BARTH SYNDROME FOUNDATION INC: Form 990, tax year 2012
View the entire original 990 at ProPublica ↗
- Organization
- BARTH SYNDROME FOUNDATION INC (EIN 22-3755704)
- Tax period
- 2012-01-01 to 2012-12-31
- Filed
- 2013-03-28
- IRS object ID
- 201320879349300237
- Schema version
- 2012v2.1
- 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Timestamp | 2013-03-28T16:53:30-05:00 | Timestamp |
| Tax Period End Date | 2012-12-31 | TaxPeriodEndDate |
Preparer Firm PreparerFirm
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 042088368 | EIN |
Preparer Firm Business Name PreparerFirmBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | GRAY GRAY & GRAY LLP | BusinessNameLine1 |
Preparer Firm US Address PreparerFirmUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 34 SOUTHWEST PARK | AddressLine1 |
| City | WESTWOOD | City |
| State | MA | State |
| ZIP Code | 020901548 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnType |
| Tax Period Begin Date | 2012-01-01 | TaxPeriodBeginDate |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 223755704 | EIN |
Name Name
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | THE BARTH SYNDROME FOUNDATION INC | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Control | BART | NameControl |
| Phone | 9148341771 | Phone |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 618 | AddressLine1 |
| City | LARCHMONT | City |
| State | NY | State |
| ZIP Code | 10538 | ZIPCode |
Officer Officer
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name | LINDSAY B GROFF | Name |
| Title | EXECUTIVE DIRECTOR | Title |
| Phone | 9148341771 | Phone |
| Date Signed | 2013-03-14 | DateSigned |
| Authorize Third Party | 1 | AuthorizeThirdParty |
Preparer Preparer
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name | MICHAEL L CECERE | Name |
| PTIN | P00236848 | PTIN |
| Phone | 7814070300 | Phone |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax Year | 2012 | TaxYear |
| Build TS | 2016-02-25 16:41:14Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Of Principal Officer Person | LINDSAY B GROFF | NameOfPrincipalOfficerPerson |
| Gross Receipts | 879455 | GrossReceipts |
| Group Return For Affiliates | 0 | GroupReturnForAffiliates |
| Organization501c3 | X | Organization501c3 |
| Web Site | WWW.BARTHSYNDROME.ORG | WebSite |
| Type Of Organization Corporation | X | TypeOfOrganizationCorporation |
| Year Formation | 2000 | YearFormation |
| State Legal Domicile | DE | StateLegalDomicile |
| Activity Or Mission Description | 1) 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. | ActivityOrMissionDescription |
| Nbr Voting Members Governing Body | 11 | NbrVotingMembersGoverningBody |
| Nbr Independent Voting Members | 11 | NbrIndependentVotingMembers |
| Total Nbr Employees | 4 | TotalNbrEmployees |
| Total Nbr Volunteers | 40 | TotalNbrVolunteers |
| Total Gross UBI | 0 | TotalGrossUBI |
| Net Unrelated Business Txbl Income | 0 | NetUnrelatedBusinessTxblIncome |
| Contributions Grants Prior Year | 706090 | ContributionsGrantsPriorYear |
| Contributions Grants Current Year | 871480 | ContributionsGrantsCurrentYear |
| Program Service Revenue Prior Year | 0 | ProgramServiceRevenuePriorYear |
| Program Service Revenue CY | 0 | ProgramServiceRevenueCY |
| Investment Income Prior Year | 11094 | InvestmentIncomePriorYear |
| Investment Income Current Year | 7975 | InvestmentIncomeCurrentYear |
| Other Revenue Prior Year | 0 | OtherRevenuePriorYear |
| Other Revenue Current Year | 0 | OtherRevenueCurrentYear |
| Total Revenue Prior Year | 717184 | TotalRevenuePriorYear |
| Total Revenue Current Year | 879455 | TotalRevenueCurrentYear |
| Grants And Similar Amnts Prior Year | 223765 | GrantsAndSimilarAmntsPriorYear |
| Grants And Similar Amnts CY | 315823 | GrantsAndSimilarAmntsCY |
| Benefits Paid To Members Prior Year | 0 | BenefitsPaidToMembersPriorYear |
| Benefits Paid To Members CY | 0 | BenefitsPaidToMembersCY |
| Salaries Etc Prior Year | 332846 | SalariesEtcPriorYear |
| Salaries Etc Current Year | 412284 | SalariesEtcCurrentYear |
