BARTH SYNDROME FOUNDATION INC: Form 990, tax year 2014

View the entire original 990 at ProPublica ↗

Organization
BARTH SYNDROME FOUNDATION INC (EIN 22-3755704)
Tax period
2014-01-01 to 2014-12-31
Filed
2015-05-06
IRS object ID
201501269349300340
Schema version
2014v5.0
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)
Return2015-05-06T10:34:33-05:00ReturnTs
Tax Period End2014-12-31TaxPeriodEndDt

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 Begin2014-01-01TaxPeriodBeginDt

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
Phone9148341771PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO BOX 618AddressLine1Txt
CityLARCHMONTCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10538ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonLINDSAY B GROFFPersonNm
Person TitleEXECUTIVE DIRECTORPersonTitleTxt
Phone9148341771PhoneNum
Signature2015-05-04SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonMICHAEL L CECEREPreparerPersonNm
PTINP00236848PTIN
Phone7814070300PhoneNum
Preparation2015-05-04PreparationDt
FieldValueIRS element (for citing)
Tax2014TaxYr
Build TS2016-03-07 17:11:31ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerLINDSAY B GROFFPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO BOX 618AddressLine1Txt
CityLARCHMONTCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10538ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$1,123,620GrossReceiptsAmt
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 Body9VotingMembersGoverningBodyCnt
Voting Members Independent9VotingMembersIndependentCnt
Total Employee5TotalEmployeeCnt
Total Volunteers92TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$824,480PYContributionsGrantsAmt
CY Contributions Grants$1,102,246CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$175PYInvestmentIncomeAmt
CY Investment Income$4,851CYInvestmentIncomeAmt
PY Other Revenue$0PYOtherRevenueAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$824,655PYTotalRevenueAmt
CY Total Revenue$1,107,097CYTotalRevenueAmt
PY Grants And Similar Paid$297,772PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$309,077CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$436,820PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$478,163CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$90,110CYTotalFundraisingExpenseAmt
PY Other Expenses$62,360PYOtherExpensesAmt
CY Other Expenses$408,389CYOtherExpensesAmt
PY Total Expenses$796,952PYTotalExpensesAmt
CY Total Expenses$1,195,629CYTotalExpensesAmt
PY Revenues Less Expenses$27,703PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$88,532CYRevenuesLessExpensesAmt
Total Assets BOY$1,908,550TotalAssetsBOYAmt
Total Assets EOY$1,874,325TotalAssetsEOYAmt
Total Liabilities BOY$62,293TotalLiabilitiesBOYAmt
Total Liabilities EOY$116,317TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$1,846,257NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$1,758,008NetAssetsOrFundBalancesEOYAmt
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$630,454ExpenseAmt
Grant$309,077GrantAmt
DescTHE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2014 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$168,160ExpenseAmt
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 AVAIALABLE. 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$102,421ExpenseAmt
DescFAMILY SERVICES PROGRAM INCLUDES A ROBUST WEBSITE WHICH ALLOWS USERS TO ACCESS THE LATEST RESOURCES; FAMILY OUTREACH SERVICES TO ENCOURAGE AFFECTED FAMILIES TO GET TOGETHER; A LISTSERV WHERE FAMILIES SUPPORT ONE ANOTHER, AS WELL AS PERSONAL PHONE CALLS TO WELCOME NEW FAMILIES AND TO OFFER NON-MEDICAL SUPPORT WHEN NEEDED.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$124,670ExpenseAmt
DescCOSTS RELATING TO AWARENESS.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$124,670TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$1,025,705TotalProgramServiceExpensesAmt
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 Footnote0IncludeFIN48FootnoteInd
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 Document2IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
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
Indoor Tanning Services0IndoorTanningServicesInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members9GoverningBodyVotingMembersCnt
Independent Voting Member9IndependentVotingMemberCnt
Family Or Business RlnYes (1)FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn 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
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 Line1ELLEN BRUNOBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone5086689392PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line192 MILL BROOK AVENUEAddressLine1Txt
CityWALPPOLECityNm
State AbbreviationMAStateAbbreviationCd
ZIP020812163ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (14 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtOfficerOfficerIndHighest Compensated EmployeeHighestCompensatedEmployeeIndFormer Ofcr Director TrusteeFormerOfcrDirectorTrusteeInd
STEPHEN KUGELMANN
BOARD MEMBER2.00Yes (X)$0$0$0
KATHERINE MCCURDY
BOARD MEMBER10.00Yes (X)$0$0$0
SUSAN OSNOS
BOARD MEMBER2.00Yes (X)$0$0$0
SUSAN WILKINS
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
CATHY RITTER
BOARD MEMBER2.00Yes (X)$0$0$0
KEVIN G WOODWARD
BOARD MEMBER2.00Yes (X)$0$0$0
LINDSAY B GROFF
EXECUTIVE DIRECTOR40.00$109,984$0$0Yes (X)
MATTHEW TOTH
DIR OF SCIENCE40.00$147,358$0$7,306Yes (X)
VALERIE BOWEN
PRESIDENT, FORMER40.00$74,831$0$3,772Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$332,173TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$11,078TotalOtherCompensationAmt
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
Government Grants$26,000GovernmentGrantsAmt
All Other Contributions$1,076,246AllOtherContributionsAmt
Noncash Contributions$62,659NoncashContributionsAmt
Total Contributions$1,102,246TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$4,925TotalRevenueColumnAmt
Exclusion$4,925ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$16,449SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$16,523SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$74SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$74TotalRevenueColumnAmt
Related Or Exempt Func Income-$74RelatedOrExemptFuncIncomeAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,107,097TotalRevenueColumnAmt
Related Or Exempt Func Income-$74RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$4,925ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$213,732TotalAmt
Program Services$213,732ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$95,345TotalAmt
Program Services$95,345ProgramServicesAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$431,556TotalAmt
Program Services$337,770ProgramServicesAmt
Management And General$21,286ManagementAndGeneralAmt
Fundraising$72,500FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$14,414TotalAmt
Program Services$13,389ProgramServicesAmt
Management And General$1,025ManagementAndGeneralAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$32,193TotalAmt
Program Services$24,402ProgramServicesAmt
Management And General$1,701ManagementAndGeneralAmt
Fundraising$6,090FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$29,943TotalAmt
Management And General$29,943ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$133,868TotalAmt
Program Services$133,778ProgramServicesAmt
Fundraising$90FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$37,612TotalAmt
Program Services$20,741ProgramServicesAmt
Management And General$12,087ManagementAndGeneralAmt
Fundraising$4,784FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$3,905TotalAmt
Management And General$3,905ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
TRANSPORTATION$88,687$82,326$3,111$3,250
MEALS$67,126$66,853$273
AUDIO VISUAL$17,443$17,443
DUES & FEES$12,980$4,260$5,837$2,883

