BARTH SYNDROME FOUNDATION INC: Form 990, tax year 2013
View the entire original 990 at ProPublica ↗
- Organization
- BARTH SYNDROME FOUNDATION INC (EIN 22-3755704)
- Tax period
- 2013-01-01 to 2013-12-31
- Filed
- 2014-05-08
- IRS object ID
- 201441289349301349
- Schema version
- 2013v3.0
- 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
- Form 990
- Schedule A
- Schedule B
- Schedule D
- Schedule F
- Schedule I
- Schedule J
- Schedule M
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2014-05-08T13:20:03-05:00 | ReturnTs |
| Tax Period End | 2013-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 042088368 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | GRAY GRAY & GRAY LLP | BusinessNameLine1 |
Preparer US Address PreparerUSAddress
| 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 | ReturnTypeCd |
| Tax Period Begin | 2013-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 223755704 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | THE BARTH SYNDROME FOUNDATION INC | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | BART | BusinessNameControlTxt |
| Phone | 9148341771 | PhoneNum |
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 |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | LINDSAY B GROFF | PersonNm |
| Person Title | EXECUTIVE DIRECTOR | PersonTitleTxt |
| Phone | 9148341771 | PhoneNum |
| Signature | 2014-04-14 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | MICHAEL L CECERE | PreparerPersonNm |
| PTIN | P00236848 | PTIN |
| Phone | 7814070300 | PhoneNum |
| Preparation | 2014-04-14 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2013 | TaxYr |
| Build TS | 2015-11-30 17:44:51Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | LINDSAY B GROFF | PrincipalOfficerNm |
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 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $1,069,130 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.BARTHSYNDROME.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2000 | FormationYr |
| Legal Domicile State | DE | LegalDomicileStateCd |
| Activity Or Mission | 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. | ActivityOrMissionDesc |
| Voting Members Governing Body | 10 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 10 | VotingMembersIndependentCnt |
| Total Employee | 4 | TotalEmployeeCnt |
| Total Volunteers | 20 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $871,480 | PYContributionsGrantsAmt |
| CY Contributions Grants | $824,480 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $7,975 | PYInvestmentIncomeAmt |
| CY Investment Income | $175 | CYInvestmentIncomeAmt |
| PY Other Revenue | $0 | PYOtherRevenueAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $879,455 | PYTotalRevenueAmt |
| CY Total Revenue | $824,655 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $315,823 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $297,772 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $412,284 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $436,820 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $50,241 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $228,202 | PYOtherExpensesAmt |
| CY Other Expenses | $62,360 | CYOtherExpensesAmt |
| PY Total Expenses | $956,309 | PYTotalExpensesAmt |
| CY Total Expenses | $796,952 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$76,854 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $27,703 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $1,909,785 | TotalAssetsBOYAmt |
| Total Assets EOY | $1,908,550 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $90,438 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $62,293 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $1,819,347 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $1,846,257 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | 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. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $437,806 | ExpenseAmt |
| Grant | $297,772 | GrantAmt |
| Desc | THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2013 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $92,342 | ExpenseAmt |
| Desc | 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. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $103,482 | ExpenseAmt |
| Desc | FAMILY 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $30,592 | ExpenseAmt |
| Desc | COSTS RELATING TO AWARENESS. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $30,592 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $664,222 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | 0 | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Temp Or Permanent Endowments | 0 | TempOrPermanentEndowmentsInd |
| Report Land Building Equipment | 0 | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | 0 | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With Officer Ent | 0 | BusinessRlnWithOfficerEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 1 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 4 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | 0 | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 10 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 10 | IndependentVotingMemberCnt |
| Family Or Business Rln | Yes (1) | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | ELLEN BRUNO | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 5086689392 | PhoneNum |
US Address USAddress
| 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 Form990PartVIISectionAGrp (13 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | OfficerOfficerInd | Highest Compensated EmployeeHighestCompensatedEmployeeInd | Former Ofcr Director TrusteeFormerOfcrDirectorTrusteeInd |
|---|---|---|---|---|---|---|---|---|
| STEPHEN KUGELMANN | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| KATHERINE MCCURDY | ||||||||