| Total Prof Fundrsng Exp Prior Year | 0 | TotalProfFundrsngExpPriorYear |
| Total Prof Fundrsng Exp CY | 0 | TotalProfFundrsngExpCY |
| Total Fundrsng Exp Current Year | 39521 | TotalFundrsngExpCurrentYear |
| Other Expense Prior Year | 196055 | OtherExpensePriorYear |
| Other Expenses Current Year | 228202 | OtherExpensesCurrentYear |
| Total Expenses Prior Year | 752666 | TotalExpensesPriorYear |
| Total Expenses Current Year | 956309 | TotalExpensesCurrentYear |
| Revenues Less Expenses Prior Year | -35482 | RevenuesLessExpensesPriorYear |
| Revenues Less Expenses CY | -76854 | RevenuesLessExpensesCY |
| Total Assets BOY | 1994513 | TotalAssetsBOY |
| Total Assets EOY | 1909785 | TotalAssetsEOY |
| Total Liabilities BOY | 99302 | TotalLiabilitiesBOY |
| Total Liabilities EOY | 90438 | TotalLiabilitiesEOY |
| Net Assets Or Fund Balances BOY | 1895211 | NetAssetsOrFundBalancesBOY |
| Net Assets Or Fund Balances EOY | 1819347 | NetAssetsOrFundBalancesEOY |
| Info In Schedule O Part III | X | InfoInScheduleOPartIII |
| Mission Description | THE 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. | MissionDescription |
| Significant New Program Services | 0 | SignificantNewProgramServices |
| Significant Change | 0 | SignificantChange |
| Expense | 477532 | Expense |
| Grants | 315823 | Grants |
| Description | THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2012 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. | Description |
Activity2 Activity2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 82042 | Expense |
| Description | THE BSF COMMUNICATIONS PROGRAM IS COMPRISED OF BI-ANNUAL NEWSLETTERS IN THE SPRING AND THE FALL OF EACH YEAR, AND ANNUAL REPORT, AN UPDATED HEALTHCARE BROCHURE, AND VARIOUS POSTCARD MAILINGS PROMOTING THE BSF INTERNATIONAL CONFERENCE AND OTHER KEY EVENTS. | Description |
Activity3 Activity3
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 123516 | Expense |
| Description | THIS CONFERENCE, HELD EVERY TWO YEARS, BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGETHER IN ONE PLACE AT ONE TIME SO THAT THEY ALL MAY COLLABORATE AND SHARE THEIR KNOWLEDGE TO GAIN A GREATER UNDERSTANDING OF BARTH SYNDROME AND LEARN OF 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. | Description |
Activity Other ActivityOther
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 96314 | Expense |
| Description | COSTS RELATING TO AWARENESS AND THE BSF FAMILY SERVICES PROGRAM. | Description |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Of Other Program Service Exp | 96314 | TotalOfOtherProgramServiceExp |
| Total Program Service Expense | 779404 | TotalProgramServiceExpense |
| Described In501 C3 | 1 | DescribedIn501C3 |
| Schedule B Required | 1 | ScheduleBRequired |
| Political Activities | 0 | PoliticalActivities |
| Lobbying Activities | 0 | LobbyingActivities |
| Subject To Proxy Tax | 0 | SubjectToProxyTax |
| Donor Advised Funds | 0 | DonorAdvisedFunds |
| Conservation Easements | 0 | ConservationEasements |
| Collections Of Art | 0 | CollectionsOfArt |
| Credit Counseling | 0 | CreditCounseling |
| Term Or Permanent Endowments | 0 | TermOrPermanentEndowments |
| Report Land Bldg Equip | 0 | ReportLandBldgEquip |
| Report Invest Oth Securities | 0 | ReportInvestOthSecurities |
| Report Prog Rel Invest | 0 | ReportProgRelInvest |
| Report Other Assets | 0 | ReportOtherAssets |
| Report Other Liabilities | 0 | ReportOtherLiabilities |
| Report Fin48 Footnote | 0 | ReportFin48Footnote |
| Independent Audit Financial Stmt | 1 | IndependentAuditFinancialStmt |
| Consolidated Audit Financial Stmt | 0 | ConsolidatedAuditFinancialStmt |
| School | 0 | School |
| Foreign Office | 0 | ForeignOffice |
| Foreign Activities | 0 | ForeignActivities |
| More Than5000 K To Organizations | 0 | MoreThan5000KToOrganizations |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividuals |
| Professional Fundraising | 0 | ProfessionalFundraising |
| Fundraising Activities | 0 | FundraisingActivities |
| Gaming | 0 | Gaming |
| Hospital | 0 | Hospital |
