PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES INC: Form 990, tax year 2020
View the entire original 990 at ProPublica ↗
- Organization
- PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES INC (EIN 58-1966822)
- Tax period
- 2020-10-01 to 2021-09-30
- Filed
- 2022-06-02
- IRS object ID
- 202221539349300312
- Schema version
- 2020v4.2
- 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 C
- Schedule D
- Schedule I
- Schedule J
- Schedule M
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2022-06-02T08:25:43-05:00 | ReturnTs |
| Tax Period End | 2021-09-30 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 440160260 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FORVIS LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 500 RIDGEFIELD COURT | AddressLine1Txt |
| City | ASHEVILLE | CityNm |
| State Abbreviation | NC | StateAbbreviationCd |
| ZIP | 28806 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2020-10-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 581966822 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | PEDIATRIC BRAIN TUMOR FOUNDATION | BusinessNameLine1Txt |
| Business Name Line2 | OF THE UNITED STATES INC | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | PEDI | BusinessNameControlTxt |
| Phone | 8286656891 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 6065 ROSWELL ROAD NE STE 505 | AddressLine1Txt |
| City | ATLANTA | CityNm |
| State Abbreviation | GA | StateAbbreviationCd |
| ZIP | 30328 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | ANNE SUTTON | PersonNm |
| Person Title | SECRETARY | PersonTitleTxt |
| Phone | 8286656891 | PhoneNum |
| Signature | 2022-06-02 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Signing Officer SigningOfficerGrp
Person Full Name PersonFullName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person First | ANNE | PersonFirstNm |
| Person Last | SUTTON | PersonLastNm |
| Field | Value | IRS element (for citing) |
|---|---|---|
| SSN | 999009999 | SSN |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | AMY BIBBY | PreparerPersonNm |
| PTIN | P00445891 | PTIN |
| Phone | 8282542254 | PhoneNum |
| Preparation | 2022-06-02 | PreparationDt |
Additional Filer Information AdditionalFilerInformation
Trusted Customer TrustedCustomerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Trusted Customer | 3 | TrustedCustomerCd |
| Authentication Assurance Level | AAL1 | AuthenticationAssuranceLevelCd |
| Identity Assurance Level | IAL1 | IdentityAssuranceLevelCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2020 | TaxYr |
| Build TS | 2022-09-23 18:48:47Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | COURTNEY DAVIES | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 6065 ROSWELL ROAD NE STE 505 | AddressLine1Txt |
| City | ATLANTA | CityNm |
| State Abbreviation | GA | StateAbbreviationCd |
| ZIP | 30328 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $6,017,204 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.CURETHEKIDS.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1992 | FormationYr |
| Legal Domicile State | GA | LegalDomicileStateCd |
| Activity Or Mission | ELIMINATE CHILDHOOD BRAIN TUMORS AND SUPPORT FAMILIES LIVING WITH THIS DEVASTATING DISEASE. | ActivityOrMissionDesc |
| Voting Members Governing Body | 12 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 12 | VotingMembersIndependentCnt |
| Total Employee | 38 | TotalEmployeeCnt |
| Total Volunteers | 350 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $3,836,629 | PYContributionsGrantsAmt |
| CY Contributions Grants | $6,015,457 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $14,534 | PYInvestmentIncomeAmt |
| CY Investment Income | -$15,461 | CYInvestmentIncomeAmt |
| PY Other Revenue | $0 | PYOtherRevenueAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $3,851,163 | PYTotalRevenueAmt |
| CY Total Revenue | $5,999,996 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $1,992,418 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $2,128,614 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $1,865,638 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $1,907,400 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $717,603 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $769,584 | PYOtherExpensesAmt |
| CY Other Expenses | $1,231,795 | CYOtherExpensesAmt |
| PY Total Expenses | $4,627,640 | PYTotalExpensesAmt |
| CY Total Expenses | $5,267,809 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$776,477 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $732,187 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $5,248,201 | TotalAssetsBOYAmt |
| Total Assets EOY | $6,277,731 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $549,498 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $846,841 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $4,698,703 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $5,430,890 | NetAssetsOrFundBalancesEOYAmt |
| Mission | VISION: A WORLD WITHOUT CHILDHOOD BRAIN TUMORS.MISSION: CARE. CURE. THRIVE. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $3,966,715 | ExpenseAmt |
| Grant | $2,128,614 | GrantAmt |
| Revenue | $5,999,996 | RevenueAmt |
| Desc | SEE SCHEDULE O | Desc |
| Total Program Service Expenses | $3,966,715 | 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 |
| Donor Rstr Or Quasi Endowments | Yes (1) | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | 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 | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | 0 | ForeignActivitiesInd |
| More Than5000 K To Org | 0 | 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 | Yes (1) | 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 With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| 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 | 25 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 38 | 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 | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 12 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 12 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | 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 | Yes (1) | LocalChaptersInd |
