECTORS ARE REQUIRED TO REVIEW AND SIGN THE CONFLICT OF INTEREST POLICY AT LEAST ANNUALLY. THE BOARD MEMBER MUST INFORM THE REST OF THE BOARD IF A CONFLICT ARISES OR IF IT EXISTS.
FORM 990, PART VI, SECTION B, LINE 15COMPENSATION OF TOP MANAGEMENT AND OFFICERS OF THE ORGANIZATION ARE REVIEWED BY INDEPENDENT LEGAL COUNSEL AND SUBMITTED TO THE BOARD MEMBERS FOR APPROVAL.
FORM 990, PART VI, SECTION C, LINE 19THE ORGANZIATION'S AUDITED FINANCIAL STATEMENTS AND FORM 990 ARE AVAILABLE TO THE PUBLIC VIA THE GUIDESTAR USA INC WEBSITE.
FORM 990, PART XI, LINE 9:2021 EMPLOYEE RETENTION CREDIT RECEIVED IN 2022 158,924. WASH SALE LOSS DISALLOWED -68.

Schedule R IRS990ScheduleR

Id Disregarded Entities IdDisregardedEntitiesGrp

Disregarded Entity Name DisregardedEntityName

FieldValueIRS element (for citing)
Business Name Line1CUREDUCHENNE VENTURE LLCBusinessNameLine1Txt

US Address USAddress

FieldValueIRS element (for citing)
Address Line124000 ALICIA PARKWAY STE 466AddressLine1Txt
CityMISSION VIEJOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP92691ZIPCd
FieldValueIRS element (for citing)
EIN383934145EIN
Primary ActivitiesINVESTING IN RESEARCHPrimaryActivitiesTxt
Legal Domicile StateCALegalDomicileStateCd
Total Income$112,822TotalIncomeAmt
End Of Year Assets$20,561,254EndOfYearAssetsAmt

Direct Controlling Entity Name DirectControllingEntityName

FieldValueIRS element (for citing)
Business Name Line1CURE DUCHENNEBusinessNameLine1Txt

Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp

Disregarded Entity Name DisregardedEntityName

FieldValueIRS element (for citing)
Business Name Line1CD ACCESSBusinessNameLine1Txt

US Address USAddress

FieldValueIRS element (for citing)
Address Line124000 ALICIA PARKWAY STE 466AddressLine1Txt
CityMISSION VIEJOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP92691ZIPCd
FieldValueIRS element (for citing)
EIN813735979EIN
Primary ActivitiesDISTRIBUTE MEDICINE & OTHER THERAPIES TO INDIVIDUALS WITH DUCHENNE DISEASEPrimaryActivitiesTxt
Legal Domicile StateCALegalDomicileStateCd
Exempt Code Section501(C)(3)ExemptCodeSectionTxt
Public Charity StatusACTIVEPublicCharityStatusTxt
Controlled Organization0ControlledOrganizationInd
FieldValueIRS element (for citing)
Receipt Of Int Annts Rnts Rylts0ReceiptOfIntAnntsRntsRyltsInd
Gift Grnt Or Cap Contri To Oth Org0GiftGrntOrCapContriToOthOrgInd
Gift Grnt Cap Contri From Oth Org0GiftGrntCapContriFromOthOrgInd
Loans Or Guarantees To Other Org0LoansOrGuaranteesToOtherOrgInd
Loans Or Guarantees From Oth Org0LoansOrGuaranteesFromOthOrgInd
Div Related Organization0DivRelatedOrganizationInd
Asset Sale To Other Org0AssetSaleToOtherOrgInd
Asset Purchase From Other Org0AssetPurchaseFromOtherOrgInd
Asset Exchange0AssetExchangeInd
Rental Of Facilities To Oth Org0RentalOfFacilitiesToOthOrgInd
Rental Of Fclts From Oth Org0RentalOfFcltsFromOthOrgInd
Perform Of Services For Oth Org0PerformOfServicesForOthOrgInd
Perform Of Services By Other Org0PerformOfServicesByOtherOrgInd
Sharing Of Facilities0SharingOfFacilitiesInd
Paid Employees Sharing0PaidEmployeesSharingInd
Reimbursement Paid To Other Org0ReimbursementPaidToOtherOrgInd
Reimbursement Paid By Other Org0ReimbursementPaidByOtherOrgInd
Transfer To Other Org0TransferToOtherOrgInd
Transfer From Other Org0TransferFromOtherOrgInd

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