| BOARD MEMBER | 10.00 | Yes (X) | $0 | $0 | $0 | |||
| SUSAN OSNOS | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| SUSAN WILKINS | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| RANDY BUDDEMEYER | ||||||||
| TREASURER | 5.00 | Yes (X) | $0 | $0 | $0 | Yes (X) | ||
| MARCUS SERNEL | ||||||||
| CHAIRMAN | 10.00 | Yes (X) | $0 | $0 | $0 | Yes (X) | ||
| SUSAN A MCCORMACK | ||||||||
| SECRETARY | 2.00 | Yes (X) | $0 | $0 | $0 | Yes (X) | ||
| JOHN WILKINS | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| DAVID AXELROD MD | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| CATHY RITTER | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| LINDSAY B GROFF | ||||||||
| EXECUTIVE DIRECTOR | 40.00 | $110,308 | $0 | $0 | Yes (X) | |||
| MATTHEW TOTH | ||||||||
| DIR OF SCIENCE | 40.00 | $143,781 | $0 | $7,209 | Yes (X) | |||
| VALERIE BOWEN | ||||||||
| PRESIDENT, FORMER | 40.00 | $72,526 | $0 | $7,266 | Yes (X) | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $326,615 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $14,475 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 2 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | Yes (1) | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| All Other Contributions | $824,480 | AllOtherContributionsAmt |
| Noncash Contributions | $246,765 | NoncashContributionsAmt |
| Total Contributions | $824,480 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $5,481 | TotalRevenueColumnAmt |
| Exclusion | $5,481 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $239,169 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $244,475 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | -$5,306 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$5,306 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | -$5,306 | RelatedOrExemptFuncIncomeAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $824,655 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | -$5,306 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $5,481 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $288,284 | TotalAmt |
| Program Services | $288,284 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,488 | TotalAmt |
| Program Services | $9,488 | ProgramServicesAmt |
Comp Disqual Persons CompDisqualPersonsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $182,846 | TotalAmt |
| Program Services | $139,542 | ProgramServicesAmt |
| Management And General | $4,692 | ManagementAndGeneralAmt |
| Fundraising | $38,612 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $205,246 | TotalAmt |
| Program Services | $190,270 | ProgramServicesAmt |
| Management And General | $14,976 | ManagementAndGeneralAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $21,126 | TotalAmt |
| Program Services | $19,463 | ProgramServicesAmt |
| Management And General | $1,663 | ManagementAndGeneralAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $27,602 | TotalAmt |
| Program Services | $23,056 | ProgramServicesAmt |
| Management And General | $1,462 | ManagementAndGeneralAmt |
| Fundraising | $3,084 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $28,894 | TotalAmt |
| Management And General | $28,894 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | -$46,368 | TotalAmt |
| Program Services | -$46,368 | ProgramServicesAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,552 | TotalAmt |
| Program Services | $8,626 | ProgramServicesAmt |
| Management And General | $11,737 | ManagementAndGeneralAmt |
| Fundraising | $2,189 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,827 | TotalAmt |
| Management And General | $3,827 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| TRANSPORTATION | $16,385 | $6,334 | $9,753 | $298 |
| TRAINING AND EDUCATION | $10,913 | $6,155 | $4,758 | |
| DUES & FEES | $10,771 | $4,984 | $4,787 | $1,000 |
| TELEPHONE | $8,252 | $7,277 | $675 | $300 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,134 | TotalAmt |
| Program Services | $7,111 | ProgramServicesAmt |
| Management And General | $23 | ManagementAndGeneralAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $796,952 | TotalAmt |
| Program Services | $664,222 | ProgramServicesAmt |
| Management And General | $82,489 | ManagementAndGeneralAmt |
| Fundraising | $50,241 | FundraisingAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,869,007 | BOYAmt |
| EOY | $1,874,604 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $37,186 | BOYAmt |
| EOY | $21,828 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,592 | BOYAmt |
| EOY | $12,118 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,909,785 | BOYAmt |
| EOY | $1,908,550 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $29,938 | BOYAmt |
| EOY | $23,478 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $60,500 | BOYAmt |
| EOY | $38,815 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $90,438 | BOYAmt |
| EOY | $62,293 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $849,083 | BOYAmt |
| EOY | $911,867 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $970,264 | BOYAmt |
| EOY | $934,390 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,819,347 | BOYAmt |
| EOY | $1,846,257 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,909,785 | BOYAmt |
| EOY | $1,908,550 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $27,703 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | -$793 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $694,771 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $769,756 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $706,090 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $871,480 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $824,480 | CurrentTaxYearAmt |