| Grants To Organizations | 1 | GrantsToOrganizations |
| Grants To Individuals | 0 | GrantsToIndividuals |
| Schedule J Required | 1 | ScheduleJRequired |
| Tax Exempt Bonds | 0 | TaxExemptBonds |
| Excess Benefit Transaction | 0 | ExcessBenefitTransaction |
| Prior Excess Benefit Transaction | 0 | PriorExcessBenefitTransaction |
| Loan To Officer Or DQP | 0 | LoanToOfficerOrDQP |
| Grant To Related Person | 0 | GrantToRelatedPerson |
| Bsnss Rltnshp With Organization | 0 | BsnssRltnshpWithOrganization |
| Bsnss Rltnshp Thru Family Member | 0 | BsnssRltnshpThruFamilyMember |
| Officer Entity With Bsnss Rltnshp | 0 | OfficerEntityWithBsnssRltnshp |
| Deductible Non Cash Contributions | 0 | DeductibleNonCashContributions |
| Deductible Contributions Of Art | 0 | DeductibleContributionsOfArt |
| Terminated | 0 | Terminated |
| Partial Liquidation | 0 | PartialLiquidation |
| Disregarded Entity | 0 | DisregardedEntity |
| Related Entity | 0 | RelatedEntity |
| Related Org Controlled Entity | 0 | RelatedOrgControlledEntity |
| Transfers To Exempt Non Chrtbl Org | 0 | TransfersToExemptNonChrtblOrg |
| Activities Conducted Partnership | 0 | ActivitiesConductedPartnership |
| Schedule O Required | 1 | ScheduleORequired |
| Number Forms Transmitted With1096 | 1 | NumberFormsTransmittedWith1096 |
| Number W2 G Included | 0 | NumberW2GIncluded |
| Compliance With Backup Witholding | 1 | ComplianceWithBackupWitholding |
| Number Of Employees | 4 | NumberOfEmployees |
| Employment Tax Returns Filed | 1 | EmploymentTaxReturnsFiled |
| Unrelated Business Income | 0 | UnrelatedBusinessIncome |
| Foreign Financial Account | 0 | ForeignFinancialAccount |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTrans |
| Taxable Party Notification | 0 | TaxablePartyNotification |
| Non Deductible Contributions | 0 | NonDeductibleContributions |
| Quid Pro Quo Contributions | 0 | QuidProQuoContributions |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOf |
| Funds To Pay Premiums | 0 | FundsToPayPremiums |
| Premiums Paid | 0 | PremiumsPaid |
| Indoor Tanning Services | 0 | IndoorTanningServices |
| Info In Schedule O Part VI | X | InfoInScheduleOPartVI |
| Nbr Voting Governing Body Members | 11 | NbrVotingGoverningBodyMembers |
| Number Independent Voting Members | 11 | NumberIndependentVotingMembers |
| Family Or Business Relationship | 1 | FamilyOrBusinessRelationship |
| Delegation Of Management Duties | 0 | DelegationOfManagementDuties |
| Changes To Organizing Docs | 0 | ChangesToOrganizingDocs |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuse |
| Members Or Stockholders | 0 | MembersOrStockholders |
| Election Of Board Members | 0 | ElectionOfBoardMembers |
| Decisions Subject To Approval | 0 | DecisionsSubjectToApproval |
| Minutes Of Governing Body | 1 | MinutesOfGoverningBody |
| Minutes Of Committees | 1 | MinutesOfCommittees |
| Officer Mailing Address | 0 | OfficerMailingAddress |
| Local Chapters | 0 | LocalChapters |
| Form990 Provided To Governing Body | 1 | Form990ProvidedToGoverningBody |
| Conflict Of Interest Policy | 1 | ConflictOfInterestPolicy |
| Annual Disclosure Covered Persons | 1 | AnnualDisclosureCoveredPersons |
| Regular Monitoring Enforcement | 1 | RegularMonitoringEnforcement |
| Whistleblower Policy | 1 | WhistleblowerPolicy |
| Document Retention Policy | 1 | DocumentRetentionPolicy |
| Compensation Process CEO | 1 | CompensationProcessCEO |
| Compensation Process Other | 1 | CompensationProcessOther |
| Investment In Joint Venture | 0 | InvestmentInJointVenture |
| States Where Copy Of Return Is Filed | MA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NY | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CT | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NJ | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | IL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | TN | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | PA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | VA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | FL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MD | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | UT | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | GA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | KS | StatesWhereCopyOfReturnIsFiled |
