BARTH SYNDROME FOUNDATION INC: Form 990, tax year 2016

View the entire original 990 at ProPublica ↗

Organization
BARTH SYNDROME FOUNDATION INC (EIN 22-3755704)
Tax period
2016-01-01 to 2016-12-31
Filed
2017-05-03
IRS object ID
201701239349300030
Schema version
2016v3.0
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)
Return2017-05-03T10:32:45-05:00ReturnTs
Tax Period End2016-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN042088368PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1GRAY GRAY & GRAY LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line1150 ROYALL STREET SUITE 102AddressLine1Txt
CityCANTONCityNm
State AbbreviationMAStateAbbreviationCd
ZIP02021ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2016-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN223755704EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1THE BARTH SYNDROME FOUNDATION INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlBARTBusinessNameControlTxt
Phone8556622784PhoneNum

US Address USAddress

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

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonLINDSAY B GROFFPersonNm
Person TitleEXECUTIVE DIRECTORPersonTitleTxt
Phone8556622784PhoneNum
Signature2017-05-02SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonMICHAEL L CECEREPreparerPersonNm
PTINP00236848PTIN
Phone7814070300PhoneNum
Preparation2017-05-02PreparationDt

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address50.234.152.46IPv4AddressTxt
FieldValueIRS element (for citing)
IP2017-05-02IPDt
IP Tm15:33:55IPTm
IP TimezoneEDIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id4CB60F71B332EFE142C1B35711A0205FB6B82728AtSubmissionCreationDeviceId
At Submission Filing Device Id4CB60F71B332EFE142C1B35711A0205FB6B82728AtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2016TaxYr
Build TS2021-01-29 14:40:06ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerLINDSAY B GROFFPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line12005 PALMER AVE NO 1033AddressLine1Txt
CityLARCHMONTCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10538ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$1,168,033GrossReceiptsAmt
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 FAMILIES WITH CHILDREN SUFFERING FROM BARTH SYNDROME.ActivityOrMissionDesc
Voting Members Governing Body12VotingMembersGoverningBodyCnt
Voting Members Independent12VotingMembersIndependentCnt
Total Employee4TotalEmployeeCnt
Total Volunteers200TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$3,138,821PYContributionsGrantsAmt
CY Contributions Grants$1,026,616CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$26,632PYInvestmentIncomeAmt
CY Investment Income$55,791CYInvestmentIncomeAmt
PY Other Revenue$0PYOtherRevenueAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$3,165,453PYTotalRevenueAmt
CY Total Revenue$1,082,407CYTotalRevenueAmt
PY Grants And Similar Paid$551,043PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$347,254CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$486,057PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$476,851CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$80,093CYTotalFundraisingExpenseAmt
PY Other Expenses$195,210PYOtherExpensesAmt
CY Other Expenses$407,406CYOtherExpensesAmt
PY Total Expenses$1,232,310PYTotalExpensesAmt
CY Total Expenses$1,231,511CYTotalExpensesAmt
PY Revenues Less Expenses$1,933,143PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$149,104CYRevenuesLessExpensesAmt
Total Assets BOY$3,913,906TotalAssetsBOYAmt
Total Assets EOY$3,793,936TotalAssetsEOYAmt
Total Liabilities BOY$240,827TotalLiabilitiesBOYAmt
Total Liabilities EOY$216,379TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$3,673,079NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$3,577,557NetAssetsOrFundBalancesEOYAmt
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$494,891ExpenseAmt
Grant$271,154GrantAmt
DescTHE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2016 WAS COMPRISED OF A) THE BSF RESEARCH GRANT 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$164,146ExpenseAmt
DescTHIS CONFERENCE, HELD EVERY TWO YEARS, BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGETHER IN ONE PLACE AT ONE 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 PROVIDING INFORMATION AND TISSUE SAMPLES.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$133,394ExpenseAmt
Grant$76,100GrantAmt
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$248,031ExpenseAmt
DescCOSTS RELATING TO AWARENESS.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$248,031TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$1,040,462TotalProgramServiceExpensesAmt
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
Temp Or Permanent Endowments0TempOrPermanentEndowmentsInd
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 ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
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 With Officer Ent0BusinessRlnWithOfficerEntInd
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 Document5IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee4EmployeeCnt
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
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 FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
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
Other WebsiteYes (X)OtherWebsiteInd
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)
Phone5164597165PhoneNum

