INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH: Form 990, tax year 2018
View the entire original 990 at ProPublica ↗
- Organization
- INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH (EIN 27-0950477)
- Tax period
- 2018-01-01 to 2018-12-31
- Filed
- 2019-11-11
- IRS object ID
- 201923159349304182
- Schema version
- 2018v3.1
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule M
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2019-11-11T17:26:15-08:00 | ReturnTs |
| Tax Period End | 2018-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | JUDY L ARFA CPA PLLC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 4265 SAN FELIPE 1100 | AddressLine1Txt |
| City | HOUSTON | CityNm |
| State Abbreviation | TX | StateAbbreviationCd |
| ZIP | 77027 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2018-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 270950477 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | International Foundation For CDKL5 Research | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | INTE | BusinessNameControlTxt |
| Phone | 9705762740 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | P O Box 926 | AddressLine1Txt |
| City | Wadsworth | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 44282 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Amanda Jaksha | PersonNm |
| Person Title | Treasurer | PersonTitleTxt |
| Phone | 9705762740 | PhoneNum |
| Signature | 2019-11-09 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | Judy L Arfa CPA | PreparerPersonNm |
| PTIN | P01070261 | PTIN |
| Phone | 7132403315 | PhoneNum |
| Preparation | 2019-11-11 | PreparationDt |
Filing Security Information FilingSecurityInformation
IP Address IPAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| I Pv4 Address | 70.138.147.111 | IPv4AddressTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IP | 2019-11-11 | IPDt |
| IP Tm | 17:26:08 | IPTm |
| IP Timezone | PS | IPTimezoneCd |
| Filing License Type | P | FilingLicenseTypeCd |
| At Submission Creation Device Id | 8F72E1802C78938FD4E707A04890A8FFF88C15F4 | AtSubmissionCreationDeviceId |
| At Submission Filing Device Id | 8F72E1802C78938FD4E707A04890A8FFF88C15F4 | AtSubmissionFilingDeviceId |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2018 | TaxYr |
| Build TS | 2020-03-31 21:24:44Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | Amanda Jaksha | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 2228 Podtburg Cir | AddressLine1Txt |
| City | Johnstown | CityNm |
| State Abbreviation | CO | StateAbbreviationCd |
| ZIP | 80534 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $555,571 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | www.cdkl5.com | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2009 | FormationYr |
| Legal Domicile State | OH | LegalDomicileStateCd |
| Activity Or Mission | To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5. | ActivityOrMissionDesc |
| Voting Members Governing Body | 10 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 10 | VotingMembersIndependentCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Total Volunteers | 12 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $323,231 | PYContributionsGrantsAmt |
| CY Contributions Grants | $416,145 | CYContributionsGrantsAmt |
| CY Program Service Revenue | $71,000 | CYProgramServiceRevenueAmt |
| PY Investment Income | $5,245 | PYInvestmentIncomeAmt |
| CY Investment Income | $5,013 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$1,276 | PYOtherRevenueAmt |
| CY Other Revenue | -$2,149 | CYOtherRevenueAmt |
| PY Total Revenue | $327,200 | PYTotalRevenueAmt |
| CY Total Revenue | $490,009 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $214,875 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $558,849 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| CY Salaries Comp Emp Bnft Paid | $0 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $5,159 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $45,757 | PYOtherExpensesAmt |
| CY Other Expenses | $248,803 | CYOtherExpensesAmt |
| PY Total Expenses | $260,632 | PYTotalExpensesAmt |
| CY Total Expenses | $807,652 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $66,568 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$317,643 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $913,861 | TotalAssetsBOYAmt |
| Total Assets EOY | $649,889 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $29,924 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $90,508 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $883,937 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $559,381 | NetAssetsOrFundBalancesEOYAmt |
| Mission | To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5. | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $797,339 | ExpenseAmt |
| Grant | $558,849 | GrantAmt |
| Revenue | $0 | RevenueAmt |
| Desc | A number of fundraisers were held in 2018. In addition, contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $558,849 were made during 2018 to fund research that will lead to a cure for this very debilitating disease in the near future. The Organization's goals include aggressive research, studies to improve the quality of life for children with CDKL5, and testing of compounds to identify neurologic modifiers. | Desc |