| Policies Reference Chapters | Yes (1) | PoliciesReferenceChaptersInd |
| 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 | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AZ | 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 | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | LA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ME | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ND | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | HI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MO | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | GEOFF STILL | PersonNm |
| Phone | 8284180814 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 6065 ROSWELL ROAD NE STE 505 | AddressLine1Txt |
| City | ATLANTA | CityNm |
| State Abbreviation | GA | StateAbbreviationCd |
| ZIP | 30328 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (15 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|
| ANDREW AJ JANOWER | ||||||
| CHAIR | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| KRISTIN YOUNG | ||||||
| VICE CHAIR | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| ANNE SUTTON | ||||||
| SECRETARY | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| JEFF GELFAND | ||||||
| TREASURER | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| DOUG PORTER | ||||||
| CHAIRMAN EMERITUS | 1.00 | Yes (X) | $0 | $0 | $0 | |
| CHUCK BODERMAN | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| CHASE JONES | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| LARRY LITTLE | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| KARL MUELLER | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| KEN MURPHY | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| JOHN RAGNONI | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| SUSIE ROSSICK | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| JILL SCOGNAMIGLIO | ||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | |
| COURTNEY DAVIES | ||||||
| PRESIDENT/CEO | 50.00 | Yes (X) | $275,380 | $0 | $0 | |
| GEOFF STILL | ||||||
| CFO | 50.00 | Yes (X) | $132,887 | $0 | $13,892 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $408,267 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $13,892 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 2 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | 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 | $6,015,457 | AllOtherContributionsAmt |
| Noncash Contributions | $113,725 | NoncashContributionsAmt |
| Total Contributions | $6,015,457 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,747 | TotalRevenueColumnAmt |
| Exclusion | $1,747 | ExclusionAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other | $17,208 | OtherAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other | -$17,208 | OtherAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$17,208 | TotalRevenueColumnAmt |
| Exclusion | -$17,208 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $5,999,996 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$15,461 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,668,820 | TotalAmt |
| Program Services | $1,668,820 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $459,794 | TotalAmt |
| Program Services | $459,794 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $422,159 | TotalAmt |
| Program Services | $223,940 | ProgramServicesAmt |
| Management And General | $143,143 | ManagementAndGeneralAmt |
| Fundraising | $55,076 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,159,437 | TotalAmt |
| Program Services | $790,259 | ProgramServicesAmt |
| Management And General | $152,860 | ManagementAndGeneralAmt |
| Fundraising | $216,318 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $39,738 | TotalAmt |
| Program Services | $26,168 | ProgramServicesAmt |
| Management And General | $8,335 | ManagementAndGeneralAmt |
| Fundraising | $5,235 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $199,070 | TotalAmt |
| Program Services | $105,213 | ProgramServicesAmt |
| Management And General | $47,719 | ManagementAndGeneralAmt |
| Fundraising | $46,138 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $86,996 | TotalAmt |
| Program Services | $57,911 | ProgramServicesAmt |
| Management And General | $16,422 | ManagementAndGeneralAmt |
| Fundraising | $12,663 | FundraisingAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $417,677 | TotalAmt |
| Program Services | $219,044 | ProgramServicesAmt |
| Management And General | $91,132 | ManagementAndGeneralAmt |
| Fundraising | $107,501 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $43,678 | TotalAmt |
| Program Services | $38,142 | ProgramServicesAmt |
| Fundraising | $5,536 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $114,268 | TotalAmt |
| Program Services | $63,243 | ProgramServicesAmt |
| Management And General | $13,276 | ManagementAndGeneralAmt |
| Fundraising | $37,749 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $15,410 | TotalAmt |
| Program Services | $13,037 | ProgramServicesAmt |
| Management And General | $2,373 | ManagementAndGeneralAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $224,945 | TotalAmt |
| Program Services | $184,068 | ProgramServicesAmt |
| Management And General | $36,411 | ManagementAndGeneralAmt |
| Fundraising | $4,466 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,698 | TotalAmt |
| Program Services | $6,014 | ProgramServicesAmt |
| Management And General | $1,684 | ManagementAndGeneralAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $17,269 | TotalAmt |
| Program Services | $15,719 | ProgramServicesAmt |
| Fundraising | $1,550 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $15,797 | TotalAmt |
| Program Services | $15,000 | ProgramServicesAmt |
