STXBP1 FOUNDATION: Form 990, tax year 2023
View the entire original 990 at ProPublica ↗
- Organization
- STXBP1 FOUNDATION (EIN 82-1439459)
- Tax period
- 2023-01-01 to 2023-12-31
- Filed
- 2024-10-10
- IRS object ID
- 202432849349301718
- Schema version
- 2023v5.1
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2024-10-10T15:31:38-05:00 | ReturnTs |
| Tax Period End | 2023-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 232108173 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RKL LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 102 PICKERING WAY STE 300 | AddressLine1Txt |
| City | EXTON | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19341 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2023-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 821439459 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | STXBP1 FOUNDATION | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | STXB | BusinessNameControlTxt |
| Phone | 5137206302 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 1148 | AddressLine1Txt |
| City | HOLLY SPRINGS | CityNm |
| State Abbreviation | NC | StateAbbreviationCd |
| ZIP | 27540 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | HEATHER JONES | PersonNm |
| Person Title | TREASURER | PersonTitleTxt |
| Phone | 5137206302 | PhoneNum |
| Signature | 2024-10-01 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IRS Responsible Prty Info Curr | 0 | IRSResponsiblePrtyInfoCurrInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | STEPHANIE E KANE CPA | PreparerPersonNm |
| PTIN | P01275157 | PTIN |
| Phone | 4848742200 | PhoneNum |
| Preparation | 2024-09-30 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2023 | TaxYr |
| Build TS | 2024-10-15 13:58:12Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | CHARLENE SON RIGBY | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 1148 | AddressLine1Txt |
| City | HOLLY SPRINGS | CityNm |
| State Abbreviation | NC | StateAbbreviationCd |
| ZIP | 27540 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $739,539 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.STXBP1DISORDERS.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2017 | FormationYr |
| Legal Domicile State | PA | LegalDomicileStateCd |
| Activity Or Mission | TO CREATE AWARENESS IN THE DISORDERS ASSOCIATED WITH STXBP1 MUTATIONS. FUND AND DRIVE RESEARCH DISCOVERY OF A CURE. PROVIDE FAMILIES WITH TOOLS TO HELP THEM UNDERSTAND THE DISEASE & HOW TO GET INVOLVED. ADVOCATE TO IMPROVE EARLY DETECTION. FOSTER ACTIVISM TO HELP CHANGE POLICIES IN FAVOR OF ORPHANED DISEASES. IMPROVE THE LIVES OF OUR STXBP1 FAMILIES. | ActivityOrMissionDesc |
| Voting Members Governing Body | 8 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 8 | VotingMembersIndependentCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Total Volunteers | 30 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $1,830,890 | PYContributionsGrantsAmt |
| CY Contributions Grants | $694,492 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $0 | PYInvestmentIncomeAmt |
| CY Investment Income | $41,035 | CYInvestmentIncomeAmt |
| PY Other Revenue | $0 | PYOtherRevenueAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $1,830,890 | PYTotalRevenueAmt |
| CY Total Revenue | $735,527 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $130,333 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $385,588 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $0 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $0 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $5,798 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $378,883 | PYOtherExpensesAmt |
| CY Other Expenses | $938,271 | CYOtherExpensesAmt |
| PY Total Expenses | $509,216 | PYTotalExpensesAmt |
| CY Total Expenses | $1,323,859 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $1,321,674 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$588,332 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $1,701,392 | TotalAssetsBOYAmt |
| Total Assets EOY | $1,367,619 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $99,962 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $354,521 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $1,601,430 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $1,013,098 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | TO CREATE AWARENESS IN THE DISORDERS ASSOCIATED WITH STXBP1 MUTATIONS. FUND AND DRIVE RESEARCH DISCOVERY OF A CURE. PROVIDE FAMILIES WITH TOOLS TO HELP THEM UNDERSTAND THE DISEASE & HOW TO GET INVOLVED. ADVOCATE TO IMPROVE EARLY DETECTION. FOSTER ACTIVISM TO HELP CHANGE POLICIES IN FAVOR OF ORPHANED DISEASES. IMPROVE THE LIVES OF OUR STXBP1 FAMILIES. | MissionDesc |