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$16,825TotalAmt
Program Services$15,666ProgramServicesAmt
Management And General$646ManagementAndGeneralAmt
Fundraising$513FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$1,195,629TotalAmt
Program Services$1,025,705ProgramServicesAmt
Management And General$79,814ManagementAndGeneralAmt
Fundraising$90,110FundraisingAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$1,874,604BOYAmt
EOY$1,730,762EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$21,828BOYAmt
EOY$137,169EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$12,118BOYAmt
EOY$6,394EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$1,908,550BOYAmt
EOY$1,874,325EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$23,478BOYAmt
EOY$16,400EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$38,815BOYAmt
EOY$99,917EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$62,293BOYAmt
EOY$116,317EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$911,867BOYAmt
EOY$530,698EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$934,390BOYAmt
EOY$1,227,310EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,846,257BOYAmt
EOY$1,758,008EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,908,550BOYAmt
EOY$1,874,325EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$88,532ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$283NetUnrlzdGainsLossesInvstAmt
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$769,756CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$706,090CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$871,480CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$824,480CurrentTaxYearMinus1YearAmt
Current Tax Year$1,102,246CurrentTaxYearAmt
Total$4,274,052TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$769,756CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$706,090CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$871,480CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$824,480CurrentTaxYearMinus1YearAmt
Current Tax Year$1,102,246CurrentTaxYearAmt
Total$4,274,052TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,486,920SubstantialContributorsTotAmt
Public Support Total170$2,787,132PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$26,121CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$11,094CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$7,975CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$175CurrentTaxYearMinus1YearAmt
Current Tax Year$4,851CurrentTaxYearAmt
Total$50,216TotalAmt
FieldValueIRS element (for citing)
Total Support$4,324,268TotalSupportAmt
Public Support CY1700.64450PublicSupportCY170Pct
Public Support PY1700.58460PublicSupportPY170Pct
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
Total Rev Etc Audited Fincl Stmt$1,107,380TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$283NetUnrealizedGainsInvstAmt
Revenue Not Reported$283RevenueNotReportedAmt
Revenue Subtotal$1,107,097RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$1,107,097TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$1,195,629TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$1,195,629ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$1,195,629TotalExpensesPerForm990Amt