| Management And General | $797 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $17,158 | TotalAmt |
| Program Services | $4,260 | ProgramServicesAmt |
| Management And General | $12,898 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| FEES & LICENSES | $340,758 | $68,906 | $46,856 | $224,996 |
| MISCELLANEOUS | $12,146 | $4,599 | $7,172 | $375 |
| AUTO EXPENSE | $4,062 | $2,578 | $1,484 | $0 |
| REPAIRS & MAINTENANCE | $929 | $0 | $929 | $0 |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,267,809 | TotalAmt |
| Program Services | $3,966,715 | ProgramServicesAmt |
| Management And General | $583,491 | ManagementAndGeneralAmt |
| Fundraising | $717,603 | FundraisingAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Joint Costs | Yes (X) | JointCostsInd |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,547,950 | BOYAmt |
| EOY | $2,257,178 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $202,399 | BOYAmt |
| EOY | $519,490 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $33,859 | BOYAmt |
| EOY | $27,545 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $24,894 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $13,467 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $41,066 | BOYAmt |
| EOY | $11,427 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,422,927 | BOYAmt |
| EOY | $3,462,091 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,248,201 | BOYAmt |
| EOY | $6,277,731 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $238,563 | BOYAmt |
| EOY | $74,542 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $310,935 | BOYAmt |
| EOY | $772,299 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $549,498 | BOYAmt |
| EOY | $846,841 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,392,732 | BOYAmt |
| EOY | $2,078,046 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,305,971 | BOYAmt |
| EOY | $3,352,844 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,698,703 | BOYAmt |
| EOY | $5,430,890 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,248,201 | BOYAmt |
| EOY | $6,277,731 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $732,187 | ReconcilationRevenueExpnssAmt |
| 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 | $6,347,569 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $5,643,146 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,927,494 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $6,471,860 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $3,836,629 | CurrentTaxYearAmt |
| Total | $32,226,698 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $6,347,569 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $5,643,146 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,927,494 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $6,471,860 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $3,836,629 | CurrentTaxYearAmt |
| Total | $32,226,698 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $1,395,890 | SubstantialContributorsTotAmt |
| Public Support Total170 | $30,830,808 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $77,585 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $109,546 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $16,620 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $45,248 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $14,534 | CurrentTaxYearAmt |
| Total | $263,533 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $32,490,231 | TotalSupportAmt |
| Public Support CY170 | 0.94890 | PublicSupportCY170Pct |
| Public Support PY170 | 0.94250 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Form990 Schedule A Part VI Form990ScheduleAPartVIGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | SCHEDULE A PART VI | FormAndLineReferenceDesc |
| Explanation | THE ORGANIZATION CHANGED THEIR YEAR END DATE TO 9/30. | ExplanationTxt |
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 C IRS990ScheduleC
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $5,267,809 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $5,267,809 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $413,390 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $103,348 | FilingOrganizationsTotalAmt |
Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $449,288 | CurrentYearMinus3Amt |
| Current Year Minus2 | $404,647 | CurrentYearMinus2Amt |
| Current Year Minus1 | $506,409 | CurrentYearMinus1Amt |
| Current Year | $413,390 | CurrentYearAmt |
| Total | $1,773,734 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $2,660,601 | LobbyingCeilingAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $112,322 | CurrentYearMinus3Amt |
| Current Year Minus2 | $101,162 | CurrentYearMinus2Amt |
| Current Year Minus1 | $126,602 | CurrentYearMinus1Amt |
| Current Year | $103,348 | CurrentYearAmt |
| Total | $443,434 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $665,151 | GrassrootsCeilingAmt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $816,243 | BeginningYearBalanceAmt |
| Contributions | $225,703 | ContributionsAmt |
| End Year Balance | $1,041,946 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,016,243 | BeginningYearBalanceAmt |
| Other Expenditures | $200,000 | OtherExpendituresAmt |
| End Year Balance | $816,243 | EndYearBalanceAmt |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,016,243 | BeginningYearBalanceAmt |
| End Year Balance | $1,016,243 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,716,243 | BeginningYearBalanceAmt |
| Other Expenditures | $700,000 | OtherExpendituresAmt |
| End Year Balance | $1,016,243 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,716,243 | BeginningYearBalanceAmt |
| End Year Balance | $1,716,243 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Designated Balance EOY | 1.00000 | BoardDesignatedBalanceEOYPct |
| Endowments Held Unrelated Org | 0 | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | 0 | EndowmentsHeldRelatedOrgInd |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $24,894 | OtherCostOrOtherBasisAmt |