| Total Program Service Expenses | $797,339 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | false | LobbyingActivitiesInd |
| Subject To Proxy Tax | false | SubjectToProxyTaxInd |
| Donor Advised Fund | false | DonorAdvisedFundInd |
| Conservation Easements | false | ConservationEasementsInd |
| Collections Of Art | false | CollectionsOfArtInd |
| Credit Counseling | false | CreditCounselingInd |
| Temp Or Permanent Endowments | false | TempOrPermanentEndowmentsInd |
| Report Land Building Equipment | false | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | false | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | false | ReportProgramRelatedInvstInd |
| Report Other Assets | false | ReportOtherAssetsInd |
| Report Other Liabilities | false | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | false | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (true) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | false | ConsolidatedAuditFinclStmtInd |
| School Operating | false | SchoolOperatingInd |
| Foreign Office | false | ForeignOfficeInd |
| Foreign Activities | false | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (true) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | false | MoreThan5000KToIndividualsInd |
| Professional Fundraising | false | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (true) | FundraisingActivitiesInd |
| Gaming Activities | false | GamingActivitiesInd |
| Operate Hospital | false | OperateHospitalInd |
| Grants To Organizations | Yes (true) | GrantsToOrganizationsInd |
| Grants To Individuals | false | GrantsToIndividualsInd |
| Schedule J Required | false | ScheduleJRequiredInd |
| Tax Exempt Bonds | false | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | false | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | false | PYExcessBenefitTransInd |
| Loan Outstanding | false | LoanOutstandingInd |
| Grant To Related Person | false | GrantToRelatedPersonInd |
| Business Rln With Org Mem | false | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | false | BusinessRlnWithFamMemInd |
| Business Rln With Officer Ent | false | BusinessRlnWithOfficerEntInd |
| Deductible Non Cash Contri | Yes (true) | DeductibleNonCashContriInd |
| Deductible Art Contribution | false | DeductibleArtContributionInd |
| Terminate Operations | false | TerminateOperationsInd |
| Partial Liquidation | false | PartialLiquidationInd |
| Disregarded Entity | false | DisregardedEntityInd |
| Related Entity | false | RelatedEntityInd |
| Related Organization Ctrl Ent | false | RelatedOrganizationCtrlEntInd |
| Transaction With Control Ent | false | TransactionWithControlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | false | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | false | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (true) | ScheduleORequiredInd |
| IRP Document | 2 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (true) | BackupWthldComplianceInd |
| Employee | 0 | EmployeeCnt |
| Unrelated Bus Incm Over Limit | false | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | false | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | false | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | false | TaxablePartyNotificationInd |
| Nondeductible Contributions | false | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | false | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | false | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | false | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | false | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | false | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | false | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | false | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 10 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 10 | IndependentVotingMemberCnt |
| Family Or Business Rln | false | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | false | DelegationOfMgmtDutiesInd |
| Change To Org Documents | false | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | false | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | false | MembersOrStockholdersInd |
| Election Of Board Members | false | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | false | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (true) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (true) | MinutesOfCommitteesInd |
| Officer Mailing Address | false | OfficerMailingAddressInd |
| Local Chapters | false | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (true) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (true) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (true) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (true) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | false | WhistleblowerPolicyInd |
| Document Retention Policy | false | DocumentRetentionPolicyInd |
| Compensation Process CEO | false | CompensationProcessCEOInd |
| Compensation Process Other | false | CompensationProcessOtherInd |
| Investment In Joint Venture | false | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Amanda Jaksha | PersonNm |
| Phone | 9705762740 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 2228 Podtburg Circle | AddressLine1Txt |