| Significant New Program Srvc | Yes (1) | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $362,118 | ExpenseAmt |
| Grant | $385,588 | GrantAmt |
| Revenue | $494,159 | RevenueAmt |
| Desc | FUNDED MULTIPLE PRECLINICAL GRANTS TO VARIOUS ORGANIZATIONS TO FURTHER RESEARCH AROUND STXBP1 | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $141,730 | ExpenseAmt |
| Desc | HOSTED IN PERSON STXBP1 SUMMIT+ TO UPDATE FAMILIES ON CURRENT RESEARCH AS WELL AS PROVIDE ADDITIONAL RESOURCES TO BE USED IN EVERYDAY LIFE | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $749,842 | ExpenseAmt |
| Revenue | $0 | RevenueAmt |
| Desc | LAUNCHED A LONGITUDINAL MULTI SITE NATURAL HISTORY STUDY FOR PATIENTS. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $1,253,690 | 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 | 0 | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | 0 | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 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 | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | 0 | 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 | 0 | 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 |
| Info In Schedule O Part V | Yes (X) | InfoInScheduleOPartVInd |
| IRP Document | 0 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 0 | EmployeeCnt |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | 0 | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| 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 | 8 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 8 | 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 | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | 0 | WhistleblowerPolicyInd |
| Document Retention Policy | 0 | DocumentRetentionPolicyInd |
| Compensation Process CEO | 0 | CompensationProcessCEOInd |
| Compensation Process Other | 0 | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | HEATHER JONES | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 5137206302 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 308 VICTORY FALLS DRIVE | AddressLine1Txt |
| City | APEX | CityNm |
| State Abbreviation | NC | StateAbbreviationCd |
| ZIP | 27539 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| No Listed Persons Compensated | Yes (X) | NoListedPersonsCompensatedInd |
Form990 Part VII Section A Form990PartVIISectionAGrp (9 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|
| CHARLENE SON RIGBY | ||||||
| PRESIDENT | 30.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| MELISSA HIOCO | ||||||
| DIRECTOR, DEVELOPMENT | 30.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| JACQUELINE STEINBERG | ||||||
| VICE PRESIDENT & SCIENTIFI | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| HEATHER JONES | ||||||
| TREASURER | 15.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| JENNIFER CLATTERBUCK | ||||||
| DIRECTOR, COMMUNITY ENGAGE | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| RUSS NOVY | ||||||
| DIRECTOR, MARKETING & BRAN | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| CRISTINA BRENNAN | ||||||
| SECRETARY | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| JARED BARNUM | ||||||
| DIRECTOR, TECHNOLOGY | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| DANIELE GREINER | ||||||
| DIRECTOR, DEVELOPMENT | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $0 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $0 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 0 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | 0 | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp
Contractor Name ContractorName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | JAMES GOSS | PersonNm |
Contractor Address ContractorAddress
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1521 NETWORK DRIVE | AddressLine1Txt |
| City | CANONSBURG | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 15317 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Services | SCIENTIFIC CONSULTING | ServicesDesc |
| Compensation | $165,000 | CompensationAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 1 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $47,044 | FundraisingAmt |
| All Other Contributions | $647,448 | AllOtherContributionsAmt |
| Total Contributions | $694,492 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $41,035 | TotalRevenueColumnAmt |