| Depreciation | $13,467 | DepreciationAmt |
| Book Value | $11,427 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $11,427 | TotalBookValueLandBuildingsAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $6,016,604 | TotalRevEtcAuditedFinclStmtAmt |
| Other Revenue | $17,208 | OtherRevenueAmt |
| Revenue Not Reported | $17,208 | RevenueNotReportedAmt |
| Revenue Subtotal | $5,999,396 | RevenueSubtotalAmt |
| Investment Expenses Not Incld | $600 | InvestmentExpensesNotIncldAmt |
| Revenue Not Reported Fincl Stmt | $600 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $5,999,996 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $5,284,417 | TotExpnsEtcAuditedFinclStmtAmt |
| Other Expenses Included | $17,208 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $17,208 | ExpensesNotReportedAmt |
| Expenses Subtotal | $5,267,209 | ExpensesSubtotalAmt |
| Investment Expenses Not Incld2 | $600 | InvestmentExpensesNotIncld2Amt |
| Expenses Not Rpt Fincl Stmt | $600 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $5,267,809 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (4 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART V, LINE 4: | THE ENDOWMENT FUNDS ARE A BOARD DESIGNATED RESERVE FUND TO ASSURE THE FOUNDATION'S ABILITY TO RESPOND TO PROGRAM RELATED OPPORTUNITIES (BOTH RESEARCH AND FAMILY SUPPORT) THAT MAY BE BEYOND THE FUNDS AVAILABLE FROM NORMAL OPERATIONS. |
| PART X, LINE 2: | THE FOUNDATION IS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE; ACCORDINGLY, THE ACCOMPANYING FINANCIAL STATEMENTS DO NOT REFLECT A PROVISION OR LIABILITY FOR FEDERAL AND STATE INCOME TAXES. THE FOUNDATION HAS DETERMINED THAT IT DOES NOT HAVE ANY MATERIAL UNRECOGNIZED TAX BENEFITS OR OBLIGATIONS AS OF SEPTEMBER 30, 2021. |
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | LOSS ON SALE OF ASSETS 17,208. |
| PART XII, LINE 2D - OTHER ADJUSTMENTS: | LOSS ON SALE OF ASSETS 17,208. |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (21 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|
| DANA-FARBER CANCER INSTITUTE | |||||||
| 450 BROOKLINE AVE | BOSTON | MA | 02215 | 422263040 | 501(C)(3) | $190,750 | RESEARCH GRANTS |
| HEALTH RESEARCH ALLIANCE | |||||||
| PO BOX 13605 | RESEARCH TRIANGLE PARK | NC | 27709 | 680617198 | 501(C)(3) | $112,500 | RESEARCH GRANT |
| DUKE UNIVERSITY | |||||||
| PO BOX 602651 | CHARLOTTE | NC | 282602651 | 560532129 | GOVT | $150,000 | EARLY CAREER DEVELOPMENT |
| UNIVERSITY OF CINCINNATI | |||||||
| 2830 VICTORY PARKWAY | CINCINNATI | OH | 45206 | 311779020 | GOVT | $150,000 | EARLY CAREER DEVELOPMENT |
| CHILDREN'S NATL MED CTRCHILDREN'S RSCH INST | |||||||
| 111 MICHIGAN AVE NW | WASHINGTON | DC | 20010 | 521640403 | 501(C)(3) | $28,593 | RESEARCH GRANT |
| WASHINGTON UNIVERSITY IN ST LOUIS | |||||||
| 1 BROOKINGS DR | ST LOUIS | MO | 63130 | 431519670 | GOVT | $100,000 | RESEARCH GRANT |
| REGENTS OF UNIVERSITY OF MICHIGAN | |||||||
| G395 WOLVERINE TOWER LOW RISE | ANN ARBOR | MI | 481091279 | 386006309 | GOVT | $70,000 | RESEARCH GRANTS |
| REGENTS OF UNIV CA SAN FRANCISCO | |||||||
| 1111 FRANKLIN ST 12TH FLOOR | OAKLAND | CA | 94607 | 942829914 | GOVT | $100,000 | CLINICAL TRIAL |
| AMERICAN ASSOC FOR CANCER RESEARCH | |||||||
| 615 CHESTNUT ST 17TH FLOOR | PHILADELPHIA | PA | 191064404 | 236251648 | 501(C)(3) | $90,000 | RESEARCH GRANT |
| SYDNEY'S INCREDIBLE DEFEAT OF EWING'S SARCOMA | |||||||
| 1655 N COMMERCE PKWY SUITE 102 | WESTON | FL | 33326 | 453368209 | 501(C)(3) | $89,908 | OPPORTUNITY GRANT |
| CHILDREN'S HEALTHCARE OF ATLANTA | |||||||
| 1600 TULLIE CIRCLE | ATLANTA | GA | 30329 | 582367819 | 501(C)(3) | $5,073 | VS. CANCER GRANT |
| AKRON CHILDREN'S HOSPITAL | |||||||
| 214 W BOWERY ST | AKRON | OH | 44308 | 340714357 | 501(C)(3) | $5,013 | VS. CANCER GRANT |
| BRENNER CHILDREN'S HOSPITAL | |||||||
| MEDICAL CENTER BLVD | WINSTONSALEM | NC | 27157 | 510190238 | 501(C)(3) | $18,569 | VS. CANCER GRANT |
| EAST TENNESSEE CHILDREN'S HOSPITAL | |||||||
| 2018 W CLINCH AVE | KNOXVILLE | TN | 37916 | 626002604 | 501(C)(3) | $14,632 | VS. CANCER GRANT |
| HASBRO CHILDREN'S HOSPITAL | |||||||
| 593 EDDY ST | PROVIDENCE | RI | 02903 | 222538470 | 501(C)(3) | $5,177 | VS. CANCER GRANT |
| CHILDREN'S HOSPITAL OF PITTSBURGH | |||||||
| 4401 PENN AVE | PITTSBURGH | PA | 15224 | 251865744 | 501(C)(3) | $6,933 | VS. CANCER GRANT |
| CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER | |||||||
| 3333 BURNET AVE | CINCINNATI | OH | 45229 | 310833936 | 501(C)(3) | $10,501 | VS. CANCER GRANT |
| OKLAHOMA CHILDREN'S HOSPITAL | |||||||
| 1200 CHILDRENS AVE | OKLAHOMA CITY | OK | 73104 | 731200262 | 501(C)(3) | $13,421 | VS. CANCER GRANT |
| SOCIETY OF NEUROONCOLOGY | |||||||
| PO BOX 273296 | HOUSTON | TX | 772773296 | 760499664 | 501(C)(3) | $8,000 | SYMPOSIUM EXPENSES |
| THE UNIVERSITY OF TEXAS MD ANDERSON CANCER CENTER | |||||||
| PO BOX 301439 UNIT 705 | HOUSTON | TX | 77030 | 746001118 | GOVT | $7,862 | VS. CANCER GRANT |
| OSF HEALTHCARE CHILDREN'S HOSPITAL OF ILLINOIS | |||||||
| 530 NE GLEN OAK AVE | PEORIA | IL | 61637 | 370813229 | 501(C)(3) | $6,673 | VS. CANCER GRANT |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 29 | Total501c3OrgCnt |
Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp (2 entries)
| Grant TypeGrantTypeTxt | Cash GrantCashGrantAmt |
|---|---|
| DIRECT ASSISTANCE TO INDIVIDUALS | $459,794 |