| City | Johnstown | CityNm |
| State Abbreviation | CO | StateAbbreviationCd |
| ZIP | 80534 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| No Listed Persons Compensated | Yes (X) | NoListedPersonsCompensatedInd |
Form990 Part VII Section A Form990PartVIISectionAGrp (10 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|
| Karen Utley | ||||||
| President | 35.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Rick Upp | ||||||
| Vice President | 15.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Megan Strok | ||||||
| Secretary | 15.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Amanda Jaksha | ||||||
| Treasurer | 15.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Miriam Blase | ||||||
| Director | 1.00 | Yes (X) | $0 | $0 | $0 | |
| Kelly Grodzicki | ||||||
| Director | 1.00 | Yes (X) | $0 | $0 | $0 | |
| Paul Miller | ||||||
| Director | 1.00 | Yes (X) | $0 | $0 | $0 | |
| Kristin Kozera | ||||||
| Director | 1.00 | Yes (X) | $0 | $0 | $0 | |
| Garrett Decker | ||||||
| Director | 1.00 | Yes (X) | $0 | $0 | $0 | |
| Melissa Ralston | ||||||
| Board Member Emeritus | 1.00 | Yes (X) | $0 | $0 | $0 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Indiv Rcvd Greater Than100 K | 0 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | false | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | false | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $209,118 | FundraisingAmt |
| All Other Contributions | $207,027 | AllOtherContributionsAmt |
| Noncash Contributions | $59,278 | NoncashContributionsAmt |
| Total Contributions | $416,145 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | Family Conference Income | Desc |
| Business | 611710 | BusinessCd |
| Total Revenue Column | $71,000 | TotalRevenueColumnAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $0 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $71,000 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $4,140 | TotalRevenueColumnAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $4,140 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other | $2,422 | OtherAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other | $1,549 | OtherAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other | $873 | OtherAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $873 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $873 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $0 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $61,058 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $209,118 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $64,013 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$2,955 | TotalRevenueColumnAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$2,955 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | Miscellaneous Revenue | Desc |
| Business | 900099 | BusinessCd |
| Total Revenue Column | $806 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $806 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $806 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $490,009 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $71,873 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $1,991 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part IX | Yes (X) | InfoInScheduleOPartIXInd |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $483,849 | TotalAmt |
| Program Services | $483,849 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $75,000 | TotalAmt |
| Program Services | $75,000 | ProgramServicesAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $80 | TotalAmt |
| Program Services | $80 | ProgramServicesAmt |
| Management And General | $0 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,000 | TotalAmt |
| Program Services | $5,000 | ProgramServicesAmt |
| Management And General | $0 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $74,278 | TotalAmt |
| Program Services | $74,278 | ProgramServicesAmt |
| Management And General | $0 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,842 | TotalAmt |
| Program Services | $3,842 | ProgramServicesAmt |
| Management And General | $0 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $141,821 | TotalAmt |
| Program Services | $141,821 | ProgramServicesAmt |
| Management And General | $0 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,517 | TotalAmt |
| Program Services | $1,485 | ProgramServicesAmt |
| Management And General | $302 | ManagementAndGeneralAmt |
| Fundraising | $730 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| Business Expenses | $339 | $339 | $0 | $0 |
| Business Registration | $135 | $0 | $135 | $0 |
| Bank Charges | $3,915 | $0 | $3,915 | $0 |
| Postage | $2,801 | $2,801 | $0 | $0 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $14,075 | TotalAmt |
| Program Services | $8,844 | ProgramServicesAmt |
| Management And General | $802 | ManagementAndGeneralAmt |
| Fundraising | $4,429 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $807,652 | TotalAmt |
| Program Services | $797,339 | ProgramServicesAmt |
| Management And General | $5,154 | ManagementAndGeneralAmt |
| Fundraising | $5,159 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $314,759 | BOYAmt |
