BETA

BARTH SYNDROME FOUNDATION INC: Form 990, tax year 2020

View the entire original 990 at ProPublica ↗

Organization
BARTH SYNDROME FOUNDATION INC (EIN 22-3755704)
Tax period
2020-01-01 to 2020-12-31
Filed
2021-08-12
IRS object ID
202122249349300702
Schema version
2020v4.1
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)
Return2021-08-12T07:47:18-05:00ReturnTs
Tax Period End2020-12-31TaxPeriodEndDt

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 Begin2020-01-01TaxPeriodBeginDt

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
Phone8556622784PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line12005 PALMER AVENUE NO 1033AddressLine1Txt
CityLARCHMONTCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10538ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonEMILY MILLIGANPersonNm
Person TitleEXECUTIVE DIRECTORPersonTitleTxt
Phone8556622784PhoneNum
Signature2021-08-09SignatureDt
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

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonEDWARD K BALTAZAR CPAPreparerPersonNm
PTINP00988228PTIN
Phone2014039750PhoneNum

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

FieldValueIRS element (for citing)
Trusted Customer2TrustedCustomerCd
Authentication Assurance LevelAAL1AuthenticationAssuranceLevelCd
Identity Assurance LevelIAL1IdentityAssuranceLevelCd
FieldValueIRS element (for citing)
Tax2020TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerEMILY MILLIGANPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line12005 PALMER AVENUE NO 1033AddressLine1Txt
CityLARCHMONTCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10538ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$1,914,922GrossReceiptsAmt
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 Body12VotingMembersGoverningBodyCnt
Voting Members Independent12VotingMembersIndependentCnt
Total Employee5TotalEmployeeCnt
Total Volunteers200TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$935,649PYContributionsGrantsAmt
CY Contributions Grants$1,162,206CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$200,113PYInvestmentIncomeAmt
CY Investment Income$104,959CYInvestmentIncomeAmt
PY Other Revenue$0PYOtherRevenueAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$1,135,762PYTotalRevenueAmt
CY Total Revenue$1,267,165CYTotalRevenueAmt
PY Grants And Similar Paid$416,917PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$201,587CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$561,697PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$541,806CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$78,616CYTotalFundraisingExpenseAmt
PY Other Expenses$322,762PYOtherExpensesAmt
CY Other Expenses$258,540CYOtherExpensesAmt
PY Total Expenses$1,301,376PYTotalExpensesAmt
CY Total Expenses$1,001,933CYTotalExpensesAmt
PY Revenues Less Expenses-$165,614PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$265,232CYRevenuesLessExpensesAmt
Total Assets BOY$4,993,243TotalAssetsBOYAmt
Total Assets EOY$5,553,199TotalAssetsEOYAmt
Total Liabilities BOY$286,825TotalLiabilitiesBOYAmt
Total Liabilities EOY$272,560TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$4,706,418NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$5,280,639NetAssetsOrFundBalancesEOYAmt
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$389,230ExpenseAmt
Grant$151,587GrantAmt
DescTHE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2020 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)
DescTHIS CONFERENCE, HELD EVERY TWO YEARS, 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 2020 DUE TO COVID-19, THE CONFERENCE CONTINUES TO BE A KEY PILLAR.)Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$50,000ExpenseAmt
Grant$50,000GrantAmt
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$336,261ExpenseAmt
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$336,261TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$775,491TotalProgramServiceExpensesAmt
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 ContriYes (1)DeductibleNonCashContriInd
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 Document7IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee5EmployeeCnt
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
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
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 Member12IndependentVotingMemberCnt
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 AVEAddressLine1Txt
CityLARCHMONTCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10538ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (17 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtOfficerOfficerIndHighest Compensated EmployeeHighestCompensatedEmployeeInd
MATTHEW BLUMENTHAL
BOARD MEMBER2.00Yes (X)$0$0$0
FLORENCE MANNES
BOARD MEMBER2.00Yes (X)$0$0$0
MEGAN BRANAGH
BOARD MEMBER2.00Yes (X)$0$0$0
DAVID AXELROD MD
BOARD MEMBER2.00Yes (X)$0$0$0
BRUCE J DEVELLE
BOARD MEMBER2.00Yes (X)$0$0$0
NICOLE DERUSHA-MACKEY
BOARD MEMBER2.00Yes (X)$0$0$0
BRANDI DAGUE
BOARD MEMBER2.00Yes (X)$0$0$0
MICHELLE FLOREZ
BOARD MEMBER2.00Yes (X)$0$0$0
PETER VAN LOO
BOARD MEMBER2.00Yes (X)$0$0$0
NINA RUSSELL
BOARD MEMBER2.00Yes (X)$0$0$0
SUSAN A MCCORMACK
CHAIR (FORMER)2.00Yes (X)$0$0$0Yes (X)
KATHERINE MCCURDY
CHAIR2.00Yes (X)$0$0$0Yes (X)
KEVIN G WOODWARD
TREASURER2.00Yes (X)$0$0$0Yes (X)
JOHN WILKINS
SECRETARY (FORMER)2.00Yes (X)$0$0$0Yes (X)
JAMES BAFFA
ACTING SECRETARY2.00Yes (X)$0$0$0Yes (X)
EMILY MILLIGAN
EXECUTIVE DIRECTOR35.00$184,188$0$10,812Yes (X)
ERIK LONTOK
DIRECTOR OF RESEARCH35.00$108,881$0$6,119Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$293,069TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$16,931TotalOtherCompensationAmt
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
Government Grants$92,673GovernmentGrantsAmt
All Other Contributions$1,069,533AllOtherContributionsAmt
Noncash Contributions$125,245NoncashContributionsAmt
Total Contributions$1,162,206TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$98,869TotalRevenueColumnAmt
Exclusion$98,869ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$653,847SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$647,757SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$6,090SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$6,090TotalRevenueColumnAmt
Exclusion$6,090ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,267,165TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$104,959ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$201,587TotalAmt
Program Services$201,587ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$205,812TotalAmt
Program Services$123,487ProgramServicesAmt
Management And General$30,872ManagementAndGeneralAmt
Fundraising$51,453FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$280,943TotalAmt
Program Services$263,048ProgramServicesAmt
Management And General$15,945ManagementAndGeneralAmt
Fundraising$1,950FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$24,203TotalAmt
Program Services$19,552ProgramServicesAmt
Management And General$2,587ManagementAndGeneralAmt
Fundraising$2,064FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$30,848TotalAmt
Program Services$27,167ProgramServicesAmt
Management And General$2,831ManagementAndGeneralAmt
Fundraising$850FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$51,018TotalAmt
Management And General$51,018ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$113,128TotalAmt
Program Services$104,128ProgramServicesAmt
Fundraising$9,000FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$73,073TotalAmt
Program Services$26,090ProgramServicesAmt
Management And General$34,341ManagementAndGeneralAmt
Fundraising$12,642FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$5,639TotalAmt
Program Services$5,542ProgramServicesAmt
Fundraising$97FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$3,204TotalAmt
Management And General$3,204ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (3 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
DUES AND FEES$11,026$3,998$7,028
MISCELLANEOUS$1,092$892$200
AUDIO VISUAL$360$360