| SCHOLARSHIPS |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | ALL ANNUAL RESEARCH GRANTS ARE REVIEWED BY OUR RESEARCH ADVISORY NETWORK AND EVALUATED ON SEVERAL CRITERIA, INCLUDING SCIENTIFIC MERIT OF THE GRANT APPLICATION; SCIENTIFIC BACKGROUND OF THE RESEARCHERS; THE PEER REVIEWED RESEARCH PUBLICATIONS OF THE PRINCIPLE INVESTIGATORS APPLYING; THE SUPPORTING COLLABORATIVE RESEARCH ENVIRONMENT IN THE RESEARCH INSTITUTION; AND THE VIABILITY OF RESEARCH PROPOSED, AND FACILITIES AVAILABLE. EACH GRANT RECIPIENT IS REQUIRED TO SUBMIT PERIODIC UPDATES, AND A FINAL REPORT BEFORE THE FINAL GRANT PAYMENT IS MADE. EACH RESEARCH APPLICATION HAS TO HAVE A HYPOTHESIS DRIVEN RESEARCH PROPOSAL. EACH APPLICATION MUST HAVE A LIST OF SPECIFIC AIMS THAT ARE TO BE ACHIEVED OVER THE TIMELINE OF THE RESEARCH PROJECT. A TIME LINE IS REQUESTED FOR THE ACHIEVEMENT OF THE SPECIFIC AIMS. THE PROGRESS REPORTS REQUIRE THAT THE ACHIEVEMENT OF SPECIFIC AIMS BE DETAILED WITH A SCIENTIFIC DESCRIPTION OF THE MANNER IN WHICH THEY WERE ACHIEVED. IF AN EVENT HAS OCCURRED THAT ALTERS THE ACHIEVEMENT OF THE SPECIFIC AIMS WITHIN THE TIME LINE OF THE RESEARCH PLAN THE RESEARCHERS MUST GIVE A REASON THAT IT HAS NOT BEEN ACHIEVED AND A NO COST EXTENSION MAY BE REQUESTED AND A NEW TIMELINE IS ESTABLISHED BEFORE THE FINAL PROGRESS REPORT IS ISSUED. EACH GRANT ALLOWS FOR THE OPPORTUNITY OF A SITE VISIT BY THE PBTF AND THESE SITE VISITS ARE MADE BY THE DIRECTOR OF RESEARCH AS WELL AS THE SENIOR SCIENTIFIC RESEARCH ADVISOR, THE PBTF PRESIDENT AS WELL AS THE EXECUTIVE DIRECTOR. RESEARCHERS PRESENT THEIR RESEARCH RESULTS IN PERSON AND THE PBTF ASKS QUESTIONS ABOUT THE RESULTS. ALL GRANT APPLICATIONS AND RESEARCH PROJECTS HAVE THE SAME REQUIREMENTS ON GRANT APPROVAL AND REPORTING REGARDLESS OF THE LOCATION OF THE RESEARCHER AND HIS/HER INSTITUTION. THESE REPORTS ARE REVIEWED BY OUR DIRECTOR OF RESEARCH FUNDING AND OUR CONTRACTED SENIOR SCIENTIFIC RESEARCH ADVISOR. FINAL APPROVAL ON ALL GRANTS IS CONDITIONED ON BOARD OF DIRECTOR APPROVAL. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form990 Of Other Organizations | Yes (X) | Form990OfOtherOrganizationsInd |
| 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | COURTNEY DAVIES | PersonNm |
| Title | PRESIDENT/CEO | TitleTxt |
| Base Compensation Filing Org | $275,380 | BaseCompensationFilingOrgAmt |
| Compensation Based On Rltd Orgs | $0 | CompensationBasedOnRltdOrgsAmt |
| Bonus Filing Organization | $0 | BonusFilingOrganizationAmount |
| Bonus Related Organizations | $0 | BonusRelatedOrganizationsAmt |
| Other Compensation Filing Org | $0 | OtherCompensationFilingOrgAmt |
| Other Compensation Rltd Orgs | $0 | OtherCompensationRltdOrgsAmt |
| Deferred Compensation Flng Org | $0 | DeferredCompensationFlngOrgAmt |
| Deferred Comp Rltd Orgs | $0 | DeferredCompRltdOrgsAmt |
| Nontaxable Benefits Filing Org | $0 | NontaxableBenefitsFilingOrgAmt |
| Nontaxable Benefits Rltd Orgs | $0 | NontaxableBenefitsRltdOrgsAmt |
| Total Compensation Filing Org | $275,380 | TotalCompensationFilingOrgAmt |
| Total Compensation Rltd Orgs | $0 | TotalCompensationRltdOrgsAmt |
| Comp Report Prior990 Filing Org | $0 | CompReportPrior990FilingOrgAmt |
| Comp Report Prior990 Rltd Orgs | $0 | CompReportPrior990RltdOrgsAmt |
Schedule M IRS990ScheduleM
Cars And Other Vehicles CarsAndOtherVehiclesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 5 | ContributionCnt |
| Noncash Contributions Rpt F990 | $58,496 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FAIR MARKET VALUE | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | Yes (1) | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (10 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART III LINE 4A | WHILE COVID-19 CONTINUED TO INCREASE THE HEAVY TOLL A CHILD'S BRAIN TUMOR TAKES ON FAMILIES AND THREATENED PROGRESS TOWARDS A CURE, THE PEDIATRIC BRAIN TUMOR FOUNDATION LED THE CHILDHOOD BRAIN CANCER COMMUNITY IN CONTINUING TO PUSH FORWARD RESEARCH PROJECTS THAT ARE ACCELERATING THE DISCOVERY OF TARGETED THERAPIES, FAMILY SUPPORT PROGRAMS THAT ARE LESSENING THE EMOTIONAL, ECONOMIC, AND PHYSICAL IMPACT OF A CHILD'S BRAIN TUMOR DIAGNOSIS, AND ADVOCACY INITIATIVES THAT ARE RAISING AWARENESS ABOUT THE NEED TO IMPROVE OUTCOMES FOR PATIENT AND INCREASE FUNDING OF PEDIATRIC BRAIN TUMOR SCIENTIFIC RESEARCH. SUMMARY OF 2021 RESEARCH INVESTMENTS: PBTF'S MOMENTUM IN FUNDING CUTTING-EDGE PEDIATRIC BRAIN TUMOR RESEARCH IN 2021, DESPITE THE LINGERING IMPACT AND SLOWDOWNS AS A RESULT OF THE PANDEMIC, CONTINUED TO PICK UP SPEED. ALL EXISTING GRANTS CONTINUED IN THEIR PROGRESS AND NEW RESEARCH INITIATIVES WERE LAUNCHED. PBTF EMBRACED THE SCIENTIFIC COMMUNITY AND REINFORCED OUR COMMITMENT TO CONTINUING TO SUPPORT THEIR LIFE-CHANGING PROJECTS. THE PEDIATRIC BRAIN TUMOR FOUNDATION'S RESEARCH MISSION IS GUIDED BY OUR COMMITMENT TO MAXIMIZE THE NUMBER OF LIFE-CHANGING THERAPIES MOVING FROM DEVELOPMENT THROUGH COMMERCIALIZATION TO FIND TARGETED TREATMENTS FOR ALL KIDS BATTLING BRAIN TUMORS. THE FOLLOWING ARE PROJECTS THAT RECEIVED FUNDING FROM PBTF IN 2021 BASED ON THE SPECIFIC STRATEGIC INVESTMENT CATEGORY UNDER WHICH IT FALLS. BASIC SCIENCE AND CORE PROJECT RESOURCES: INVESTING IN NOVEL BASIC SCIENCE CONCEPTS AND CORE RESOURCES IN THE PEDIATRIC BRAIN TUMOR RESEARCH FIELD IS ESSENTIAL TO PBTF'S RESEARCH INVESTMENT STRATEGY. THERE ARE FEW FUNDING SOURCES AVAILABLE TO SCIENTISTS WHO ARE FOCUSED ON 'OUT OF THE BOX' IDEAS FOR CRACKING THE CODE ON ERADICATING PEDIATRIC BRAIN TUMORS; PBTF'S COMMITMENT TO BASIC SCIENCE AND CORE PROJECT RESOURCES PROVIDES THE FINANCIAL SUPPORT AND OPPORTUNITIES THAT RESEARCHERS NEED TO TEST PROMISING NEW HYPOTHESES THAT WILL LEAD TO THE NEXT TARGETED THERAPY. PBTF'S PARTNERSHIP WITH THE BRAIN TUMOR FUNDERS COLLABORATIVE ENTERED ITS THIRD YEAR IN SUPPORT OF THE IMMUNOTHERAPY RESEARCH INITIATIVE FOR THE PROJECT AT THE UNIVERSITY OF PITTSBURGH ENTITLED "INTERROGATING ANTI-TUMOR T-CELLS TO DEVELOP ADOPTIVE CELL TRANSFER (ACT) IMMUNOTHERAPY FOR PEDIATRIC HIGH-GRADE GLIOMAS" UNDER THE DIRECTION OF PRINCIPAL INVESTIGATOR DR. GARY KORNBASCH. $112,500 WAS PAID TO THE BTFC IN 2021 TO COVER THIS GRANT WITH A TOTAL INVESTMENT COMMITMENT OF $450,000 OVER THREE YEARS. HARNESSING THE PEDIATRIC HIGH-GRADE GLIOMA PATIENT'S IMMUNE SYSTEM TO ATTACK THE TUMOR IS A NOVEL IDEA IN THE TREATMENT OF ONE OF THE DEADLIEST TYPES OF BRAIN TUMORS. DRS. CASTRO AND LOWENSTEIN FROM THE UNIVERSITY OF MICHIGAN'S CHAD CARR PEDIATRIC BRAIN TUMOR CENTER ARE GRANT AWARDEES