US Address USAddress

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

Form990 Part VII Section A Form990PartVIISectionAGrp (15 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtOfficerOfficerIndHighest Compensated EmployeeHighestCompensatedEmployeeIndFormer Ofcr Director TrusteeFormerOfcrDirectorTrusteeInd
MATTHEW BLUMENTHAL
BOARD MEMBER2.00Yes (X)$0$0$0
FLORENCE MANNES
BOARD MEMBER2.00Yes (X)$0$0$0
SUSAN OSNOS
BOARD MEMBER2.00Yes (X)$0$0$0
RANDY BUDDEMEYER
TREASURER5.00Yes (X)$0$0$0Yes (X)
MARCUS SERNEL
CHAIRMAN10.00Yes (X)$0$0$0Yes (X)
SUSAN A MCCORMACK
SECRETARY2.00Yes (X)$0$0$0Yes (X)
JOHN WILKINS
BOARD MEMBER2.00Yes (X)$0$0$0
DAVID AXELROD MD
BOARD MEMBER2.00Yes (X)$0$0$0
CATHARINE LYNNE RITTER
BOARD MEMBER2.00Yes (X)$0$0$0
KEVIN G WOODWARD
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
LINDSAY B GROFF
EXECUTIVE DIRECTOR40.00$120,666$0$233Yes (X)
MATTHEW TOTH
DIR OF SCIENCE40.00$152,870$0$11,192Yes (X)
VALERIE BOWEN
PRESIDENT, FORMER40.00$79,719$0$4,093Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$353,255TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$15,518TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K2IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedYes (1)FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
All Other Contributions$1,026,616AllOtherContributionsAmt
Noncash Contributions$66,323NoncashContributionsAmt
Total Contributions$1,026,616TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$56,492TotalRevenueColumnAmt
Exclusion$56,492ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$84,925SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$85,626SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$701SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$701TotalRevenueColumnAmt
Related Or Exempt Func Income-$701RelatedOrExemptFuncIncomeAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,082,407TotalRevenueColumnAmt
Related Or Exempt Func Income-$701RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$56,492ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$347,254TotalAmt
Program Services$347,254ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$200,385TotalAmt
Program Services$152,119ProgramServicesAmt
Management And General$6,033ManagementAndGeneralAmt
Fundraising$42,233FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$219,551TotalAmt
Program Services$202,881ProgramServicesAmt
Management And General$16,670ManagementAndGeneralAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$26,495TotalAmt
Program Services$22,307ProgramServicesAmt
Management And General$1,570ManagementAndGeneralAmt
Fundraising$2,618FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$30,420TotalAmt
Program Services$25,366ProgramServicesAmt
Management And General$1,694ManagementAndGeneralAmt
Fundraising$3,360FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$34,533TotalAmt
Management And General$34,533ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$40,102TotalAmt
Program Services$19,981ProgramServicesAmt
Management And General$121ManagementAndGeneralAmt
Fundraising$20,000FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$65,601TotalAmt
Program Services$21,431ProgramServicesAmt
Management And General$38,963ManagementAndGeneralAmt
Fundraising$5,207FundraisingAmt

Interest InterestGrp

FieldValueIRS element (for citing)
Total$4,106TotalAmt
Management And General$4,106ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtFundraisingFundraisingAmtManagement And GeneralManagementAndGeneralAmt
TRANSPORTATION$82,098$78,852$3,246
THERAPY DEVELOPMENT$67,167$67,167
MEALS$62,502$62,064$418$20
AUDIO VISUAL$19,894$19,894

