CURE DUCHENNE: Form 990, tax year 2023

View the entire original 990 at ProPublica ↗

Organization
CURE DUCHENNE (EIN 20-0299958)
Tax period
2023-01-01 to 2023-12-31
Filed
2024-10-11
IRS object ID
202402859349302250
Schema version
2023v5.1
Source
Download XML · Original 990 at ProPublica

Every field in the e-filed return. Faint text is the IRS element name, for citing.

Return header ReturnHeader

FieldValueIRS element (for citing)
Return2024-10-11T18:43:26-05:00ReturnTs
Tax Period End2023-12-31TaxPeriodEndDt

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 Begin2023-01-01TaxPeriodBeginDt

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
Signature2024-09-27SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd
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
FieldValueIRS element (for citing)
Tax2023TaxYr
Build TS2024-10-15 13:58:12ZBuildTS

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$16,749,448GrossReceiptsAmt
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 Body13VotingMembersGoverningBodyCnt
Voting Members Independent13VotingMembersIndependentCnt
Total Employee35TotalEmployeeCnt
Total Volunteers0TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$2,429,586PYContributionsGrantsAmt
CY Contributions Grants$4,489,779CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$147,656PYInvestmentIncomeAmt
CY Investment Income$549,583CYInvestmentIncomeAmt
PY Other Revenue$3,174,126PYOtherRevenueAmt
CY Other Revenue$2,318,576CYOtherRevenueAmt
PY Total Revenue$5,751,368PYTotalRevenueAmt
CY Total Revenue$7,357,938CYTotalRevenueAmt
PY Grants And Similar Paid$330,000PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$495,000CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$3,851,657PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$4,682,911CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$1,106,226CYTotalFundraisingExpenseAmt
PY Other Expenses$4,823,959PYOtherExpensesAmt
CY Other Expenses$5,069,243CYOtherExpensesAmt
PY Total Expenses$9,005,616PYTotalExpensesAmt
CY Total Expenses$10,247,154CYTotalExpensesAmt
PY Revenues Less Expenses-$3,254,248PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$2,889,216CYRevenuesLessExpensesAmt
Total Assets BOY$28,210,389TotalAssetsBOYAmt
Total Assets EOY$27,086,351TotalAssetsEOYAmt
Total Liabilities BOY$110,504TotalLiabilitiesBOYAmt
Total Liabilities EOY$256,435TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$28,099,885NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$26,829,916NetAssetsOrFundBalancesEOYAmt
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$8,370,237ExpenseAmt
Grant$495,000GrantAmt
Revenue$930,777RevenueAmt
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$8,370,237TotalProgramServiceExpensesAmt
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 StmtYes (1)ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign Activities0ForeignActivitiesInd
More Than5000 K To Org0MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
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 Document74IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee35EmployeeCnt
Employment Tax Returns Filed0EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Form8899 Filedind0Form8899Filedind
Form1098 C Filed0Form1098CFiledInd
DAF Excess Business Holdings0DAFExcessBusinessHoldingsInd
Taxable Distributions0TaxableDistributionsInd
Distribution To Donor0DistributionToDonorInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members13GoverningBodyVotingMembersCnt
Independent Voting Member13IndependentVotingMemberCnt
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 Policy0ConflictOfInterestPolicyInd
Whistleblower Policy0WhistleblowerPolicyInd
Document Retention Policy0DocumentRetentionPolicyInd
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
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)
Phone9498722552PhoneNum