FOR A MULTI-YEAR PROJECT ENTITLED "NOVEL IMMUNE MEDIATED-GENE THERAPY FOR PEDIATRIC HIGH-GRADE GLIOMA" WITH AN AWARD TOTALING $669,533. AT THE INVESTIGATORS' REQUEST, THIS AWARD HAS BEEN EXTENDED THROUGH 2022 WITH AN UPCOMING FINAL PAYMENT OF $219,844. IN 2021, PBTF EMBARKED ON A NEW GRANT AWARD WITH THE UNIVERSITY OF MICHIGAN FOR A PROJECT ENTITLED "RAPID MOLECULAR TESTING OF HIGH GRADE GLIOMAS." IN THIS STUDY, THE INVESTIGATORS LEVERAGE LAMP AMPLIFICATION TECHNOLOGY AND HANDHELD ELECTRONIC SEQUENCING TO ANALYZE MOLECULAR ALTERATIONS, DELETIONS AND MUTATIONS IN BLOOD AND FLUID SAMPLES FROM PATIENTS BATTLING THE MOST AGGRESSIVE FORMS OF PEDIATRIC BRAIN TUMORS. THE AIM OF THE PROJECT IS TO DEVELOP A TECHNIQUE FOR A MORE RAPID DIAGNOSIS OF TUMORS IN ORDER FOR CLINICIANS TO MORE ACCURATELY PRESCRIBE TARGETED TREATMENTS FOR THE SPECIFIC ANOMALIES THAT ARE IDENTIFIED BEFORE THE TUMOR MUTATES INTO A DIFFERENT FORM. THIS IS A ONE-YEAR AWARD IN THE AMOUNT OF $70,000. PEDIATRIC DRUG DOSING IS AN UNDERSTUDIED AREA AS MOST CLINICAL TRIALS DETERMINE DRUG DOSING RECOMMENDATIONS FOR PHASE I TRIALS IN KIDS BASED ON ADULT STANDARDS. IN ORDER TO DEVELOP STANDARDS FOR MORE EFFECTIVE DRUG DOSING IN KIDS, PBTF FUNDED A RESEARCH PROJECT ENTITLED "FUNCTIONAL ENGAGEMENT AND EFFECT OF RAF-TARGETED THERAPIES IN GLIOMAS" IN PARTNERSHIP WITH THE AMERICAN ASSOCIATION FOR CANCER RESEARCH. THE PRINCIPAL INVESTIGATOR FOR THE AWARD IS DR. KARISA SCHRECK AT JOHNS HOPKINS MEDICAL CENTER. THE TOTAL AWARD IS $200,000 OVER TWO YEARS. THE FINAL PAYMENT OF $90,000 WAS DISTRIBUTED IN 2021. IN 2021, A FINAL PAYMENT IN THE AMOUNT OF $66,000 WAS DELIVERED TO THE DANA FARBER CANCER INSTITUTE IN SUPPORT OF A TWO-YEAR CORE RESOURCE COMMITMENT TO SUPPORT THE HIRING OF A CLINICAL RESEARCH ASSISTANT (TOTAL AWARD $132,000). THIS INDIVIDUAL IS RESPONSIBLE FOR TUMOR TISSUE COLLECTION BY OBTAINING PARENTS' CONSENT O PRIOR TO SURGERY AND SHEPHERDING TISSUE HARVESTING DURING SURGERIES AND BIOPSIES. WITH AN INCREASE IN VIABLE TISSUE SAMPLES, SCIENTIFIC RESEARCH IS FUELED WITH MATERIAL TO TEST NEW HYPOTHESES AND POTENTIAL TREATMENT OPTIONS. THE MULTI-INSTITUTIONAL GRANT ENTITLED "OPTIMIZING OUTCOMES FOR PLGG PATIENTS" AWARDED FUNDS TO TWO OF THE THREE INSTITUTIONS ENGAGED IN THIS PROJECT. CHILDREN'S NATIONAL MEDICAL CENTER RECEIVED $28,593 AND CHILDREN'S HOSPITAL OF ATLANTA RECEIVED $8,210 AS THE PROJECT ENTERED THE SECOND YEAR OF PRODUCTIVITY. THE PURPOSE OF THIS PROJECT IS TO PERFORM A META ANALYSIS ON A COHORT OF PLGA SURVIVORS, ANALYZING THE OUTCOMES BASED ON QUALITY OF LIFE, TREATMENTS AND SPECIFIC MOLECULAR MUTATION. THE TOTAL GRANT AWARD FOR THIS PROJECT IS $364,141 OVER THREE YEARS. WASHINGTON UNIVERSITY OF ST. LOUIS'S PROJECT ENTITLED "HUMAN IPSC PLGA MODELS FOR THERAPEUTIC DRUG DISCOVERY AND EVALUATION" RECEIVED A SECOND YEAR OF FUNDING IN THE AMOUNT OF $100,000 IN 2021. THIS PROJECT (TOTAL OF 3 YEARS) IS WORKING TO CREATE A MOUSE MODEL FOR PLGA BRAIN TUMORS. WITHOUT MOUSE MODELS, SCIENTISTS ARE HAMPERED IN TESTING NEW THERAPIES AGAINST THE SPECIFIC TUMOR MUTATION WHICH IN TURN SLOWS THE PIPELINE OF THERAPY DEVELOPMENT. EARLY CAREER DEVELOPMENT AWARDEES FROM DUKE UNIVERSITY AND CHILDREN'S HOSPITAL OF CINCINNATI BOTH RECEIVED GRANT FUNDING IN 2021 TO SUPPORT PROJECTS ENTITLED "IDENTIFYING BRAINSTEM GLIOMA SUBTYPES THAT CAN BE RADIOSENSITIZED BY ATM INHIBITION AND "MAINTENANCE OF DIPG BLOOD-BRAIN BARRIER INTEGRITY BY ANGIOPOLETIN1" RESPECTIVELY. BOTH PROJECTS RECEIVED $150,000 FOR A TOTAL OF $300,000, WHICH IS PART OF A THREE YEAR GRANT AWARD. THESE PROJECTS WERE IN THEIR SECOND YEAR OF FUNDING IN 2021. GLOBAL TRAINING/EDUCATION: INTERNATIONAL COLLABORATION IN THE SCIENTIFIC COMMUNITY IS THE SINGLE MOST IMPORTANT INGREDIENT IN ACCELERATING RESEARCH PRODUCTIVITY. PBTF'S SUPPORT FOR ACADEMIC-DRIVEN INTERNATIONAL RESEARCH MEETINGS SPURS INNOVATION AND FACILITATES THE SHARING OF TIMELY RESEARCH DISCOVERIES ACROSS DISCIPLINES, SUB-SPECIALTIES, COUNTRIES, AND INSTITUTIONS. IN 2021, PBTF SPONSORED THE SOCIETY OF NEUROONCOLOGY'S PEDIATRIC BRAIN TUMOR BASIC AND TRANSLATIONAL SCIENCE CONFERENCE WHICH WAS CONVENED VIRTUALLY IN 2021. SCIENTIFIC MEETINGS SUCH AS THESE ARE A CRITICAL CORNERSTONE FOR THE RESEARCH COMMUNITY TO CONNECT AND SHARE REAL TIME DATA AND RESULTS, BUILD RELATIONSHIPS AND BREAKDOWN SILOS IN ORDER TO ACCELERATE THE PACE OF CUTTING-EDGE RESEARCH. THE SPONSORSHIP WAS $8,000 FOR THIS PREEMINENT MEETING. CLINICAL TRIALS: WHILE COVID DELAYED THE PACE OF MANY PROJECTS IN 2020 -- ESPECIALLY CLINICAL TRIALS, 2021 SAW A RESURGENCE OF TRIALS RE-OPENING FOR ENROLLMENT. THESE TRIALS CHALLENGE 'GOLD STANDARD' TREATMENTS AND EXPLORE NEW POSSIBILITIES FOR CHILDREN WHO HAVE RUN OUT OF OTHER EFFECTIVE TREATMENT OPTIONS. IN 2021, PBTF AWARDED CLINICAL TRIAL GRANTS TO: THE PEDIATRIC PACIFIC NEURO ONCOLOGY CONSORTIUM (PNOC) FOR A TRIAL ENTITLED "PNOC021-COMBINATORIAL CLINICAL TRIAL" WITH THE FUNDS BENEFITING THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO. THIS IS A MULTI-YEAR AWARD TOTALING $300,000 WITH $100,000 DISBURSED IN 2021. THE DANA FARBER CANCER INSTITUTE (DFCI) FOR A TRIAL ENTITLED, "PHASE I/II TRIAL OF MEK162 IN LOW GRADE GLIOMA". THIS IS A MULTI-YEAR AWARD TOTALING $249,500 WITH $124,750 DISBURSED IN 2021. PROJECT OPEN DIPG IS A CONTINUATION OF A GRANT AWARDED IN 2019 FOR A CLINICAL TRIAL ENTITLED "PHASE 1 TRIAL OF MARIZOMIB ALONE AND IN COMBINATION WITH PANOBINOSTAT FOR CHILDREN WITH DIFFUSE INTRINSIC PONTINE GLIOMA". THIS STUDY WAS PAUSED FOR ENROLLMENT IN 2020 AND EARLY 2021 DUE TO THE PANDEMIC; HOWEVER, IT HAS REOPENED AND IS MOVING FORWARD. THE GRANT AWARD WAS FOR $16,667 WHICH WAS FUNDED IN 2019, WITH THE GRANTEE REQUESTING A NO-COST EXTENSION THROUGH DECEMBER 2022. |
