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BARTH SYNDROME FOUNDATION INC: Form 990, tax year 2022

View the entire original 990 at ProPublica ↗

Organization
BARTH SYNDROME FOUNDATION INC (EIN 22-3755704)
Tax period
2022-01-01 to 2022-12-31
Filed
2023-08-02
IRS object ID
202342149349300909
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)
Return2023-08-02T08:44:24-05:00ReturnTs
Tax Period End2022-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN221655803PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1DORFMAN ABRAMS MUSIC LLCBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line1250 PEHLE AVE SUITE 702AddressLine1Txt
CitySADDLE BROOKCityNm
State AbbreviationNJStateAbbreviationCd
ZIP07663ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2022-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN223755704EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1THE BARTH SYNDROME FOUNDATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlBARTBusinessNameControlTxt
Phone9143036323PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line12005 PALMER AVENUE 1033AddressLine1Txt
CityLARCHMONTCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10538ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonEMILY MILLIGANPersonNm
Person TitleEXECUTIVE DIRECTORPersonTitleTxt
Phone9143036323PhoneNum
Signature2023-06-21SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstEMILYPersonFirstNm
Person LastMILLIGANPersonLastNm
FieldValueIRS element (for citing)
SSN999009999SSN
FieldValueIRS element (for citing)
IRS Responsible Prty Info CurrYes (1)IRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonEDWARD K BALTAZAR CPAPreparerPersonNm
PTINP00988228PTIN
Phone2014039750PhoneNum
Preparation2023-05-31PreparationDt

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 OfficerEMILY MILLIGANPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line12005 PALMER AVENUE 1033AddressLine1Txt
CityLARCHMONTCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10538ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$1,567,731GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.BARTHSYNDROME.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2000FormationYr
Legal Domicile StateDELegalDomicileStateCd
Activity Or Mission1)TO PROMOTE AWARENESS OF BARTH SYNDROME; 2) TO EDUCATE AND SUPPORT PHYSICIANS, RESEARCH CENTERS, AND ORGANIZATIONS ADDRESSING THE CAUSES, DIAGNOSIS, TREATMENT AND CURE OF BARTH SYNDROME; AND 3) TO ASSIST IN THE SUPPORT OF THOSE SUFFERING FROM BARTH SYNDROME AND THEIR FAMILIES.ActivityOrMissionDesc
Voting Members Governing Body14VotingMembersGoverningBodyCnt
Voting Members Independent14VotingMembersIndependentCnt
Total Employee6TotalEmployeeCnt
Total Volunteers200TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$1,214,336PYContributionsGrantsAmt
CY Contributions Grants$1,397,138CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$349,305PYInvestmentIncomeAmt
CY Investment Income-$9,426CYInvestmentIncomeAmt
PY Other Revenue$0PYOtherRevenueAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$1,563,641PYTotalRevenueAmt
CY Total Revenue$1,387,712CYTotalRevenueAmt
PY Grants And Similar Paid$204,594PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$302,773CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$545,292PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$676,721CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$161,416CYTotalFundraisingExpenseAmt
PY Other Expenses$260,846PYOtherExpensesAmt
CY Other Expenses$387,833CYOtherExpensesAmt
PY Total Expenses$1,010,732PYTotalExpensesAmt
CY Total Expenses$1,367,327CYTotalExpensesAmt
PY Revenues Less Expenses$552,909PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$20,385CYRevenuesLessExpensesAmt
Total Assets BOY$5,986,941TotalAssetsBOYAmt
Total Assets EOY$5,372,000TotalAssetsEOYAmt
Total Liabilities BOY$285,252TotalLiabilitiesBOYAmt