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$31,403TotalAmt
Program Services$21,146ProgramServicesAmt
Management And General$7,246ManagementAndGeneralAmt
Fundraising$3,011FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$1,231,511TotalAmt
Program Services$1,040,462ProgramServicesAmt
Management And General$110,956ManagementAndGeneralAmt
Fundraising$80,093FundraisingAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$1,592,360BOYAmt
EOY$1,188,645EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$2,352BOYAmt
EOY$7,898EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$16,495BOYAmt
EOY$13,011EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$1,302,792BOYAmt
EOY$2,584,382EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
BOY$999,907BOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$3,913,906BOYAmt
EOY$3,793,936EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$16,726BOYAmt
EOY$20,904EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$224,101BOYAmt
EOY$195,475EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$240,827BOYAmt
EOY$216,379EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$700,727BOYAmt
EOY$918,886EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$2,972,352BOYAmt
EOY$2,658,671EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$3,673,079BOYAmt
EOY$3,577,557EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$3,913,906BOYAmt
EOY$3,793,936EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$149,104ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$53,582NetUnrlzdGainsLossesInvstAmt
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$871,480CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$824,480CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,102,246CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,138,821CurrentTaxYearMinus1YearAmt
Current Tax Year$1,026,616CurrentTaxYearAmt
Total$6,963,643TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$871,480CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$824,480CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,102,246CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,138,821CurrentTaxYearMinus1YearAmt
Current Tax Year$1,026,616CurrentTaxYearAmt
Total$6,963,643TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$3,297,122SubstantialContributorsTotAmt
Public Support Total170$3,666,521PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$7,975CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$175CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,851CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$26,632CurrentTaxYearMinus1YearAmt
Current Tax Year$55,791CurrentTaxYearAmt
Total$95,424TotalAmt
FieldValueIRS element (for citing)
Total Support$7,059,067TotalSupportAmt
Public Support CY1700.51940PublicSupportCY170Pct
Public Support PY1700.47610PublicSupportPY170Pct
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$1,135,989TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$53,582NetUnrealizedGainsInvstAmt
Revenue Not Reported$53,582RevenueNotReportedAmt
Revenue Subtotal$1,082,407RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$1,082,407TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$1,231,511TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$1,231,511ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$1,231,511TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART X, LINE 2:FormAndLineReferenceDesc
ExplanationTHE FOUNDATION IS REQUIRED TO RECOGNIZE THE FINANCIAL STATEMENT IMPACT OF A TAX POSITION UNLESS IT IS MORE LIKELY THAN NOT THAT THE POSITION WILL BE SUSTAINED UPON EXAMINATION. THE FOUNDATION RECOGNIZES INTEREST AND PENALTIES RELATED TO ANY UNRECOGNIZED TAX BENEFITS IN INCOME TAX EXPENSE. THE FOUNDATION HAS NO AMOUNTS ACCRUED FOR INTEREST AND PENALTIES AS OF DECEMBER 31, 2016. BASED ON THE EVALUATION OF THE FOUNDATION'S TAX POSITIONS, MANAGEMENT BELIEVES ALL POSITIONS TAKEN WOULD BE UPHELD UNDER AN EXAMINATION. THEREFORE, NO PROVISION FOR THE EFFECTS OF UNCERTAIN TAX POSITIONS HAS BEEN RECORDED FOR THE YEAR ENDED DECEMBER 31, 2016.ExplanationTxt

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)

RegionRegionTxtOfficesOfficesCntEmployeeEmployeeCntType Of Activities ConductedTypeOfActivitiesConductedTxtSpecific Services ProvidedSpecificServicesProvidedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
NORTH AMERICA00GRANTS TO RECIPIENTSRESEARCH$21,154
EUROPE (INCLUDING ICELAND & GREENLAND)00GRANTS TO RECIPIENTSRESEARCH$76,100
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continutation Total Office0ContinutationTotalOfficeCnt
Continutation Total Employee0ContinutationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$97,254SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$97,254TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
NORTH AMERICARESEARCH$21,154CHECK
EUROPE (INCLUDING ICELAND & GREENLAND)RESEARCH$26,100CHECK
EUROPE (INCLUDING ICELAND & GREENLAND)RESEARCH$50,000CHECK
FieldValueIRS element (for citing)
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

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 RECIPIENT. 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 FINDINGS.ExplanationTxt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (6 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
UNIVERISTY OF TEXAS HEALTH SCIENCES CENTER
7703 FLOYD CURL DRSAN ANTONIOTX78229741586031501(C)(3)$100,000RESEARCH
EMORY UNIVERSITY
1599 CLIFTON ROADATLANTAGA303224250580566256501(C)(3)$50,000RESEARCH
WAYNE STATE UNIVERSITY
42 WEST WARRENT AVENUEDETROITMI48202386028429$50,000RESEARCH
(no name)
RESEARCH
(no name)
RESEARCH
WASHINGTON UNIVERSITY SCHOOL OF MEDICINE
660 S EUCLID AVEST LOUISMO63110143065361501(C)(3)$50,000RESEARCH

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 RECIPIENT. 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 FINDINGS.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 (2 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
MATTHEW TOTH
DIR OF SCIENCE$152,870$0$0$0$0$0$0$0$11,192$0$164,062$0$0$0
VALERIE BOWEN
PRESIDENT, FORMER$79,719$0$0$0$0$0$0$0$4,093$0$83,812$0$0$0

Schedule M IRS990ScheduleM

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution7ContributionCnt
Noncash Contributions Rpt F990$66,323NoncashContributionsRptF990Amt
Method Of Determining RevenuesCOST ON DAY OF DONATIONMethodOfDeterminingRevenuesTxt
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 RESPONSIBILITY 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, REVIEWS INFORMATION FROM OTHER COMPARABLE ORGANIZATIONS' 990'S, AND REVIEWS 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 2C:THERE HAS BEEN NO CHANGE FROM THE PRIOR YEAR IN THE OVERSIGHT OF THE AUDIT AND SELECTION OF THE INDEPENDENT ACCOUNTANT. THE FOUNDATION HAS AN AUDIT CCOMMITTEE COMPRISED OF THE CHAIRMAN, TREASURER AND SECRETARY. THE AUDIT COMMITTEE IS RESPONSBILE FOR THE SELECTION OF THE INDEPENDENT ACCOUNTANT AND FOR THE OVERSIGHT OF THE AUDIT OF THE FINANCIAL STATEMENTS.

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