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records Maintained0GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp

FieldValueIRS element (for citing)
RegionNORTH AMERICARegionTxt
Offices0OfficesCnt
Employee0EmployeeCnt
Type Of Activities ConductedRESEARCH GRANT AWARDEDTypeOfActivitiesConductedTxt
Region Total Expenditures$43,972RegionTotalExpendituresAmt
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continutation Total Office0ContinutationTotalOfficeCnt
Continutation Total Employee0ContinutationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$43,972SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$43,972TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
NORTH AMERICARELATIONSHIP BETWEEN MEMBRANE PHYSICAL PROPERTIES AND THE ACTION OF TAFAZZIN.$18,975CHECK
NORTH AMERICATAFAZZIN KNOCKDOWN ALTERS HEPATIC LIPID METABOLISM.$24,997CHECK
FieldValueIRS element (for citing)
Total501c3 Org2Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt
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 (13 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdIRC SectionIRCSectionDescPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtRecipient EINRecipientEIN
NY UNIVERSITY MEDICAL CENTER
550 FIRST AVENUENEW YORKNY10016N/ARESEARCH
UNIVERISTY OF IOWA
2222 OLD HIGHWAY 218 SIOWA CITYIA52242N/ARESEARCH$20,000
CHILDREN'S HOSPITAL AND RESEARH CENTER AT OAKLAND
747 52ND STREETOAKLANDCA94609501(C)(3)RESEARCH940382330
BOSTON CHILDREN'S HOSPITAL
300 LONGWOOD AVENUEBOSTONMA02115501(C)(3)RESEARCH$50,000042774441
UNIVERISTY OF WASHINGTON
4311 11TH AVE NE STE 100SEATTLEWA98105RESEARCH$25,000916001537
UNIVERSITY OF WASHINGTON
700 ROSEDALE AVE BOX 1034ST LOUISMO631121408N/ARESEARCH430653611
KENNEDY KRIEGER INSTITUTE
707 NORTH BROADWAYBALTIMOREMD21205501(C)(3)RESEARCH521524965
UNIVERSITY OF CALIFORNIA AT SAN DIEGO
9500 GILMAN DRIVELA JOLLACA92093RESEARCH956006144
PENNSYLVANIA STATE UNIVERSITY SCHOOL OF MEDICINE
500 UNIVERSITY DRIVEHERSHEYPA17033501(C)(3)RESEARCH251854772
COLORADO STATE UNIVERSITY
1062 CAMPUS DELIVERYFORT COLLINSCO805231062N/ARESEARCH
WAYNE STATE UNIVERSITY
42 WEST WARRENT AVENUEDETROITMI48202N/ARESEARCH$50,000386028429
UNIVERSITY OF CONNECTICUT
233 GLENBROOK RD U-4231STORRSCT062694231N/ARESEARCH$50,000060772160
VIRGINIA COMMONWEALTH UNIVERSITY
PO BOX 843039RICHMONDVA222843039N/ARESEARCH$18,732

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 (3 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
LINDSAY B GROFF
EXECUTIVE DIRECTOR$109,984$0$0$0$0$0$0$0$0$0$109,984$0$0$0
MATTHEW TOTH
DIR OF SCIENCE$147,358$0$0$0$0$0$0$0$7,306$0$154,664$0$0$0
VALERIE BOWEN
PRESIDENT, FORMER$74,831$0$0$0$0$0$0$0$3,772$0$78,603$0$0$0

Schedule M IRS990ScheduleM

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution5ContributionCnt
Noncash Contributions Rpt F990$62,659NoncashContributionsRptF990Amt
Method Of Determining RevenuesCOST ON DAY OF DONATIONMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Form8283 Received0Form8283ReceivedCnt
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC Gifts0ReviewProcessUnusualNCGiftsInd
Third Parties Used0ThirdPartiesUsedInd

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (7 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION A, LINE 2JOHN AND SUSAN WILKINS ARE MOTHER AND SON.
FORM 990, PART VI, SECTION B, LINE 11THE 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 IX, LINE 11GCONSULTING: PROGRAM SERVICE EXPENSES 133,778. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 90. TOTAL EXPENSES 133,868.
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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