US Address USAddress

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

Form990 Part VII Section A Form990PartVIISectionAGrp (22 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)$151,304$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
TJ FARNSWORTH
DIRECTOR1.00Yes (X)$0$0$0
DIANE KEMPLE
DIRECTOR1.00Yes (X)$0$0$0
CHRISTOPHER FINAZZO
DIRECTOR1.00Yes (X)$0$0$0
TIM SULLIVAN
DIRECTOR1.00Yes (X)$0$0$0
BOB SMITH
DIRECTOR1.00Yes (X)$0$0$0
KATHLENE BALISY
FINANCE DIRECTOR40.00$175,000$0$0Yes (X)
LIANNA ORLANDO
VICE PRESIDENT OF RESEARCH40.00$225,000$0$0Yes (X)
MICHAEL KELLY
CHIEF SCIENTIFIC OFFICER40.00$225,000$0$0Yes (X)
HEATHER MEDLIN
DIRECTOR OF CLINICAL DEVELOPMENT40.00$220,141$0$0Yes (X)
ANDREA PIKE
DIRECTOR OF MARKETING40.00$175,000$0$0Yes (X)
MONICA UTLEY
DIRECTOR OF PROGRAMS40.00$170,353$0$0Yes (X)
EMILIE PERKINS
DIRECTOR OF COMMUNICATIONS40.00$166,267$0$0Yes (X)
KENT MORA
FORMER CHIEF OF STAFF40.00$151,051$0$0Yes (X)
RYAN MEARDON
FORMER VP OF DONOR RELATIONS40.00$183,333$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$1,842,449TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$0TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K19IndivRcvdGreaterThan100KCnt
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
TRINDS LLC
6425 LIVING SPACES 2ND FLOORPITTSBURGHPA15206PROGRAM SERVICES$339,986
STARS & STRIPE CHILDREN FOUNDATION
8149 SPECTRUMIRVINECA92618EVENT SERVICES$252,000
MOBILITY WORKS
560 BOSTON PROVIDENCE TRNPKNORWOODMA02062MEDICAL DEVICE SERVICES$182,590
DMH NAPA VALLEY LLC
108 RANDOLPH ST BNAPACA94559CONSULTING COMPANY$174,068
BRAND AMP LLC
1945 PLACENTIA AVENUE BLG CCOSTA MESACA92627MARKETING$150,779
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K7CntrctRcvdGreaterThan100KCnt
Fundraising$130,632FundraisingAmt
All Other Contributions$4,359,147AllOtherContributionsAmt
Total Contributions$4,489,779TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$363,250TotalRevenueColumnAmt
Related Or Exempt Func Income$363,250RelatedOrExemptFuncIncomeAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$6,783,677SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$6,597,344SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$186,333SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$186,333TotalRevenueColumnAmt
Related Or Exempt Func Income$186,333RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$4,731,548FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$130,632ContriRptFundraisingEventAmt
Fundraising Direct Expenses$2,794,166FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,937,382TotalRevenueColumnAmt
Exclusion$1,937,382ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
DATASET INCOME541700$245,789$245,789
TRINDS LLC INCOME541700$135,405$135,405
FieldValueIRS element (for citing)
Other Revenue Total$381,194OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$7,357,938TotalRevenueColumnAmt
Related Or Exempt Func Income$930,777RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$1,937,382ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$495,000TotalAmt
Program Services$495,000ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$2,563,123TotalAmt
Program Services$2,380,782ProgramServicesAmt
Management And General$14,255ManagementAndGeneralAmt
Fundraising$168,086FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$1,540,526TotalAmt
Program Services$854,951ProgramServicesAmt
Management And General$313,509ManagementAndGeneralAmt
Fundraising$372,066FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$268,067TotalAmt
Program Services$212,139ProgramServicesAmt
Management And General$2,681ManagementAndGeneralAmt
Fundraising$53,247FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$311,195TotalAmt
Program Services$237,522ProgramServicesAmt
Management And General$19,252ManagementAndGeneralAmt
Fundraising$54,421FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$377,814TotalAmt
Program Services$310,570ProgramServicesAmt
Management And General$6,195ManagementAndGeneralAmt
Fundraising$61,049FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$68,759TotalAmt
Program Services$41,255ProgramServicesAmt
Management And General$13,752ManagementAndGeneralAmt
Fundraising$13,752FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$20,734TotalAmt
Program Services$1,098ProgramServicesAmt
Management And General$4,222ManagementAndGeneralAmt
Fundraising$15,414FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$84,972TotalAmt
Program Services$79,241ProgramServicesAmt
Management And General$125ManagementAndGeneralAmt
Fundraising$5,606FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$542TotalAmt
Management And General$542ManagementAndGeneralAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$155,775TotalAmt
Program Services$123,898ProgramServicesAmt
Management And General$20,874ManagementAndGeneralAmt
Fundraising$11,003FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$175,894TotalAmt
Program Services$161,157ProgramServicesAmt
Management And General$3,293ManagementAndGeneralAmt
Fundraising$11,444FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$540,276TotalAmt
Program Services$286,734ProgramServicesAmt
Management And General$78,129ManagementAndGeneralAmt
Fundraising$175,413FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$125,936TotalAmt
Program Services$60,256ProgramServicesAmt
Management And General$23,809ManagementAndGeneralAmt
Fundraising$41,871FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$6,488TotalAmt
Management And General$6,488ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$9,148TotalAmt
Program Services$5,551ProgramServicesAmt
Management And General$2,039ManagementAndGeneralAmt
Fundraising$1,558FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
OUTSIDE SERVICES$2,407,152$2,336,910$67,889$2,353
PUBLIC RELATIONS$464,766$464,766
OFFICE SUPPLIES$268,543$84,499$160,412$23,632
RESEARCH EXPENSE$130,007$130,007

