INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH: Form 990, tax year 2024
View the entire original 990 at ProPublica ↗
- Organization
- INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH (EIN 27-0950477)
- Tax period
- 2024-01-01 to 2024-12-31
- Filed
- 2025-10-19
- IRS object ID
- 202542929349300054
- Schema version
- 2024v5.2
- 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 ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2025-10-19T11:12:56-07:00 | ReturnTs |
| Tax Period End | 2024-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 824912386 | PreparerFirmEIN |
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 | 2024-01-01 | 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 | 9792653411 | 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 | Karen Utley | PersonNm |
| Person Title | President | PersonTitleTxt |
| Phone | 9792653411 | PhoneNum |
| Signature | 2025-10-16 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IRS Responsible Prty Info Curr | Yes (true) | IRSResponsiblePrtyInfoCurrInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | Judy L Arfa CPA | PreparerPersonNm |
| PTIN | P01070261 | PTIN |
| Phone | 7132403315 | PhoneNum |
| Preparation | 2025-10-19 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2024 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | Karen Utley | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 325 Brazoswood | AddressLine1Txt |
| City | Clute | CityNm |
| State Abbreviation | TX | StateAbbreviationCd |
| ZIP | 77531 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $718,028 | 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 | 8 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 8 | VotingMembersIndependentCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Total Volunteers | 12 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $630,788 | PYContributionsGrantsAmt |
| CY Contributions Grants | $712,663 | CYContributionsGrantsAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $3,044 | PYInvestmentIncomeAmt |
| CY Investment Income | $3,677 | CYInvestmentIncomeAmt |
| PY Other Revenue | $5,350 | PYOtherRevenueAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $639,182 | PYTotalRevenueAmt |
| CY Total Revenue | $716,340 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $197,884 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $120,515 | 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 | $3,341 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $216,714 | PYOtherExpensesAmt |
| CY Other Expenses | $236,496 | CYOtherExpensesAmt |
| PY Total Expenses | $414,598 | PYTotalExpensesAmt |
| CY Total Expenses | $357,011 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $224,584 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $359,329 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $761,142 | TotalAssetsBOYAmt |
| Total Assets EOY | $976,798 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $196,191 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $12,536 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $564,951 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $964,262 | 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 | $313,492 | ExpenseAmt |
| Grant | $120,515 | GrantAmt |
| Revenue | $0 | RevenueAmt |
| Desc | In 2024, cash and noncash contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $120,515 were made during 2024 to fund research that will lead to a cure for this very debilitating disease in the near future. The Organizations 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 | $313,492 | 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 |
| Donor Rstr Or Quasi Endowments | false | DonorRstrOrQuasiEndowmentsInd |
| 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 | false | 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 With35 Ctrl Ent | false | BusinessRlnWith35CtrlEntInd |
| 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 | 3 | 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 | 8 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 8 | 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 | Yes (true) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (true) | DocumentRetentionPolicyInd |
| Compensation Process CEO | false | CompensationProcessCEOInd |
| Compensation Process Other | false | CompensationProcessOtherInd |
| Investment In Joint Venture | false | InvestmentInJointVentureInd |
| Own Website | Yes (X) | OwnWebsiteInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Karen Utley | PersonNm |
| Phone | 9792653411 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 325 Brazoswood | AddressLine1Txt |
| City | Clute | CityNm |
| State Abbreviation | TX | StateAbbreviationCd |
| ZIP | 77531 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| No Listed Persons Compensated | Yes (X) | NoListedPersonsCompensatedInd |
Form990 Part VII Section A Form990PartVIISectionAGrp (8 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 |
| Paul Miller | ||||||
| Secretary | 15.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Amanda Jaksha | ||||||
| Treasurer | 15.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Miriam Churgin | ||||||
| Director | 1.00 | Yes (X) | $0 | $0 | $0 | |
| Garrett Decker | ||||||
| Director | 1.00 | Yes (X) | $0 | $0 | $0 | |
| Marissa Bishop | ||||||
| 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 | $54,704 | FundraisingAmt |
| All Other Contributions | $657,959 | AllOtherContributionsAmt |
| Noncash Contributions | $42,544 | NoncashContributionsAmt |
| Total Contributions | $712,663 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $3,677 | TotalRevenueColumnAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $3,677 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $1,688 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $54,704 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $1,688 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $0 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $716,340 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $3,677 | 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 | $120,515 | TotalAmt |
| Program Services | $120,515 | ProgramServicesAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,624 | TotalAmt |
| Program Services | $0 | ProgramServicesAmt |
| Management And General | $1,624 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $56,666 | TotalAmt |
| Program Services | $50,999 | ProgramServicesAmt |
| Management And General | $5,667 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $336 | TotalAmt |
| Program Services | $0 | ProgramServicesAmt |
| Management And General | $302 | ManagementAndGeneralAmt |
| Fundraising | $34 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,625 | TotalAmt |
| Program Services | $0 | ProgramServicesAmt |
| Management And General | $1,625 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,170 | TotalAmt |
| Program Services | $1,170 | ProgramServicesAmt |
| Management And General | $0 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,334 | TotalAmt |
| Program Services | $3,667 | ProgramServicesAmt |
| Management And General | $3,667 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,942 | TotalAmt |
| Program Services | $0 | ProgramServicesAmt |
| Management And General | $2,942 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Other Expenses OtherExpensesGrp (2 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| Business Registration | $8,044 | $0 | $8,044 | $0 |