| Total | $3,866,577 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $694,771 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $769,756 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $706,090 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $871,480 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $824,480 | CurrentTaxYearAmt |
| Total | $3,866,577 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $1,545,026 | SubstantialContributorsTotAmt |
| Public Support Total170 | $2,321,551 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $59,232 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $26,121 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $11,094 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $7,975 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $175 | CurrentTaxYearAmt |
| Total | $104,597 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $3,971,174 | TotalSupportAmt |
| Public Support CY170 | 0.58460 | PublicSupportCY170Pct |
| Public Support PY170 | 0.58690 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| 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) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule D IRS990ScheduleD
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $0 | TotalBookValueLandBuildingsAmt |
| Total Rev Etc Audited Fincl Stmt | $823,862 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | -$793 | NetUnrealizedGainsInvstAmt |
| Revenue Not Reported | -$793 | RevenueNotReportedAmt |
| Revenue Subtotal | $824,655 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $824,655 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $796,952 | TotExpnsEtcAuditedFinclStmtAmt |
| Expenses Not Reported | $0 | ExpensesNotReportedAmt |
| Expenses Subtotal | $796,952 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $796,952 | TotalExpensesPerForm990Amt |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | 0 | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | NORTH AMERICA | RegionTxt |
| Offices | 0 | OfficesCnt |
| Employee | 0 | EmployeeCnt |
| Type Of Activities Conducted | RESEARCH GRANT AWARDED | TypeOfActivitiesConductedTxt |
| Region Total Expenditures | $18,975 | RegionTotalExpendituresAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continutation Total Office | 0 | ContinutationTotalOfficeCnt |
| Continutation Total Employee | 0 | ContinutationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $18,975 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $18,975 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | NORTH AMERICA | RegionTxt |
| Purpose Of Grant | RELATIONSHIP BETWEEN MEMBRANE PHYSICAL PROPERTIES AND THE ACTION OF TAFAZZIN. | PurposeOfGrantTxt |
| Cash Grant | $9,488 | CashGrantAmt |
| Manner Of Cash Disbursement | CHECK | MannerOfCashDisbursementTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 1 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | 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. | ExplanationTxt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (10 entries)
| Address Line1USAddress/AddressLine1 | CityUSAddress/City | StateUSAddress/State | ZIP CodeUSAddress/ZIPCode | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt | Recipient EINRecipientEIN |
|---|---|---|---|---|---|---|---|
| NY UNIVERSITY MEDICAL CENTER | |||||||
| 550 FIRST AVENUE | NEW YORK | NY | 10016 | N/A | $40,000 | RESEARCH | |
| UNIVERISTY OF IOWA | |||||||
| 2222 OLD HIGHWAY 218 S | IOWA CITY | IA | 52242 | N/A | $40,000 | RESEARCH | |
| CHILDREN'S HOSPITAL AND RESEARH CENTER AT OAKLAND | |||||||
| 747 52ND STREET | OAKLAND | CA | 94609 | 501(C)(3) | $40,000 | RESEARCH | 940382330 |
| BOSTON CHILDREN'S HOSPITAL | |||||||
| 300 LONGWOOD AVENUE | BOSTON | MA | 02115 | 501(C)(3) | $40,000 | RESEARCH | 042774441 |
| UNIVERISTY OF WASHINGTON | |||||||
| 4311 11TH AVE NE STE 100 | SEATTLE | WA | 98105 | $40,000 | RESEARCH | 916001537 | |
| UNIVERSITY OF WASHINGTON | |||||||
| 700 ROSEDALE AVE BOX 1034 | ST LOUIS | MO | 631121408 | N/A | RESEARCH | 430653611 | |
| KENNEDY KRIEGER INSTITUTE | |||||||
| 707 NORTH BROADWAY | BALTIMORE | MD | 21205 | 501(C)(3) | RESEARCH | 521524965 | |
| UNIVERSITY OF CALIFORNIA AT SAN DIEGO | |||||||
| 9500 GILMAN DRIVE | LA JOLLA | CA | 92093 | RESEARCH | 956006144 | ||
| PENNSYLVANIA STATE UNIVERSITY SCHOOL OF MEDICINE | |||||||
| 500 UNIVERSITY DRIVE | HERSHEY | PA | 17033 | 501(C)(3) | $40,000 | RESEARCH | 251854772 |
| COLORADO STATE UNIVERSITY | |||||||
| 1062 CAMPUS DELIVERY | FORT COLLINS | CO | 805231062 | N/A | $40,000 | RESEARCH | |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | 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. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Form990 Of Other Organizations | Yes (X) | Form990OfOtherOrganizationsInd |
| Written Employment Contract | Yes (X) | WrittenEmploymentContractInd |
| Compensation Survey | Yes (X) | CompensationSurveyInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (2 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| MATTHEW TOTH | ||||||||||||||
| DIR OF SCIENCE | $143,781 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $7,209 | $0 | $150,990 | $0 | $0 | $0 |
| VALERIE BOWEN | ||||||||||||||
| PRESIDENT, FORMER | $72,526 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $7,266 | $0 | $79,792 | $0 | $0 | $0 |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 9 | ContributionCnt |
| Noncash Contributions Rpt F990 | $246,765 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | COST ON DAY OF DONATION | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form8283 Received | 1 | Form8283ReceivedCnt |
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | 0 | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 2 | 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. |
| 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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