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$232,437TotalAmt
Program Services$103,901ProgramServicesAmt
Management And General$33,225ManagementAndGeneralAmt
Fundraising$95,311FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$10,247,154TotalAmt
Program Services$8,370,237ProgramServicesAmt
Management And General$770,691ManagementAndGeneralAmt
Fundraising$1,106,226FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$8,410,921BOYAmt
EOY$2,539,794EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$37,337LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$27,605LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$16,220BOYAmt
EOY$9,732EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

FieldValueIRS element (for citing)
BOY$19,514,869BOYAmt
EOY$24,150,054EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$268,379BOYAmt
EOY$386,771EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$28,210,389BOYAmt
EOY$27,086,351EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$36,108BOYAmt
EOY$137,002EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$66,808BOYAmt
EOY$42,469EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$7,588BOYAmt
EOY$76,964EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$110,504BOYAmt
EOY$256,435EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$28,099,885BOYAmt
EOY$26,829,916EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$28,099,885BOYAmt
EOY$26,829,916EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$28,210,389BOYAmt
EOY$27,086,351EOYAmt
FieldValueIRS element (for citing)
Info In Schedule O Part XIYes (X)InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss-$2,889,216ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$1,377,813NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$241,434OtherChangesInNetAssetsAmt
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$5,323,906CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,772,905CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,804,005CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,429,586CurrentTaxYearMinus1YearAmt
Current Tax Year$4,489,779CurrentTaxYearAmt
Total$16,820,181TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$5,323,906CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,772,905CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,804,005CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,429,586CurrentTaxYearMinus1YearAmt
Current Tax Year$4,489,779CurrentTaxYearAmt
Total$16,820,181TotalAmt
FieldValueIRS element (for citing)
Public Support Total170$16,820,181PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$21,839,191CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,574,511CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$994,482CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$147,656CurrentTaxYearMinus1YearAmt
Current Tax Year$363,250CurrentTaxYearAmt
Total$24,919,090TotalAmt
FieldValueIRS element (for citing)
Total Support$41,739,271TotalSupportAmt
Gross Receipts Rltd Activities$13,618,663GrossReceiptsRltdActivitiesAmt
Public Support CY1700.40300PublicSupportCY170Pct
Public Support PY1700.40960PublicSupportPY170Pct
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$27,605DepreciationAmt
Book Value$9,732BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$9,732TotalBookValueLandBuildingsAmt

Invst Program Related Org InvstProgramRelatedOrgGrp

FieldValueIRS element (for citing)
DescINVESTMENTS HELDDesc
Book Value$24,150,054BookValueAmt
Method ValuationFMethodValuationCd
FieldValueIRS element (for citing)
Total Book Value Program Rltd$24,150,054TotalBookValueProgramRltdAmt

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescPENSION PAYABLEDesc
Amt$76,964Amt
FieldValueIRS element (for citing)
Total Liability$76,964TotalLiabilityAmt
Total Rev Etc Audited Fincl Stmt$8,977,185TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$1,377,813NetUnrealizedGainsInvstAmt
Other Revenue$241,434OtherRevenueAmt
Revenue Not Reported$1,619,247RevenueNotReportedAmt
Revenue Subtotal$7,357,938RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$7,357,938TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$10,516,661TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included$269,507OtherExpensesIncludedAmt
Expenses Not Reported$269,507ExpensesNotReportedAmt
Expenses Subtotal$10,247,154ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$10,247,154TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART XI, LINE 2D - OTHER ADJUSTMENTS:EMPLOYEE RETENTION CREDIT RECEIVED IN 2023 241,434.
PART XII, LINE 2D - OTHER ADJUSTMENTS:RENT EXPENSE REDUCTION DUE TO RIGHT OF USE ADJUSTMENT 269,507.