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$1,001,933TotalAmt
Program Services$775,491ProgramServicesAmt
Management And General$147,826ManagementAndGeneralAmt
Fundraising$78,616FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$384,847BOYAmt
EOY$311,285EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$67,917BOYAmt
EOY$20,000EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$30,649BOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$37,285BOYAmt
EOY$60,177EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$0LandBldgEquipCostOrOtherBssAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$4,472,545BOYAmt
EOY$5,161,737EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$4,993,243BOYAmt
EOY$5,553,199EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$26,869BOYAmt
EOY$59,227EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$259,580BOYAmt
EOY$186,150EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$376BOYAmt
EOY$27,183EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$286,825BOYAmt
EOY$272,560EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$914,227BOYAmt
EOY$1,482,290EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$3,792,191BOYAmt
EOY$3,798,349EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,706,418BOYAmt
EOY$5,280,639EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,993,243BOYAmt
EOY$5,553,199EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$265,232ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$332,529NetUnrlzdGainsLossesInvstAmt
Investment Expense-$23,540InvestmentExpenseAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
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$1,026,616CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$865,365CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,997,067CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$935,649CurrentTaxYearMinus1YearAmt
Current Tax Year$1,162,206CurrentTaxYearAmt
Total$5,986,903TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,026,616CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$865,365CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,997,067CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$935,649CurrentTaxYearMinus1YearAmt
Current Tax Year$1,162,206CurrentTaxYearAmt
Total$5,986,903TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$2,204,894SubstantialContributorsTotAmt
Public Support Total170$3,782,009PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$55,791CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$97,899CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$137,262CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$200,113CurrentTaxYearMinus1YearAmt
Current Tax Year$104,959CurrentTaxYearAmt
Total$596,024TotalAmt
FieldValueIRS element (for citing)
Total Support$6,582,927TotalSupportAmt
Gross Receipts Rltd Activities$156,766GrossReceiptsRltdActivitiesAmt
Public Support CY1700.57450PublicSupportCY170Pct
Public Support PY1700.45670PublicSupportPY170Pct
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$1,576,154TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$332,529NetUnrealizedGainsInvstAmt
Revenue Not Reported$332,529RevenueNotReportedAmt
Revenue Subtotal$1,243,625RevenueSubtotalAmt
Investment Expenses Not Incld$23,540InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$23,540RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$1,267,165TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$1,001,933TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$1,001,933ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$1,001,933TotalExpensesPerForm990Amt