Total Liabilities EOY$358,670TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$5,701,689NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$5,013,330NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionTHE BARTH SYNDROME FOUNDATION IS AN ENGAGED, GLOBAL COMMUNITY WHOSE MISSION IS SAVING LIVES THROUGH EDUCATION, ADVANCES IN TREATMENT, AND FINDING A CURE FOR BARTH SYNDROME.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$466,487ExpenseAmt
Grant$120,373GrantAmt
DescTHE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2021 WAS COMPRISED OF A) THE BSF RESEARCH PROGRAM TO FOSTER SCIENTIFIC AND CLINICAL INVESTIGATIONS INTO BARTH SYNDROME TO FACILITATE THE DEVELOPMENT OF A SPECIFIC TREATMENT OR A CURE FOR THIS DISEASE, AND B)THE BARTH SYNDROME MEDICAL DATABASE AND BIO-REPOSITORY FOR THE COLLECTION AND STORAGE OF MEDICAL INFORMATION/SAMPLES ON INDIVIDUALS WITH BARTH SYNDROME OVER TIME TO GAIN A BETTER UNDERSTANDING OF THE DISEASE.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$65,922ExpenseAmt
DescTHE BARTH SYNDROME INTERNATIONAL SCIENTIFIC, MEDICAL AND FAMILY CONFERENCE IS GENERALLY HELD EVERY TWO YEARS. THE CONFERENCE BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGETHER IN ONE PLACE AT A TIME SO THAT THEY MAY COLLABORATE AND SHARE THEIR KNOWLEDGE TO GAIN A GREATER UNDERSTANDING OF BARTH SYNDROME AND LEARN ABOUT THE LATEST DISCOVERIES AND SCIENTIFIC RESEARCH AVAILABLE. FAMILIES HAVE A UNIQUE OPPORTUNITY TO BE SEEN BY THE WORLD'S GREATEST EXPERTS, THEREBY CONTRIBUTING DIRECTLY TO THE SEARCH FOR A CURE BY PRODIVING INFORMATION AND TISSUE SAMPLES. (WHILE NOT HELD IN 2021 DUE TO COVID-19, THE CONFERENCE CONTINUES TO BE A KEY PILLAR.)Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$182,400ExpenseAmt
Grant$182,400GrantAmt
DescTHE WILL MCCURDY FUND FOR THE ADVANCEMENT OF THERAPIES FOR BARTH SYNDROME WILL BE USED EXCLUSIVELY FOR THE DEVELOPMENT OF THERAPIES DESIGNED TO PREVENT, ALLEVIATE, OR ELIMINATE THE SYMPTOMS OF BARTH SYNDROME.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$278,706ExpenseAmt
DescREPRESENTS AWARENESS PROGRAMS DESIGNED TO ENSURE FAMILIES, PHYSICIANS, AND RESEARCHERS ARE AWARE OF BARTH SYNDROME. THESE PROGRAMS ARE COMPRISED OF SERVICES RELATED TO ADVOCACY AND AWARENESS, COMMUNICATION AND AWARENESS, AND FAMILY SERVICES.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$278,706TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$993,515TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying Activities0LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building Equipment0ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (1)IncludeFIN48FootnoteInd
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 Fundraising0ProfessionalFundraisingInd
Fundraising Activities0FundraisingActivitiesInd
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 Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document11IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee6EmployeeCnt
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 Members14GoverningBodyVotingMembersCnt
Independent Voting Member14IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process OtherYes (1)CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldUTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOHStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1NATALIE COHNBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone8556622784PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line12005 PALMER AVE 1033AddressLine1Txt
CityLARCHMONTCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10538ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (16 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtOfficerOfficerIndHighest Compensated EmployeeHighestCompensatedEmployeeInd
ANDREW BUDDEMEYER
BOARD MEMBER2.00Yes (X)$0$0$0
BRANDI DAGUE
BOARD MEMBER2.00Yes (X)$0$0$0
BRUCE DEVELLE
BOARD MEMBER2.00Yes (X)$0$0$0
FLORENCE MANNES
BOARD MEMBER2.00Yes (X)$0$0$0
MARYANNE CHRISANT
BOARD MEMBER2.00Yes (X)$0$0$0
MEGAN BRANAGH
BOARD MEMBER2.00Yes (X)$0$0$0
MICHELLE FLOREZ
BOARD MEMBER2.00Yes (X)$0$0$0
NINA RUSSELL
BOARD MEMBER2.00Yes (X)$0$0$0
PETER VAN LOO
BOARD MEMBER2.00Yes (X)$0$0$0
MIRIAM GREENBERG
BOARD MEMBER2.00Yes (X)$0$0$0
MARK GREENE
BOARD MEMBER2.00Yes (X)$0$0$0
KATHERINE MCCURDY
CHAIR2.00Yes (X)$0$0$0Yes (X)
KEVIN G WOODWARD