| PART III LINE 4A CONTINUED | FAMILY SUPPORT PROGRAM SERVICE ACCOMPLISHMENTS FROM COVID-19'S IMPACT ON PATIENTS' HEALTH AND FAMILIES' FINANCIAL STABILITY TO THE UNINTENDED CONSEQUENCES OF STRINGENT HOSPITAL SAFETY PROTOCOLS ON PATIENT CARE, THE PANDEMIC CONTINUED TO POSE SIGNIFICANT RISKS TO CHILDREN WITH BRAIN TUMORS AND THEIR FAMILIES IN 2021. BY CONTINUING TO IMPROVE THE ORGANIZATION'S APPROACH TO PATIENT FAMILY FOLLOW-UP, GROWING OUR COLLABORATIONS WITH HOSPITAL CARE PARTNERS, AND EXPANDING VIRTUAL OFFERINGS TO INCLUDE NEW SUPPORT GROUPS AND DIGITAL RESOURCES, PBTF INCREASED ITS ENGAGEMENT WITH FAMILIES BY 14.5% YEAR-OVER-YEAR AND INCREASED ITS REACH TO NEW FAMILIES BY 36.3% YEAR-OVER-YEAR. PBTF'S MONTHLY WEBINAR SERIES CONTINUED TO GROW IN 2021, WITH 10 WEBINARS COVERING THE FULL CONTINUUM OF CARE. INFORMED BY PATIENT FAMILY FEEDBACK, TOPICS FOCUSED ON NAVIGATING THE EMOTIONAL, INFORMATIONAL, AND LOGISTICAL CHALLENGES OF THE PEDIATRIC BRAIN TUMOR JOURNEY, INCLUDING EXPLORING TARGETED THERAPIES, UNDERSTANDING PEDIATRIC BRAIN TUMOR TYPES AND TREATMENTS, ENGAGING IN ADVOCACY, AND NAVIGATING SOCIAL SKILLS CHALLENGES. PATIENT FAMILIES RESPONDED POSITIVELY TO THIS YEAR'S TOPICS, WITH ATTENDANCE RATES INCREASING FROM 49% TO 55% YEAR-OVER-YEAR. AS PART OF PBTF'S COMMITMENT TO HELPING PATIENT FAMILIES NAVIGATE THE CHALLENGES OF COVID-19, PBTF'S JUNE WEBINAR WELCOMED THREE RENOWNED EXPERTS TO DISCUSS THE CURRENT STATE OF COVID-19 VACCINE STUDIES IN CHILDREN AND CONSIDERATIONS FOR VACCINATING CHILDREN IN TREATMENT AND POST-TREATMENT FOR A BRAIN TUMOR. PBTF'S SUPPORT OF FAMILIES THROUGH THE BUTTERFLY FUND DELIVERED $456,962.40 IN FINANCIAL RELIEF (A 3% INCREASE YEAR-OVER-YEAR), WITH $1258 PROVIDED TO EACH FAMILY ON AVERAGE. OUR BUTTERFLY FUND PARTNER HOSPITAL NETWORK ALSO EXPANDED TO PROVIDE AID TO PEDIATRIC BRAIN TUMOR PATIENTS IN TREATMENT AT C.S. MOTT CHILDREN'S HOSPITAL, INCREASING THE TOTAL NUMBER OF HOSPITAL PARTNERS TO 19 INSTITUTIONS NATIONWIDE. 52.3% OF BUTTERFLY FUND SUPPORT IN 2021 ASSISTED FAMILIES WITH HOUSING NEEDS, WITH OTHER KEY AREAS OF FINANCIAL ASSISTANCE INCLUDING SUPPORT FOR FUNERALS AND TRAVEL FOR TREATMENT. THE NATIONAL PEER TO PEER MENTORING PROGRAM CONTINUED TO GROW, WITH A 125% YEAR-OVER-YEAR INCREASE OF PATIENT FAMILIES MATCHED WITH TRAINED MENTORS WHO HAVE EXPERIENCED THE CHALLENGES OF THE CHILDHOOD BRAIN TUMOR JOURNEY. PBTF EXPANDED ITS SUPPORT OF THE HISPANIC AND LATINX PATIENT FAMILY COMMUNITY WITH THE INTRODUCTION OF THE STARFOLIO RESOURCE GUIDEBOOK IN SPANISH AND BROADENING OUR MONTHLY, CALIFORNIA-BASED SPANISH-LANGUAGE SUPPORT GROUPS TO REACH A NATIONWIDE PATIENT FAMILY AUDIENCE. ALTHOUGH PANDEMIC-RELATED CANCELLATIONS OF IN-PERSON SCHOOL AND SPORTS ACTIVITIES CONTINUED TO ADVERSELY IMPACT VS. CANCER FUNDRAISING EFFORTS THAT DIRECTLY FUND HOSPITAL GRANTS IN TEAMS' LOCAL COMMUNITIES, PBTF WAS ABLE TO CONTINUE ITS SUPPORT OF CRITICAL PEDIATRIC PATIENT SUPPORT PROGRAMS AT 49 HOSPITALS. PBTF'S VS. CANCER GRANTS REACHED 1203 PEDIATRIC BRAIN TUMOR FAMILIES IN 2021 AND SAFEGUARDED INITIATIVES SUCH AS: - UMASS MEMORIAL HEALTH'S MUSIC THERAPY THERAPY PROGRAM: UMASS MEMORIAL HEALTH HAS BEEN ABLE TO INCREASE THEIR MUSIC THERAPIST'S SCHEDULE IN THE LAST FOUR YEARS, SPECIFICALLY NOW PROVIDING SUPPORT TO THE HEMATOLOGY/ONCOLOGY CLINIC. EACH WEEK THE MUSIC THERAPIST WORKS 20 HOURS ON THE INPATIENT FLOOR AND 4 HOURS IN THE PEDIATRIC OUTPATIENT HEMATOLOGY/ONCOLOGY CLINIC. THE THERAPIST SEES PATIENTS INDIVIDUALLY AT THEIR BEDSIDE OR INFUSION CHAIR OR IN THE HOSPITAL'S PLAYROOM, TEACHING EVIDENCE-BASED METHODS TO RELAX AND MANAGE ANXIETY WITH MEANINGFUL, PATIENT-SELECTED ACTIVITIES. - MD ANDERSON'S AYA SCHOLARSHIPS: ADOLESCENTS AND YOUNG ADULTS HAVE EDUCATIONAL AND CAREER GOALS THAT ARE OFTEN DERAILED BY THEIR CANCER DIAGNOSIS/TREATMENT. EVEN AFTER TREATMENT IS OVER AND THEY WORK ON RECOVERING FROM THE PHYSICAL DAMAGE THAT HAS BEEN DONE, MANY PATIENTS/FAMILIES HAVE EXHAUSTED THEIR FINANCIAL SAVINGS TO PAY FOR CANCER TREATMENT. THE MD ANDERSON AYA SCHOLARSHIP HELPS PATIENTS PURSUE THEIR LIFE AND CAREER GOALS THROUGH VOCATIONAL SCHOOLS, COMMUNITY COLLEGE, FOUR-YEAR UNIVERSITIES, AND POST-GRADUATE PROGRAMS. - PHOENIX CHILDREN'S HARDSHIP FUND: VS. CANCER FUNDING PROVIDED BY PBTF TO PHOENIX CHILDREN'S HOSPITAL ADDRESSES THE FINANCIAL STRESS A FAMILY FACES WHEN RECEIVING TREATMENT. PHOENIX CHILDREN'S HISTORICALLY SERVES LOW-TO-MODERATE INCOME FAMILIES WITH 50% OR MORE OF THE FAMILIES LIVING AT OR BELOW POVERTY LEVEL. THEIR HARDSHIP FUND COVERS INCIDENTAL COSTS ASSOCIATED WITH HOSPITAL STAYS INCLUDING MEAL ASSISTANCE, GAS, LODGING AND TRANSPORTATION. FUNDING FROM PBTF'S 2021 VS. CANCER GRANT WILL SERVE APPROXIMATELY 84 FAMILIES. - DUKE'S PEDIATRIC NEUROPSYCHOLOGY PATIENT EVALUATION EFFORTS: THE LEARNING NEEDS OF PEDIATRIC BRAIN TUMOR PATIENTS ARE UNIQUE AND COMPLEX. DUKE'S PEDIATRIC NEUROPSYCHOLOGISTS PARTNER WITH MEMBERS OF THE SOCIAL WORK TEAM TO OUTLINE NECESSARY SUPPORT AT SCHOOL AND TO GUIDE ADVOCACY FOR ACCESSING THOSE SUPPORTS. THE RECOMMENDATIONS ARE BASED ON COGNITIVE SCREENING TOOLS AND OTHER COMPREHENSIVE EVALUATIONS FUNDED BY PBTF'S VS. CANCER GRANT. IT IS ANTICIPATED THAT APPROXIMATELY 30 PEDIATRIC BRAIN TUMOR PATIENTS WILL BENEFIT IN THE PROGRAM FROM THIS GRANT. PBTF LEADERSHIP ALSO SHARED FAMILY SUPPORT INSIGHTS WITH THE BROADER HEALTHCARE AND MEDICAL COMMUNITIES BY PRESENTING AND EXHIBITING AT THE ANNUAL MEETINGS FOR THE SOCIETY FOR NEUROONCOLOGY, ASSOCIATION OF PEDIATRIC ONCOLOGY SOCIAL WORKERS AND ASSOCIATION OF PEDIATRIC HEMATOLOGY ONCOLOGY NURSES. 