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 (5 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
BOSTON CHILDREN'S HOSPITAL
300 LONGWOOD AVEBOSTONMA02115501(C)(3)$55,000ESSENTIAL ACTIVITIES OF TAFAZZIN THAT ARE INDEPENDENT OF CARDIOLIPIN REMODELING
STONY BROOK UNIVERSITY
100 NICOLLS ROADSTONY BROOKNY11794501(C)(3)$50,000STRUCTURAL AND BIOPHYSICAL STUDIES OF TAFAZZIN
TEXAS A&M
400 BIZZELL STCOLLEGE STATIONTX77843501(C)(3)$50,000CARDIOLIPIN REQUIREMENT FOR MITOCHONDRIAL CALCIUM IMPORT
UNIVERSITY OF CONNECTICUT
91 NORTH EAGLEVILLE ROADSTORRSCT06269501(C)(3)$50,000DEVELOPMENT OF MITOCHONDRIA-TARGETED PEPTIDE COMPOUNDS AS BARTH SYNDROME THERAPEUTICS
DUKE UNIVERSITY
2301 ERWIN ROADDURHAMNC27708501(C)(3)-$3,413REFUND RECEIVED OF PRIOR YEAR GRANT

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$184,188BaseCompensationFilingOrgAmt
Compensation Based On Rltd Orgs$0CompensationBasedOnRltdOrgsAmt
Bonus Filing Organization$0BonusFilingOrganizationAmount
Bonus Related Organizations$0BonusRelatedOrganizationsAmt
Other Compensation Filing Org$0OtherCompensationFilingOrgAmt
Other Compensation Rltd Orgs$0OtherCompensationRltdOrgsAmt
Deferred Compensation Flng Org$0DeferredCompensationFlngOrgAmt
Deferred Comp Rltd Orgs$0DeferredCompRltdOrgsAmt
Nontaxable Benefits Filing Org$10,812NontaxableBenefitsFilingOrgAmt
Nontaxable Benefits Rltd Orgs$0NontaxableBenefitsRltdOrgsAmt
Total Compensation Filing Org$195,000TotalCompensationFilingOrgAmt
Total Compensation Rltd Orgs$0TotalCompensationRltdOrgsAmt
Comp Report Prior990 Filing Org$0CompReportPrior990FilingOrgAmt
Comp Report Prior990 Rltd Orgs$0CompReportPrior990RltdOrgsAmt

Schedule M IRS990ScheduleM

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution4ContributionCnt
Noncash Contributions Rpt F990$125,245NoncashContributionsRptF990Amt
Method Of Determining RevenuesFMV ON DATE RECEIVEDMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC Gifts0ReviewProcessUnusualNCGiftsInd
Third Parties Used0ThirdPartiesUsedInd

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 IX, LINE 11GOTHER: PROGRAM SERVICE EXPENSES 104,128. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 9,000. TOTAL EXPENSES 113,128.

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