| Exclusion | $41,035 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $4,012 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $47,044 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $4,012 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $735,527 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $41,035 | 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 | $385,588 | TotalAmt |
| Program Services | $385,588 | ProgramServicesAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $38,715 | TotalAmt |
| Management And General | $38,715 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,655 | TotalAmt |
| Management And General | $9,655 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $716,925 | TotalAmt |
| Program Services | $716,925 | ProgramServicesAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,538 | TotalAmt |
| Fundraising | $5,538 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $414 | TotalAmt |
| Management And General | $414 | ManagementAndGeneralAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,034 | TotalAmt |
| Management And General | $4,034 | ManagementAndGeneralAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $151,177 | TotalAmt |
| Program Services | $151,177 | ProgramServicesAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|
| BANK FEES | $7,305 | $7,305 | |
| PROFESSIONAL ORGANIZATI | $2,116 | $2,116 | |
| MISCELLANEOUS | $1,914 | $1,914 | |
| COMPLIANCE FEES | $478 | $218 | $260 |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,323,859 | TotalAmt |
| Program Services | $1,253,690 | ProgramServicesAmt |
| Management And General | $64,371 | ManagementAndGeneralAmt |
| Fundraising | $5,798 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,648,170 | BOYAmt |
| EOY | $1,337,910 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $44,232 | BOYAmt |
| EOY | $26,405 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,990 | BOYAmt |
| EOY | $3,304 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,701,392 | BOYAmt |
| EOY | $1,367,619 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $99,962 | BOYAmt |
| EOY | $349,521 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $5,000 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $99,962 | BOYAmt |
| EOY | $354,521 | 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 | $1,601,430 | BOYAmt |
| EOY | $1,013,098 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,601,430 | BOYAmt |
| EOY | $1,013,098 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,701,392 | BOYAmt |
| EOY | $1,367,619 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$588,332 | 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 | $112,356 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $300,412 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $587,683 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,830,890 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $518,159 | CurrentTaxYearAmt |
| Total | $3,349,500 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $112,356 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $300,412 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $587,683 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,830,890 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $518,159 | CurrentTaxYearAmt |
| Total | $3,349,500 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $499,580 | SubstantialContributorsTotAmt |
| Public Support Total170 | $2,849,920 | PublicSupportTotal170Amt |
| Total Support | $3,349,500 | TotalSupportAmt |
| Public Support CY170 | 0.85080 | PublicSupportCY170Pct |
| Public Support PY170 | 0.85080 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule D IRS990ScheduleD
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $0 | TotalBookValueLandBuildingsAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $763,539 | TotalRevEtcAuditedFinclStmtAmt |
| Donated Services And Use Fclts | $24,000 | DonatedServicesAndUseFcltsAmt |
| Other Revenue | $4,012 | OtherRevenueAmt |
| Revenue Not Reported | $28,012 | RevenueNotReportedAmt |
| Revenue Subtotal | $735,527 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $735,527 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $1,351,871 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $24,000 | DonatedServicesUseFcltsAmt |
| Other Expenses Included | $4,012 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $28,012 | ExpensesNotReportedAmt |