TREASURER2.00Yes (X)$0$0$0Yes (X)
JAMES BAFFA
SECRETARY2.00Yes (X)$0$0$0Yes (X)
EMILY MILLIGAN
EXECUTIVE DIRECTOR35.00$198,896$0$8,346Yes (X)
ERIK LONTOK
DIRECTOR OF RESEARCH35.00$130,646$0$5,477Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$329,542TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$13,823TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K2IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
All Other Contributions$1,397,138AllOtherContributionsAmt
Noncash Contributions$21,848NoncashContributionsAmt
Total Contributions$1,397,138TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$97,359TotalRevenueColumnAmt
Exclusion$97,359ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$73,234SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$180,019SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$106,785SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$106,785TotalRevenueColumnAmt
Exclusion-$106,785ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,387,712TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion-$9,426ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$302,773TotalAmt
Program Services$302,773ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$207,242TotalAmt
Program Services$124,345ProgramServicesAmt
Management And General$31,086ManagementAndGeneralAmt
Fundraising$51,811FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$377,013TotalAmt
Program Services$284,666ProgramServicesAmt
Management And General$60,617ManagementAndGeneralAmt
Fundraising$31,730FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$24,236TotalAmt
Program Services$18,460ProgramServicesAmt
Management And General$2,460ManagementAndGeneralAmt
Fundraising$3,316FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$68,230TotalAmt
Program Services$53,316ProgramServicesAmt
Management And General$6,522ManagementAndGeneralAmt
Fundraising$8,392FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$19,784TotalAmt
Program Services$19,784ProgramServicesAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$55,627TotalAmt
Management And General$55,627ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$102,419TotalAmt
Program Services$83,669ProgramServicesAmt
Fundraising$18,750FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$84,052TotalAmt
Program Services$15,090ProgramServicesAmt
Management And General$45,638ManagementAndGeneralAmt
Fundraising$23,324FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$69,319TotalAmt
Program Services$55,099ProgramServicesAmt
Management And General$14ManagementAndGeneralAmt
Fundraising$14,206FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$4,067TotalAmt
Management And General$4,067ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
PRINTING AND PUBLICATIO$25,990$23,708$506$1,776
DUES AND FEES$9,274$4,813$4,386$75
MISCELLANEOUS$9,191$1,020$455$7,716
AUDIO VISUAL$4,944$4,624$320

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$3,166TotalAmt
Program Services$2,148ProgramServicesAmt
Management And General$1,018ManagementAndGeneralAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$1,367,327TotalAmt
Program Services$993,515ProgramServicesAmt
Management And General$212,396ManagementAndGeneralAmt
Fundraising$161,416FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$697,821BOYAmt
EOY$686,513EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$30,000BOYAmt
EOY$103,000EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$47,767BOYAmt
EOY$42,455EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$5,211,353BOYAmt
EOY$4,540,032EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$5,986,941BOYAmt
EOY$5,372,000EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$88,869BOYAmt
EOY$88,438EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$169,200BOYAmt
EOY$243,049EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$27,183BOYAmt
EOY$27,183EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$285,252BOYAmt
EOY$358,670EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,787,258BOYAmt
EOY$998,736EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$3,914,431BOYAmt