| EOY | $342,486 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $420,128 | BOYAmt |
| EOY | $98,985 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,523 | BOYAmt |
| EOY | $11,662 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $170,451 | BOYAmt |
| EOY | $196,756 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $913,861 | BOYAmt |
| EOY | $649,889 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $29,924 | BOYAmt |
| EOY | $90,508 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $29,924 | BOYAmt |
| EOY | $90,508 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $883,937 | BOYAmt |
| EOY | $559,381 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $883,937 | BOYAmt |
| EOY | $559,381 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $913,861 | BOYAmt |
| EOY | $649,889 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | -$317,643 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | -$6,913 | NetUnrlzdGainsLossesInvstAmt |
| Donated Services And Use Fclts | $236,000 | DonatedServicesAndUseFcltsAmt |
| Other Changes In Net Assets | -$236,000 | OtherChangesInNetAssetsAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | false | AccountantCompileOrReviewInd |
| FS Audited | Yes (true) | 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 (true) | AuditCommitteeInd |
| Federal Grant Audit Required | false | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
| Other Support Sum | $0 | OtherSupportSumAmt |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $734,812 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $294,935 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $406,107 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $323,231 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $416,145 | CurrentTaxYearAmt |
| Total | $2,175,230 | TotalAmt |
Tax Rev Levied Orgnztnl Bnft170 TaxRevLeviedOrgnztnlBnft170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Govt Furn Srvc Fclts Vl170 GovtFurnSrvcFcltsVl170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $734,812 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $294,935 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $406,107 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $323,231 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $416,145 | CurrentTaxYearAmt |
| Total | $2,175,230 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $555,016 | SubstantialContributorsTotAmt |
| Public Support Total170 | $1,620,214 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $3,306 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,699 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $2,695 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $2,879 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $4,140 | CurrentTaxYearAmt |
| Total | $16,719 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $2,619 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | -$3,567 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $6,089 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $2,366 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $72,679 | CurrentTaxYearAmt |
| Total | $80,186 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $2,272,135 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $110,256 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.71310 | PublicSupportCY170Pct |
| Public Support PY170 | 0.73660 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
| Public Support Total509 | $0 | PublicSupportTotal509Amt |
| Public Support CY509 | 0 | PublicSupportCY509Pct |
| Investment Income CY | 0 | InvestmentIncomeCYPct |
Form990 Schedule A Part VI Form990ScheduleAPartVIGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Pt II Ln 10 | FormAndLineReferenceDesc |
| Explanation | Other Income Part II, Line 10 Description: Sales of Merchandise 2014: 6594. 2015: 3282. 2016: 7054. 2017: 3046. 2018: 2422. Description: Cost of Goods Sold 2014: -3975. 2015: -6849. 2016: -965. 2017: -680. 2018: -1549. Description: Miscellaneous Revenue 2018: 806. Description: Family Conference Income 2018: 71000. | 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 D IRS990ScheduleD
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Rev Etc Audited Fincl Stmt | $783,109 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | -$6,913 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $236,000 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $229,087 | RevenueNotReportedAmt |
| Revenue Subtotal | $554,022 | RevenueSubtotalAmt |
| Other Revenues Not Included | -$64,013 | OtherRevenuesNotIncludedAmt |
| Revenue Not Reported Fincl Stmt | -$64,013 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $490,009 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $1,107,665 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $236,000 | DonatedServicesUseFcltsAmt |
| Other Expenses Included | $64,013 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $300,013 | ExpensesNotReportedAmt |
| Expenses Subtotal | $807,652 | ExpensesSubtotalAmt |
| Total Expenses Per Form990 | $807,652 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Pt XI, Line 4b | Fundraising Expenses $64,013 |
| Pt XII, Line 2d | Fundraising Expenses $64,013 |
Schedule F IRS990ScheduleF
Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|---|