| Bank Charges | $7,392 | $0 | $7,392 | $0 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $149,363 | TotalAmt |
| Program Services | $137,141 | ProgramServicesAmt |
| Management And General | $8,915 | ManagementAndGeneralAmt |
| Fundraising | $3,307 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $357,011 | TotalAmt |
| Program Services | $313,492 | ProgramServicesAmt |
| Management And General | $40,178 | ManagementAndGeneralAmt |
| Fundraising | $3,341 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $284,614 | BOYAmt |
| EOY | $387,550 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $289,364 | BOYAmt |
| EOY | $328,288 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,399 | BOYAmt |
| EOY | $4,618 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $165,432 | BOYAmt |
| EOY | $245,342 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $18,333 | BOYAmt |
| EOY | $11,000 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $761,142 | BOYAmt |
| EOY | $976,798 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,432 | BOYAmt |
| EOY | $7,200 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $194,759 | BOYAmt |
| EOY | $5,336 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $196,191 | BOYAmt |
| EOY | $12,536 | 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 | $564,951 | BOYAmt |
| EOY | $964,262 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $564,951 | BOYAmt |
| EOY | $964,262 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $761,142 | BOYAmt |
| EOY | $976,798 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $359,329 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $35,588 | NetUnrlzdGainsLossesInvstAmt |
| Prior Period Adjustments | $4,394 | PriorPeriodAdjustmentsAmt |
| 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 | $505,914 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $668,072 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $606,015 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $630,788 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $712,663 | CurrentTaxYearAmt |
| Total | $3,123,452 | 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 | $505,914 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $668,072 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $606,015 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $630,788 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $712,663 | CurrentTaxYearAmt |
| Total | $3,123,452 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $506,997 | SubstantialContributorsTotAmt |
| Public Support Total170 | $2,616,455 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $931 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $13 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $574 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,044 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $3,677 | CurrentTaxYearAmt |
| Total | $8,239 | 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 | $128,489 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $9,962 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus1 Year | $5,350 | CurrentTaxYearMinus1YearAmt |
| Total | $143,801 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $3,275,492 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $92,500 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.79880 | PublicSupportCY170Pct |
| Public Support PY170 | 0.78480 | 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 Description: Cost of Goods Sold Description: Miscellaneous Revenue 2023: 5350. Description: Family Conference Income 2020: 92500. Description: Refunds 2020: 35989. 2021: 9962. | 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 | $753,616 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $35,588 | NetUnrealizedGainsInvstAmt |
| Revenue Not Reported | $35,588 | RevenueNotReportedAmt |
| Revenue Subtotal | $718,028 | RevenueSubtotalAmt |
| Other Revenues Not Included | -$1,688 | OtherRevenuesNotIncludedAmt |
| Revenue Not Reported Fincl Stmt | -$1,688 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $716,340 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $358,701 | TotExpnsEtcAuditedFinclStmtAmt |
| Other Expenses Included | $1,688 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $1,688 | ExpensesNotReportedAmt |
| Expenses Subtotal | $357,013 | ExpensesSubtotalAmt |
| Other Expenses Not Included | -$2 | OtherExpensesNotIncludedAmt |
| Expenses Not Rpt Fincl Stmt | -$2 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $357,011 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Pt XI, Line 4b | Fundraising Expenses $1,688 |
| Pt XII, Line 2d | Fundraising Expenses $1,688 |
| Pt XII, Line 4b | Rounding -$2 |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | Toasting Tanner | Event1Nm |
| Gross Receipts Event1 | $17,457 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $15,769 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $1,688 | GrossRevenueEvent1Amt |
| Other Direct Expenses Event1 | $1,688 | OtherDirectExpensesEvent1Amt |
| Event2 | Vivis Drive | Event2Nm |
| Gross Receipts Event2 | $27,330 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $27,330 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $0 | GrossRevenueEvent2Amt |
| Other Direct Expenses Event2 | $0 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 1 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $11,605 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $11,605 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $0 | GrossRevenueOtherEventsAmt |
| Gross Receipts Total | $56,392 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $54,704 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $1,688 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $1,688 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $1,688 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $0 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (4 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 |
|---|---|---|---|---|---|---|---|---|---|---|
| Children's Hospital Philadelphia | ||||||||||
| 3401 Civic Center Blvd | Philadelphia | PA | 19104 | 231352166 | 501 (c) (3) | $50,000 | $0 | N/A | N/A | Research |
| Washington University School of Medicine | ||||||||||
| 660 S Euclid Avenue | Saint Louis | MO | 63110 | 430653611 | 501 (c) (3) | $30,000 | $0 | N/A | N/A | Research |
| University of Oregon | ||||||||||
| 1585 E 13th Avenue | Eugene | OR | 97403 | 936015767 | 501 (c) (3) | $55,874 | $0 | N/A | N/A | Research |
| Orphan Disease Center at University of Pennsylvania | ||||||||||
| 125 South 31st Street | Philadelphia | PA | 19104 | 231352685 | 501 (c) (3) | $13,400 | $0 | N/A | N/A | Research |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 5 | 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 | $42,544 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | Fair Market 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 (15 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. |
| Form 990, Part IX, Line 24e | Donor Management 17539. 12277. 4385. 877. |
| Form 990, Part IX, Line 24e | Family Conference 95197. 95197. 0. 0. |
| Form 990, Part IX, Line 24e | Family Support 29667. 29667. 0. 0. |
| Form 990, Part IX, Line 24e | Gifts 1685. 0. 0. 1685. |
| Form 990, Part IX, Line 24e | Printing 2980. 0. 2235. 745. |
| Form 990, Part IX, Line 24e | Supplies 2295. 0. 2295. 0. |