EOY$4,014,594EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$5,701,689BOYAmt
EOY$5,013,330EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$5,986,941BOYAmt
EOY$5,372,000EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$20,385ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$682,974NetUnrlzdGainsLossesInvstAmt
Investment Expense-$25,770InvestmentExpenseAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Info In Schedule O Part XIIYes (X)InfoInScheduleOPartXIIInd
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,997,067CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$935,649CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,162,206CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,214,336CurrentTaxYearMinus1YearAmt
Current Tax Year$1,397,138CurrentTaxYearAmt
Total$6,706,396TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,997,067CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$935,649CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,162,206CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,214,336CurrentTaxYearMinus1YearAmt
Current Tax Year$1,397,138CurrentTaxYearAmt
Total$6,706,396TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,911,098SubstantialContributorsTotAmt
Public Support Total170$4,795,298PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$137,262CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$200,113CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$104,959CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$349,305CurrentTaxYearMinus1YearAmt
Current Tax Year$204,144CurrentTaxYearAmt
Total$995,783TotalAmt
FieldValueIRS element (for citing)
Total Support$7,702,179TotalSupportAmt
Gross Receipts Rltd Activities$156,766GrossReceiptsRltdActivitiesAmt
Public Support CY1700.62260PublicSupportCY170Pct
Public Support PY1700.55410PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule D IRS990ScheduleD

FieldValueIRS element (for citing)
Total Book Value Land Buildings$0TotalBookValueLandBuildingsAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$756,419TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst-$682,974NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$77,451DonatedServicesAndUseFcltsAmt
Revenue Not Reported-$605,523RevenueNotReportedAmt
Revenue Subtotal$1,361,942RevenueSubtotalAmt
Investment Expenses Not Incld$25,770InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$25,770RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$1,387,712TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$1,444,778TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$77,451DonatedServicesUseFcltsAmt
Expenses Not Reported$77,451ExpensesNotReportedAmt
Expenses Subtotal$1,367,327ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$1,367,327TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART X, LINE 2:FormAndLineReferenceDesc
ExplanationTHE ORGANIZATION IS A TAX-EXEMPT ORGANIZATION AS DEFINED BY SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE, THOUGH IT IS SUBJECT TO TAX ON INCOME UNRELATED TO ITS EXEMPT PURPOSE, UNLESS THAT INCOME IS OTHERWISE EXCLUDED BY THE CODE. THE ORGANIZATION HAS PROCESSES PRESENTLY IN PLACE TO ENSURE THE MAINTENANCE OF ITS TAX-EXEMPT STATUS; TO IDENTIFY AND REPORT UNRELATED INCOME; TO DETERMINE ITS FILING AND TAX OBLIGATIONS IN JURISDICTIONS FOR WHICH IT HAS NEXUS; AND TO IDENTIFY AND EVALUATE OTHER MATTERS THAT MAY BE CONSIDERED TAX POSITIONS. THE ORGANIZATION HAS DETERMINED THAT THERE ARE NO MATERIAL UNCERTAIN TAX POSITIONS THAT REQUIRE RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS.ExplanationTxt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (4 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdIRC SectionIRCSectionDescCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
COLORADO STATE UNIVERSITY
711 OVAL DRIVEFORT COLLINSCO80521501(C)(3)$82,400$0FEEDING THE STARVING HEART IN BARTH SYNDROME
TEXAS HEALTH CENTER
4005 MENCHACA ROADAUSTINTX78704501(C)(3)$100,000$0ALCAT1 AS A NOVEL TARGET FOR THE TREATMENT OF CARDIOMYOPATHY IN BARTH SYNDROME
BOSTON CHILDREN'S HOSPITAL