| Own Website | X | OwnWebsite |
| Other Website | X | OtherWebsite |
| Upon Request | X | UponRequest |
The Books Are In Care Of TheBooksAreInCareOf
Name Business NameBusiness
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | ELLEN BRUNO | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Telephone Number | 5086689392 | TelephoneNumber |
Address US AddressUS
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 92 MILL BROOK AVENUE | AddressLine1 |
| City | WALPPOLE | City |
| State | MA | State |
| ZIP Code | 020812163 | ZIPCode |
Form990 Part VII Section A Form990PartVIISectionA (14 entries)
| TitleTitle | Average Hours Per WeekAverageHoursPerWeek | Individual Trustee Or DirectorIndividualTrusteeOrDirector | Reportable Comp From OrganizationReportableCompFromOrganization | Reportable Comp From Related OrgsReportableCompFromRelatedOrgs | Other CompensationOtherCompensation | OfficerOfficer | Highest Compensated EmployeeHighestCompensatedEmployee | FormerFormer |
|---|---|---|---|---|---|---|---|---|
| MICHAELA DAMIN | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| STEPHEN KUGELMANN | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| KATHERINE MCCURDY | ||||||||
| BOARD MEMBER | 10.00 | X | 0 | 0 | 0 | |||
| SUSAN OSNOS | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| SUSAN WILKINS | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| STEPHEN B MCCURDY | ||||||||
| CHAIRMAN | 15.00 | X | 0 | 0 | 0 | X | ||
| RANDY BUDDEMEYER | ||||||||
| TREASURER | 5.00 | X | 0 | 0 | 0 | X | ||
| MARCUS SERNEL | ||||||||
| VICE-CHAIRMAN | 5.00 | X | 0 | 0 | 0 | X | ||
| SUSAN A MCCORMACK | ||||||||
| SECRETARY | 2.00 | X | 0 | 0 | 0 | X | ||
| JOHN WILKINS | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| DAVID AXELROD MD | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| LINDSAY B GROFF | ||||||||
| EXECUTIVE DIRECTOR | 40.00 | 100000 | 0 | 0 | X | |||
| MATTHEW TOTH | ||||||||
| DIR OF SCIENCE | 40.00 | 135370 | 0 | 6608 | X | |||
| VALERIE BOWEN | ||||||||
| PRESIDENT, FORMER | 40.00 | 67516 | 0 | 12100 | X | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | 302886 | TotalReportableCompFromOrg |
| Total Reportable Comp Frm Rltd Orgs | 0 | TotalReportableCompFrmRltdOrgs |
| Total Other Compensation | 18708 | TotalOtherCompensation |
| Number Individuals GT100 K | 1 | NumberIndividualsGT100K |
| Formers Listed | 1 | FormersListed |
| Total Comp GT150 K | 0 | TotalCompGT150K |
| Compensation From Other Sources | 0 | CompensationFromOtherSources |
| Number Of Contractors GT100 K | 0 | NumberOfContractorsGT100K |
| Government Grants | 13000 | GovernmentGrants |
| All Other Contributions | 858480 | AllOtherContributions |
| Total Contributions | 871480 | TotalContributions |
Investment Income InvestmentIncome
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 7975 | TotalRevenueColumn |
| Exclusion | $7,975 | ExclusionAmount |
Total Revenue TotalRevenue
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 879455 | TotalRevenueColumn |
| Related Or Exempt Function Income | 0 | RelatedOrExemptFunctionIncome |
| Unrelated Business Revenue | 0 | UnrelatedBusinessRevenue |
| Exclusion | $7,975 | ExclusionAmount |
Grants To Domestic Orgs GrantsToDomesticOrgs
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 315823 | Total |
| Program Services | 315823 | ProgramServices |
Comp Current Officers Directors CompCurrentOfficersDirectors
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 304802 | Total |
| Program Services | 234417 | ProgramServices |
| Management And General | 35193 | ManagementAndGeneral |
| Fundraising | 35192 | Fundraising |
Other Salaries And Wages OtherSalariesAndWages
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 56688 | Total |
| Program Services | 28344 | ProgramServices |
| Management And General | 28344 | ManagementAndGeneral |