2021 EXPANSION OF PBTF'S ADVOCACY LEADERSHIP PBTF'S MISSION OF CARE. CURE. THRIVE. IS ACHIEVED THROUGH FOCUSED PROGRAMS TO SUPPORT FAMILIES AS THEY NAVIGATE THE PEDIATRIC BRAIN TUMOR JOURNEY, AS WELL AS SUPPORT SCIENTISTS IN DISCOVERING NOVEL, MORE EFFECTIVE TREATMENTS FOR ALL TYPES OF BRAIN TUMORS IN KIDS. THESE EFFORTS ARE STRENGTHENED BY THE PBTF'S ADVOCACY INITIATIVES WHICH HELP SHINE THE SPOTLIGHT ON THIS PERNICIOUS DISEASE, THE #1 CAUSE OF CANCER DEATH IN KIDS. WHILE PBTF'S ADVOCACY SERVICES AND PROGRAMS ARE NON-GRANT BEARING, THEY DO HAVE A MAJOR IMPACT ON THE LEGISLATION THAT IS PASSED AND BRING ATTENTION TO THE DISEASE IN A BROADER CONTEXT THAN JUST THE CHILDHOOD CANCER COMMUNITY. IN ADDITION TO OUR DIRECT PATIENT ADVOCACY SUPPORT OF FAMILIES, PBTF CONTINUED TO SERVE AS THE LEADING CHAMPION FOR THE PEDIATRIC BRAIN TUMOR COMMUNITY THROUGH THE FOLLOWING INITIATIVES. IN 2021, THE PBTF WAS AN ACTIVE PARTICIPANT IN TWO LEGISLATIVE ADVOCACY DAYS ON CAPITOL HILL: - ACTION DAYS (APRIL 27, 2021): IN PARTNERSHIP WITH THE ALLIANCE FOR CHILDHOOD CANCER, ACTION DAYS RESULTED IN OVER 300 PEDIATRIC CANCER ADVOCATES FROM 39 STATES WHO MET WITH OVER 200 CONGRESSIONAL LEADERS TO AMPLIFY THE VOICES OF THE CHILDHOOD CANCER COMMUNITY. - HEAD TO THE HILL (MAY 4, 2021): IN PARTNERSHIP WITH THE NATIONAL BRAIN TUMOR SOCIETY, HEAD TO THE HILL RESULTED IN 410 BRAIN TUMOR ADVOCATES FROM 46 STATES TAKING PART IN 286 CONGRESSIONAL MEETINGS TO DO THE SAME. BOTH EFFORTS INCLUDED CONGRESSIONAL 'ASKS' WHICH WOULD RESULT IN CONTINUED FUNDING OF SPECIFIC PEDIATRIC CANCER AND PEDIATRIC BRAIN TUMOR RESEARCH INVESTMENTS THROUGH EXISTING LEGISLATION. THESE PEDIATRIC CANCER AND BRAIN CANCER ADVOCACY EFFORTS ARE DRIVING OUTCOMES FOR THE PATIENTS WE SERVE BY HELPING TO RAISE AWARENESS AND ENSURE THAT PEDIATRIC BRAIN TUMOR SCIENTIFIC RESEARCH IS PROPERLY FUNDED. PBTF IS PROUD OF THE ADVOCATES THAT ARE HELPING TO DRIVE BETTER OUTCOMES BY ENSURING THAT THE FUNDING FOR PEDIATRIC BRAIN TUMOR SCIENTIFIC RESEARCH IS AVAILABLE. FURTHERMORE, PBTF ESTABLISHED A LEADERSHIP POSITION IN THE COALITION AGAINST CHILDHOOD CANCER (CAC2) WITH THE INSTALLATION OF PBTF'S NATIONAL DIRECTOR OF RESEARCH AND ADVOCACY AS CAC2'S CURRENT BOARD CHAIR. THE MISSION OF THIS VOLUNTEER-LED, MEMBERSHIP-BASED ORGANIZATION IS TO FOSTER AND SUSTAIN GREATER LEVELS OF COORDINATED ACTION, INFORMATION EXCHANGE, EDUCATION AND LEARNING AND BROAD-BASED COLLABORATION BETWEEN KEY STAKEHOLDERS IN THE CHILDHOOD CANCER ARENA. THE OUTCOME OF WHICH IS TO DRAW GREATER ATTENTION AND RESOURCES TO THE DEADLIEST CHILDHOOD DISEASE IN ORDER TO CHANGE THE OUTCOME AND INCREASE RESOURCES FOR ALL CHILDREN UNDERGOING A CANCER DIAGNOSIS. A NUMBER OF CAC2'S PIVOTAL PROJECTS WERE DESIGNED AND IMPLEMENTED UNDER THE STEWARDSHIP OF THE NEW BOARD CHAIR INCLUDING THE #CANCELCHILDHOODCANCER CAMPAIGN; AN ENDORSEMENT LETTER SIGN-ON INITIATIVE; RESEARCHING, WRITING AND PRESENTING AT SIOP A NEW ETHICS DISCUSSION ENTITLED "DEVELOPING A WORKING PAPER TO CULTIVATE ETHICALLY SUSTAINABLE RELATIONSHIPS AMONG STAKEHOLDERS WHEN NONPROFITS FUND PEDIATRIC CANCER TRIALS; AND A NUMBER OF OTHER PROJECTS. ALL OF THESE EFFORTS SERVE TO DRAW FURTHER ATTENTION TO THIS DISEASE ON A LOCAL, NATIONAL AND GLOBAL SCALE. |
| PART III LINE 4A CONTINUED | IN 2021, PBTF ALSO SUPPORTED CUREFEST, THE NATION'S LARGEST FAMILY-LED, FAMILY-ATTENDED ADVOCACY EVENT IN WASHINGTON, DC ON SEPTEMBER 24TH WITH A $1700 GRANT. THIS EVENT DREW ATTENDEES FROM 50 STATES AND 68 COUNTRIES AND WAS LIVE STREAMED TO OVER 36,000 VIEWERS ACROSS THE GLOBE. THE OBJECTIVE OF THE EVENT IS TO DRAW ATTENTION TO THE PLIGHT OF PEDIATRIC CANCER PATIENTS AND THEIR FAMILIES AND ENGAGE IN PRODUCTIVE CONVERSATIONS AND RELATIONSHIP BUILDING EVENTS BETWEEN PATIENTS, FAMILIES, SURVIVORS, NON-PROFIT ORGANIZATIONS, LEGISLATORS, MEDIA, AND THE GENERAL PUBLIC. WHILE THIS EVENT TARGETS THE WIDER CHILDHOOD CANCER AUDIENCE, THE SUPPORT FROM PBTF WAS LEVERAGED IN PARTNERSHIP WITH THE DIPG COMMUNITY TO HOST THE INAUGURAL SUNRISE RESEARCH/CLINICIAN SESSION AND BREAKFAST. WITH OVER 210 ATTENDEES ATTENDING THIS NEWEST EVENT, THERE WAS GREAT ENERGY AROUND CHANGING OUTCOMES FOR CHILDREN BATTLING THE DEADLIEST OF BRAIN TUMORS. |
| FORM 990, PART VI, SECTION A, LINE 1 | THE BOARD OF DIRECTORS MAY, BY RESOLUTION, DESIGNATE TWO (2) OR MORE DIRECTORS TO CONSTITUTE AN EXECUTIVE COMMITTEE, WHICH COMMITTEE, TO THE EXTENT PROVIDED IN SUCH RESOLUTION, SHALL HAVE AND MAY EXERCISE ALL OF THE AUTHORITY OF THE BOARD OF DIRECTORS IN THE MANAGEMENT OF THE CORPORATION EXCEPT AS OTHERWISE REQUIRED BY LAW. ALL MEMBERS OF THE EXECUTIVE COMMITTEE SHALL BE DIRECTORS OF THE CORPORATION. VACANCIES IN THE MEMBERSHIP OF THE COMMITTEE SHALL BE FILLED BY THE BOARD OF DIRECTORS AT ANY ANNUAL OR SPECIAL MEETING OF THE BOARD OF DIRECTORS. THE EXECUTIVE COMMITTEE SHALL KEEP REGULAR MINUTES OF ITS PROCEEDINGS AND REPORT THE SAME TO THE BOARD. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE RETURN WAS PREPARED BY AN INDEPENDENT ACCOUNTANT WITH ASSISTANCE AND OVERSIGHT BY MANAGEMENT. THE CFO AND PRESIDENT REVIEWED THE RETURN WITH THE PREPARERS AT MULTIPLE STAGES OF COMPLETION. UPON RECEIVING A FINAL DRAFT, THE RETURN WAS PRESENTED AT A SCHEDULED BOARD MEETING. THE RETURN WAS PRESENTED TO THE FULL BOARD BY A MEMBER OF THE ACCOUNTING FIRM AND THE MANAGEMENT OF THE ORGANIZATION, AND A PERIOD OF TIME FOR QUESTIONS AND COMMENTS WAS ALLOWED. |
| FORM 990, PART VI, SECTION B, LINE 12C | ALL FINANCIAL TRANSACTIONS (BOTH REVENUE AND EXPENSE) ARE CONDUCTED WITH THE KNOWLEDGE AND/OR APPROVAL OF EITHER THE PRESIDENT/CEO OR THE CFO. THESE TRANSACTIONS ARE REVIEWED FOR ANY POTENTIAL CONFLICTS OF INTERESTS. ANY ISSUES ARE BROUGHT TO THE ATTENTION OF THE EXECUTIVE COMMITTEE. |
| FORM 990, PART VI, SECTION B, LINE 15 | THE BOARD'S EXECUTIVE COMMITTEE DETERMINES COMPENSATION AND BENEFITS FOR THE PRESIDENT/CEO AFTER REVIEWING THE MOST CURRENT GUIDESTAR NONPROFIT COMPENSATION REPORT, OTHER COMPARABLE DATA, SCOPE OF RESPONSIBILITY, SIZE OF ORGANIZATION, RESPONSIBILITY AND BUDGET TO DETERMINE THE REASONABLENESS OF THE SALARY. |
| FORM 990, PART VI, SECTION C, LINE 18 | RECENT FILINGS OF THE FORM 990 ARE AVAILABLE ONLINE AT CURETHEKIDS.ORG, GUIDESTAR, AND CHARITY NAVIGATOR. |
| FORM 990, PART VI, SECTION C, LINE 19 | THE FOUNDATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE THROUGH INSPECTION AT THE ADMINISTRATIVE OFFICE IN FAIRVIEW, NC. ADDITIONALLY, THESE DOCUMENTS ARE MADE AVAILABLE TO ALL STATE GOVERNMENTS THAT REQUIRE ANNUAL FILING OF CHARITABLE ORGANIZATIONS. |
| FORM 990, PART XII, LINE 2C: | THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR. |