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1FUNDRAISER - 2023 MJM EVENTEvent1Nm
Gross Receipts Event1$1,114,700GrossReceiptsEvent1Amt
Gross Revenue Event1$1,114,700GrossRevenueEvent1Amt
Other Direct Expenses Event1$72,995OtherDirectExpensesEvent1Amt
Event2FUNDRAISER-NEWPORT BEACH GALAEvent2Nm
Gross Receipts Event2$960,095GrossReceiptsEvent2Amt
Charitable Contri Event2$25,000CharitableContriEvent2Amt
Gross Revenue Event2$935,095GrossRevenueEvent2Amt
Other Direct Expenses Event2$571,998OtherDirectExpensesEvent2Amt
Other Events Total22OtherEventsTotalCnt
Gross Receipts Other Events$2,787,385GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$105,632CharitableContriOtherEventsAmt
Gross Revenue Other Events$2,681,753GrossRevenueOtherEventsAmt
Oth Direct Expnss Other Events$2,149,173OthDirectExpnssOtherEventsAmt
Gross Receipts Total$4,862,180GrossReceiptsTotalAmt
Charitable Contributions Tot$130,632CharitableContributionsTotAmt
Gross Revenue Total Events$4,731,548GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$2,794,166OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$2,794,166DirectExpenseSummaryEventsAmt
Net Income Summary$1,937,382NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (3 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
THE BRIGHAM AND WOMEN'S HOSPITAL INC
75 FRANCIS STREETBOSTONMA02115042312909$155,000$0EDUCATION/ OUTREACH/ RESEARCH
NEUROLOGY AND NEURO CARE CENTER
2817 S MAYHILL RD STE 115DENTONTX76208882364725$300,000$0EDUCATION/ OUTREACH/ RESEARCHEDUCATION/ OUTREACH/ RESEARCH
ANALYSIS GROUP
PO BOX 845512BOSTONMA02284042727260$40,000$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 (10 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
LIANNA ORLANDO
VICE PRESIDENT OF RESEARCH$225,000$0$0$0$0$0$0$0$0$0$225,000$0$0$0
MICHAEL KELLY
CHIEF SCIENTIFIC OFFICER$225,000$0$0$0$0$0$0$0$0$0$225,000$0$0$0
HEATHER MEDLIN
DIRECTOR OF CLINICAL DEVELOPMENT$220,141$0$0$0$0$0$0$0$0$0$220,141$0$0$0
RYAN MEARDON
FORMER VP OF DONOR RELATIONS$183,333$0$0$0$0$0$0$0$0$0$183,333$0$0$0
KATHLENE BALISY
FINANCE DIRECTOR$175,000$0$0$0$0$0$0$0$0$0$175,000$0$0$0
ANDREA PIKE
DIRECTOR OF MARKETING$175,000$0$0$0$0$0$0$0$0$0$175,000$0$0$0
MONICA UTLEY
DIRECTOR OF PROGRAMS$170,353$0$0$0$0$0$0$0$0$0$170,353$0$0$0
EMILIE PERKINS
DIRECTOR OF COMMUNICATIONS$166,267$0$0$0$0$0$0$0$0$0$166,267$0$0$0
DEBRA MILLER
PRESIDENT & CEO$151,304$0$0$0$0$0$0$0$0$0$151,304$0$0$0
KENT MORA
FORMER CHIEF OF STAFF$151,051$0$0$0$0$0$0$0$0$0$151,051$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 12THE 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 9:2020 & 2021 EMPLOYEE RETENTION CREDIT 241,434.

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$624,635TotalIncomeAmt
End Of Year Assets$20,206,075EndOfYearAssetsAmt

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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