Other Employee Benefits OtherEmployeeBenefits
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 24756 | Total |
| Program Services | 21732 | ProgramServices |
| Management And General | 3024 | ManagementAndGeneral |
Payroll Taxes PayrollTaxes
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 26038 | Total |
| Program Services | 18400 | ProgramServices |
| Management And General | 4836 | ManagementAndGeneral |
| Fundraising | 2802 | Fundraising |
Fees For Services Accounting FeesForServicesAccounting
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 35591 | Total |
| Management And General | 35591 | ManagementAndGeneral |
Fees For Services Other FeesForServicesOther
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 9375 | Total |
| Program Services | 5900 | ProgramServices |
| Management And General | 3475 | ManagementAndGeneral |
Office Expenses OfficeExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 25670 | Total |
| Program Services | 12162 | ProgramServices |
| Management And General | 13249 | ManagementAndGeneral |
| Fundraising | 259 | Fundraising |
Insurance Insurance
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 3722 | Total |
| Management And General | 3722 | ManagementAndGeneral |
Other Expenses OtherExpenses (4 entries)
| DescriptionDescription | TotalTotal | Program ServicesProgramServices | Management And GeneralManagementAndGeneral | FundraisingFundraising |
|---|---|---|---|---|
| MEALS | 57659 | 57659 | ||
| TRANSPORTATION | 48094 | 44061 | 3765 | 268 |
| PRINTING AND PUBLICATIO | 12760 | 12677 | 83 | |
| AUDIO VISUAL | 10689 | 10689 |
All Other Expenses AllOtherExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 24642 | Total |
| Program Services | 17540 | ProgramServices |
| Management And General | 6102 | ManagementAndGeneral |
| Fundraising | 1000 | Fundraising |
Total Functional Expenses TotalFunctionalExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 956309 | Total |
| Program Services | 779404 | ProgramServices |
| Management And General | 137384 | ManagementAndGeneral |
| Fundraising | 39521 | Fundraising |
Savings And Temp Cash Investments SavingsAndTempCashInvestments
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1829014 | BOY |
| EOY | 1869007 | EOY |
Accounts Receivable AccountsReceivable
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 163351 | BOY |
| EOY | 37186 | EOY |
Prepaid Expenses Deferred Charges PrepaidExpensesDeferredCharges
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 2148 | BOY |
| EOY | 3592 | EOY |
Total Assets TotalAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1994513 | BOY |
| EOY | 1909785 | EOY |
Accounts Payable Accrued Expenses AccountsPayableAccruedExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 19302 | BOY |
| EOY | 29938 | EOY |
Grants Payable GrantsPayable
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 80000 | BOY |
| EOY | 60500 | EOY |
Total Liabilities TotalLiabilities
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 99302 | BOY |
| EOY | 90438 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Follow SFAS117 | X | FollowSFAS117 |
Unrestricted Net Assets UnrestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 937779 | BOY |
| EOY | 849083 | EOY |
Temporarily Restricted Net Assets TemporarilyRestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 957432 | BOY |
| EOY | 970264 | EOY |
Total Net Assets Fund Balances TotalNetAssetsFundBalances
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1895211 | BOY |
| EOY | 1819347 | EOY |
Total Liab Net Assets Fund Balances TotalLiabNetAssetsFundBalances
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1994513 | BOY |
| EOY | 1909785 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expenses | -76854 | ReconcilationRevenueExpenses |
| Reconciliation Unrealized Invest | 990 | ReconciliationUnrealizedInvest |
| Reconcilation Other Changes | 0 | ReconcilationOtherChanges |
| Info In Schedule O Part XII | X | InfoInScheduleOPartXII |
| Method Of Accounting Accrual | X | MethodOfAccountingAccrual |