| East Asia and Pacific | Research | $25,000 | Check |
| East Asia and Pacific | Research | $50,000 | Check |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 2 | Total501c3OrgCnt |
| Transfer To Foreign Corp | false | TransferToForeignCorpInd |
| Interest In Foreign Trust | false | InterestInForeignTrustInd |
| Foreign Corp Ownership | false | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | false | PassiveForeignInvestmestCoInd |
| Foreign Partnership | false | ForeignPartnershipInd |
| Boycott Countries | false | BoycottCountriesInd |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | Sands | Event1Nm |
| Gross Receipts Event1 | $55,338 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $48,813 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $6,525 | GrossRevenueEvent1Amt |
| Other Direct Expenses Event1 | $6,525 | OtherDirectExpensesEvent1Amt |
| Event2 | Toast For Cure | Event2Nm |
| Gross Receipts Event2 | $91,040 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $44,160 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $46,880 | GrossRevenueEvent2Amt |
| Other Direct Expenses Event2 | $46,880 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 4 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $120,598 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $112,945 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $7,653 | GrossRevenueOtherEventsAmt |
| Oth Direct Expnss Other Events | $7,653 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $266,976 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $205,918 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $61,058 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $61,058 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $61,058 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $0 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (7 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Valuation Method UsedValuationMethodUsedDesc | Non Cash AssistanceNonCashAssistanceDesc | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|---|---|---|
| Regents Univ of CA | ||||||||||
| 1855 Folsom St | San Francisco | CA | 94143 | 943067788 | 501 (c) (3) | $25,000 | $0 | N/A | N/A | Research |
| University of Pennsylvania | ||||||||||
| 3451 Walnut St | Philadelphia | PA | 19104 | 231352685 | 501 (c) (3) | $190,070 | $0 | N/A | N/A | Research |
| University of Nebraska | ||||||||||
| 2200 Vine Street | Lincoln | NE | 68583 | 470049123 | 501 (c) (3) | $45,000 | $0 | N/A | N/A | Research |
| University of Colorado | ||||||||||
| 1800 Grant Street Suite 500 | Denver | CO | 80203 | 846000555 | 501 (c) (3) | $76,279 | $0 | N/A | N/A | Research |
| NYU School of Medicine | ||||||||||
| 550 First Avenue | New York | NY | 10016 | 472613531 | 501 (c) (3) | $60,000 | $0 | N/A | N/A | Research |
| Boston Children's Hospital | ||||||||||
| 1295 Boylstyon Street | Boston | MA | 02215 | 530196580 | 501 (c) (3) | $67,500 | $0 | N/A | N/A | Research |
| Washington University School of Medicine | ||||||||||
| 660 S Euclid Avenue | Saint Louis | MO | 63110 | 430653611 | 501 (c) (3) | $20,000 | $0 | N/A | N/A | Research |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 7 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Pt I Line 2 | A group of officers monitors how these funds are being used on a |
| Pt I Line 2 | frequent basis. |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 2 | ContributionCnt |
| Noncash Contributions Rpt F990 | $29,512 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | Fair Market Value | MethodOfDeterminingRevenuesTxt |
Other Non Cash Contri Table OtherNonCashContriTableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Desc | Goods For Fundraisers | Desc |
| Contribution | 45 | ContributionCnt |
| Noncash Contributions Rpt F990 | $29,766 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | Retail Value | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | false | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | Yes (true) | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | false | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (16 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Pt VI, Line 11b | The form is reviewed by the Board Treasurer and other |
| Pt VI, Line 11b | members of the Board. All questions are reviewed to make |
| Pt VI, Line 11b | certain that there are no incorrect answers. |
| Pt VI, Line 12c | Questionnaires are required to be completed by all |
| Pt VI, Line 12c | Board members annually. Should there be reasons for |
| Pt VI, Line 12c | concern, there is a detailed review of all |
| Pt VI, Line 12c | transactions that appear to be a cause for concern. |
| Pt VI, Line 19 | Upon request, they are provided to grantors, contributors, |
| Pt VI, Line 19 | and Board members. |
| Pt XI | Value of Volunteer Services $236,000 |
| Form 990, Part IX, Line 24e | Donor Management 9191. 4228. 735. 4228. |
| Form 990, Part IX, Line 24e | Family Support 2099. 2099. 0. 0. |
| Form 990, Part IX, Line 24e | Memberships & Dues 1084. 1084. 0. 0. |
| Form 990, Part IX, Line 24e | Printing 199. 199. 0. 0. |
| Form 990, Part IX, Line 24e | Telephone 670. 402. 67. 201. |
| Form 990, Part IX, Line 24e | Volunteer Expenses 832. 832. 0. 0. |