300 LONGWOOD AVENUEBOSTONMA02115501(C)(3)$68,750$0OPTIMIZATION OF BARTH SYNDROME GENE THERAPY
NYU REGISTRY ARRHYTHMIA STUDY
383 LAFAYETTE STREETNEW YORKNY10003501(C)(3)$51,623$0ACTIVATING PYRUVATE DEHYDROGENASE COMPLEX TO IMPROVE BARTH SYNDROMECARDIAC FUNCTION

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationPRIOR TO MAKING ANY PAYMENT, WE REQUIRE CERTIFICATION OF THE USE OF FUNDS FROM THE CONTRACTING OFFICER OF THE INSTITUTION RECEIVING THE GRANT ON BEHALF OF THE GRANT RECEPIENT. EVERY SIX MONTHS THEREAFTER, AND PRIOR TO ANY SUBSEQUENT PAYMENTS, THE CERTIFYING OFFICER OF THE INSTITUTION AND THE GRANT RECIPIENT MUST SIGN A DOCUMENT CERTIFYING THAT THE RESEARCH IS CONTINUING AS PLANNED AND THAT REASONABLE PROGRESS IS BEING MADE IN ACCORDANCE WITH THE ORIGINAL PROPOSAL. FOLLOWING COMPLETION OF THE WORK, A SUMMARY OF THE RESEARCH RESULTS IS REQUIRED TO BE SENT TO US AS WELL AS ANY PUBLISHED FINDING.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Compensation CommitteeYes (X)CompensationCommitteeInd
Form990 Of Other OrganizationsYes (X)Form990OfOtherOrganizationsInd
Written Employment ContractYes (X)WrittenEmploymentContractInd
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

FieldValueIRS element (for citing)
PersonEMILY MILLIGANPersonNm
TitleEXECUTIVE DIRECTORTitleTxt
Base Compensation Filing Org$178,896BaseCompensationFilingOrgAmt
Compensation Based On Rltd Orgs$0CompensationBasedOnRltdOrgsAmt
Bonus Filing Organization$0BonusFilingOrganizationAmount
Bonus Related Organizations$0BonusRelatedOrganizationsAmt
Other Compensation Filing Org$20,000OtherCompensationFilingOrgAmt
Other Compensation Rltd Orgs$0OtherCompensationRltdOrgsAmt
Deferred Compensation Flng Org$8,346DeferredCompensationFlngOrgAmt
Deferred Comp Rltd Orgs$0DeferredCompRltdOrgsAmt
Nontaxable Benefits Filing Org$0NontaxableBenefitsFilingOrgAmt
Nontaxable Benefits Rltd Orgs$0NontaxableBenefitsRltdOrgsAmt
Total Compensation Filing Org$207,242TotalCompensationFilingOrgAmt
Total Compensation Rltd Orgs$0TotalCompensationRltdOrgsAmt
Comp Report Prior990 Filing Org$0CompReportPrior990FilingOrgAmt
Comp Report Prior990 Rltd Orgs$0CompReportPrior990RltdOrgsAmt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION B, LINE 11BTHE FORM 990 IS SENT TO THE FULL BOARD OF DIRECTORS VIA EMAIL PRIOR TO BEING FILED WITH IRS. ALL DIRECTORS ARE AFFORDED THE OPPORTUNITY TO ASK QUESTIONS AND OFFER EDITS. THE DECISION OF WHETHER TO MAKE EDITS IS MADE BY THE STAFF PERSON IN CHARGE OF FINANCES WITHIN THE ORGANIZATION IN CONJUNCTION WITH CONSULTATION WITH OUR TAX PREPARER.
FORM 990, PART VI, SECTION B, LINE 12CEACH BOARD MEMBER AND ALL EMPLOYEES WHO CAN INFLUENCE THE ACTIONS OF BARTH SYNDROME FOUNDATION (BSF) MUST FILL OUT AN ANNUAL DECLARATION STATING THAT THEY HAD NO CONFLICTS OR IDENTIFYING THE NATURE OF THEIR INTERESTED PARTY TRANSACTIONS.IT IS THE RESPONSABILITY OF THE BOARD, OFFICERS, AND MANAGEMENT EMPLOYEES TO SCRUTINIZE THEIR TRANSACTIONS AND OUTSIDE BUSINESS INTERESTS AND RELATIONSHIPS FOR POTENTIAL CONFLICTS AND TO IMMEDIATELY MAKE SUCH DISCLOSURES. THE BOARD SHALL DETERMINE WHETHER A CONFLICT EXISTS AND IN THE CASE OF AN EXISTING CONFLICT, WHETHER THE CONTEMPLATED TRANSACTION MAY BE AUTHORIZED AS JUST, FAIR, AND REASONABLE TO BSF.
FORM 990, PART VI, SECTION B, LINE 15EACH YEAR, THE EXECUTIVE AND COMPENSATION COMMITTEES REVIEW COMPARABLE SALARIES BASED ON A RECOGNIZED STUDY, REVIEW INFORMATION FROM OTHER COMPARABLE ORGANIZATIONS' 990'S, AND REVIEW THE PERFORMANCE OF THE EXECUTIVE DIRECTOR AND THE KEY EMPLOYEES TO DETERMINE IF THE EXISTING SALARIES FALL WITHIN THESE RANGES. AFTER A DELIBERATION OF THIS MATTER, A NEW PROPOSED SALARY AND BENEFIT PACKAGE IS VOTED ON. THE MINUTES OF THE BOARD OF DIRECTORS REFLECT THE NATURE OF THIS PROCESS.
FORM 990, PART VI, SECTION C, LINE 19THE FOUNDATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST AND OTHER POLICIES, AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC ON ITS WEBSITE AND/OR BY REQUEST.
FORM 990, PART XII, LINE 2CTHE ORGANIZATION DID NOT CHANGE EITHER ITS OVERSIGHT PROCESS OR SELECTION PROCESS DURING THE TAX YEAR.

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