| Accountant Compile Or Review | 0 | AccountantCompileOrReview |
| FS Audited | 1 | FSAudited |
FS Audited Basis FSAuditedBasis
| Field | Value | IRS element (for citing) |
|---|---|---|
| Financial Statement Separate | X | FinancialStatementSeparate |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | 1 | AuditCommittee |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequired |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Publicly Supported Org170b1 Avi | X | PubliclySupportedOrg170b1Avi |
Gifts Grants Contrib Received170 GiftsGrantsContribReceived170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 727957 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 694771 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 769756 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 706090 | CurrentTaxYearMinus1Year |
| Current Tax Year | 871480 | CurrentTaxYear |
| Total | 3770054 | Total |
Total170 Total170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 727957 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 694771 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 769756 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 706090 | CurrentTaxYearMinus1Year |
| Current Tax Year | 871480 | CurrentTaxYear |
| Total | 3770054 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Amounts Subst Contributors Total | 1429430 | AmountsSubstContributorsTotal |
| Public Support Total170 | 2340624 | PublicSupportTotal170 |
Gross Investment Income170 GrossInvestmentIncome170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 113788 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 59232 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 26121 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 11094 | CurrentTaxYearMinus1Year |
| Current Tax Year | 7975 | CurrentTaxYear |
| Total | 218210 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | 3988264 | TotalSupport |
| Public Support Pertcentage170 | 0.58690 | PublicSupportPertcentage170 |
| Public Support Pertcent Prior Year | 0.61230 | PublicSupportPertcentPriorYear |
| Thirty Three Percnt Tests CY170 | X | ThirtyThreePercntTestsCY170 |
Schedule B IRS990ScheduleB
Contributor Info ContributorInfo
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor Number | RESTRICTED | ContributorNumber |
Contributor Name Business ContributorNameBusiness
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor Address US ContributorAddressUS
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Aggregate Contributions | RESTRICTED | AggregateContributions |
Schedule D IRS990ScheduleD
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Of Book Value Land Buildings | 0 | TotalOfBookValueLandBuildings |
| Tot Revenue Etc Audited Fincl Stmt | 880445 | TotRevenueEtcAuditedFinclStmt |
| Net Unrealized Gains Investments | 990 | NetUnrealizedGainsInvestments |
| Revenue Not Rptd F990 | 990 | RevenueNotRptdF990 |
| Revenue Subtotal | 879455 | RevenueSubtotal |
| Revenue Not Rptd On Fin Stmt | 0 | RevenueNotRptdOnFinStmt |
| Total Revenue Per Form990 | 879455 | TotalRevenuePerForm990 |
| Tot Expenses Etc Audited Fincl Stmt | 956309 | TotExpensesEtcAuditedFinclStmt |
| Expenses Not Rptd F990 | 0 | ExpensesNotRptdF990 |
| Expenses Subtotal | 956309 | ExpensesSubtotal |
| Expenses Not Rptd On Fin Stmt | 0 | ExpensesNotRptdOnFinStmt |
| Total Expenses Per Form990 | 956309 | TotalExpensesPerForm990 |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Records Maintained | 1 | RecordsMaintained |
Recipient Table RecipientTable (8 entries)
| Address Line1AddressUS/AddressLine1 | CityAddressUS/City | StateAddressUS/State | ZIP CodeAddressUS/ZIPCode | IRC SectionIRCSection | Amount Of Cash GrantAmountOfCashGrant | Purpose Of GrantPurposeOfGrant | EIN Of RecipientEINOfRecipient |
|---|---|---|---|---|---|---|---|
| NY UNIVERISTY SCHOOL OF MEDICINE | |||||||
| 550 FIRST AVENUE | NEW YORK | NY | 10016 | N/A | 40000 | RESEARCH | |
| WAYNE STATE UNIVERSITY | |||||||
| 5047 GULLEN MALL | DETROIT | MI | 48202 | 501(C)(3) | 40000 | RESEARCH | 386028429 |
| CASE WESTERN RESERVE UNIVERSITY | |||||||
| 10900 EUCLID AVENUE | CLEVELAND | OH | 44106 | 501(C)(3) | 40000 | RESEARCH | 341018992 |
| CHILDREN'S HOSPITAL OF BOSTON | |||||||
| 300 LONGWOOD AVENUE | BOSTON | MA | 02115 | 501(C)(3) | 40000 | RESEARCH | 042774441 |
| THE JOHN HOPKINS UNIVERISTY | |||||||
| 3400 NORTH CHARLES STREET | BALTIMORE | MD | 21211 | 501(C)(3) | 40000 | RESEARCH | 522090682 |
| UNIVERSITY OF WASHINGTON | |||||||
| 700 ROSEDALE AVE BOX 1034 | ST LOUIS | MO | 631121408 | N/A | 44179 | RESEARCH | 430653611 |
| KENNEDY KRIEGER INSTITUTE | |||||||
| 707 NORTH BROADWAY | BALTIMORE | MD | 21205 | 501(C)(3) | 36065 | RESEARCH | 521524965 |
| UNIVERSITY OF CALIFORNIA AT SAN DIEGO | |||||||
| 9500 GILMAN DRIVE | LA JOLLA | CA | 92093 | 40000 | RESEARCH | 956006144 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Nbr Of501 C3 And Govt Grants | 5 | TotalNbrOf501C3AndGovtGrants |
| Total Nbr Of Other Organizations | 3 | TotalNbrOfOtherOrganizations |
Form990 Schedule I Part IV Form990ScheduleIPartIV
| Field | Value | IRS element (for citing) |
|---|---|---|
| Identifier | PROCEDURE FOR MONITORING GRANTS IN THE U.S.: | Identifier |
| Return Reference | PART I, LINE 2: | ReturnReference |
| Explanation | SCHEDULE I, PART I, LINE 2: PRIOR 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. | Explanation |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | X | CompensationCommittee |
| Form990 Of Other Organizations | X | Form990OfOtherOrganizations |
| Written Employment Contract | X | WrittenEmploymentContract |
| Compensation Survey | X | CompensationSurvey |
| Board Or Committee Approval | X | BoardOrCommitteeApproval |
| Severance Payment | 0 | SeverancePayment |
| Supplemental Nonqual Retire Plan | 0 | SupplementalNonqualRetirePlan |
| Equity Based Comp Arrangement | 0 | EquityBasedCompArrangement |
| Comp Based On Revenue Of Filing Org | 0 | CompBasedOnRevenueOfFilingOrg |
| Comp Based On Revenue Related Orgs | 0 | CompBasedOnRevenueRelatedOrgs |
| Comp Based Net Earnings Filing Org | 0 | CompBasedNetEarningsFilingOrg |
| Comp Based Net Earnings Relate Orgs | 0 | CompBasedNetEarningsRelateOrgs |
| Any Non Fixed Payments | 0 | AnyNonFixedPayments |
| Initial Contract Exception | 0 | InitialContractException |
Form990 Schedule J Part II Form990ScheduleJPartII
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Person | VALERIE BOWEN | NamePerson |
| Title | PRESIDENT, FORMER | Title |
| Base Compensation Filing Org | 67516 | BaseCompensationFilingOrg |
| Comp Based On Related Orgs | 0 | CompBasedOnRelatedOrgs |
| Bonus Filing Org | 0 | BonusFilingOrg |
| Bonus Related Orgs | 0 | BonusRelatedOrgs |
| Other Compensation Filing Org | 0 | OtherCompensationFilingOrg |
| Other Compensation Related Orgs | 0 | OtherCompensationRelatedOrgs |
| Deferred Comp Filing Org | 0 | DeferredCompFilingOrg |
| Deferred Comp Related Orgs | 0 | DeferredCompRelatedOrgs |
| Nontaxable Benefits Filing Org | 12100 | NontaxableBenefitsFilingOrg |
| Nontaxable Benefits Related Orgs | 0 | NontaxableBenefitsRelatedOrgs |
| Total Compensation Filing Org | 79616 | TotalCompensationFilingOrg |
| Total Compensation Related Orgs | 0 | TotalCompensationRelatedOrgs |
| Comp Report Prior990 Filing Org | 0 | CompReportPrior990FilingOrg |
| Comp Report Prior990 Related Orgs | 0 | CompReportPrior990RelatedOrgs |
Schedule O IRS990ScheduleO
General Explanation GeneralExplanation (6 entries)
| Return ReferenceReturnReference | ExplanationExplanation |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 2 | STEPHEN AND KATHERINE MCCURDY ARE HUSBAND AND WIFE. IN ADDITION JOHN AND SUSAN WILKINS ARE MOTHER AND SON. |
| FORM 990, PART VI, SECTION B, LINE 11 | THE 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 12C | EACH 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 15 | EACH 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 19 | THE 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. |
| 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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