| Expenses Subtotal | $1,323,859 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $1,323,859 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART X, LINE 2: | THE ORGANIZATION IS EXEMPT FROM FEDERAL AND STATE INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AND THEREFORE HAS MADE NO PROVISION FOR INCOME TAXES IN THE ACCOMPANYING FINANCIAL STATEMENTS. THE ORGANIZATION HAS ANALYZED TAX POSITIONS TAKEN FOR FILING WITH THE INTERNAL REVENUE SERVICE AND THE STATE JURISDICTIONS FOR WHICH IT HAS NEXUS. THE ORGANIZATION BELIEVES THAT INCOME TAX FILING POSITIONS WILL BE SUSTAINED UPON EXAMINATION AND DOES NOT ANTICIPATE ANY ADJUSTMENTS THAT WOULD RESULT IN A MATERIAL ADVERSE EFFECT ON THE ORGANIZATION'S FINANCIAL CONDITION, RESULTS OF OPERATIONS OR CASH FLOWS. ACCORDINGLY, THE ORGANIZATION HAS NOT RECORDED ANY RESERVES, OR RELATED ACCRUALS FOR INTEREST AND PENALTIES FOR UNCERTAIN INCOME TAX POSITIONS AT DECEMBER 31, 2022. THE ORGANIZATION IS SUBJECT TO ROUTINE AUDITS BY TAXING JURISDICTIONS; HOWEVER, THERE ARE CURRENTLY NO AUDITS FOR ANY TAX PERIODS IN PROGRESS. |
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | FUNDRAISER EXPENSES 4,012. |
| PART XII, LINE 2D - OTHER ADJUSTMENTS: | FUNDRAISER EXPENSES 4,012. |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | 0 | GrantRecordsMaintainedInd |
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $0 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $0 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | VUMC | RegionTxt |
| Purpose Of Grant | TO FUND NATURAL HISTORY STUDY | PurposeOfGrantTxt |
| Cash Grant | $167,413 | CashGrantAmt |
| Non Cash Assistance | $0 | NonCashAssistanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Org | 1 | TotalOtherOrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | 5K RACES | Event1Nm |
| Gross Receipts Event1 | $51,056 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $47,044 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $4,012 | GrossRevenueEvent1Amt |
| Cash Prizes Event1 | $0 | CashPrizesEvent1Amt |
| Non Cash Prizes Event1 | $3,618 | NonCashPrizesEvent1Amt |
| Rent Facility Costs Event1 | $65 | RentFacilityCostsEvent1Amt |
| Other Direct Expenses Event1 | $329 | OtherDirectExpensesEvent1Amt |
| Gross Receipts Total | $51,056 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $47,044 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $4,012 | GrossRevenueTotalEventsAmt |
| Non Cash Prizes Total Events | $3,618 | NonCashPrizesTotalEventsAmt |
| Rent Fclty Costs Total Events | $65 | RentFcltyCostsTotalEventsAmt |
| Oth Direct Expnss Total Events | $329 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $4,012 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $0 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | 0 | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (6 entries)
| Address Line1USAddress/AddressLine1Txt | Address Line2USAddress/AddressLine2Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|---|---|
| UNIVERSITY OF PENNSYLVANIA - HELLER LAB | |||||||||
| 3400 CIVIC CENTER BOULEVARD | BUILDING 421 | PHILADELPHIA | PA | 191045158 | 231352685 | 501(C)(3) | $38,688 | $0 | TO FUND RESEARCH |
| CHILDREN'S HOSPITAL OF PHILADELPHIA | |||||||||
| 3401 CIVIC CENTER BOULEVARD | PHILADELPHIA | PA | 19104 | 231352166 | 501(C)(3) | $50,000 | $0 | TO FUND RESEARCH | |
| WEILL CORNELL MEDICINE | |||||||||
| 1300 YORK AVENUE | NEW YORK | NY | 10065 | 136094042 | 501(C)(3) | $82,500 | $0 | TO FUND CLINICAL TRIAL | |
| CHILDREN'S HOSPITAL COLORADO | |||||||||
| 13123 E 16TH AVE | AURORA | CO | 80045 | 454182666 | 501(C)(3) | $104,399 | $0 | TO FUND RESEARCH | |
| UPLIIFTING ATHLETES | |||||||||
| 8 ATKINSON DRIVE UNIT 574 | DOYLESTOWN | PA | 18901 | 341986485 | 501(C)(3) | $10,000 | $0 | TO FUND RESEARCH | |
| BAYLOR COLLEGE OF MEDICINE | |||||||||
| ONE BAYLOR PLAZA | HOUSTON | TX | 77030 | 741613878 | 501(C)(3) | $100,000 | $0 | TO FUND RESEARCH | |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (7 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART III, LINE 2 | THE FOUNDATION LAUNCHED A LONGITUDINAL MULTI SITE NATURAL HISTORY STUDY FOR PATIENTS. THE FOUNDATION ALSO FUNDED MULTIPLE PRECLINICAL GRANTS TO VARIOUS ORGANIZATIONS TO FURTHER RESEARCH AROUND STXBP1. FUTHERMORE, THE FOUNDATION HOSTED AN IN PERSON STXBP1 SUMMIT+ TO UPDATE FAMILIES ON CURRENT RESEARCH, AS WELL AS PROVIDE ADDITIONAL RESOURCES TO BE USED IN EVERYDAY LIFE. |
| FORM 990, PART V, LINE 1C: | THE ORGANIZATION DID NOT HAVE ANY INSTANCES WHERE BACKUP WITHHOLDING WAS REQUIRED; HOWEVER, IF THE SITUATION WOULD ARISE, THE ORGANIZATION IS AWARE OF THE REPORTING REQUIREMENTS AND WOULD HANDLE THAT ACCORDINGLY. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE FORM 990 IS REVIEWED BY THE TREASURER AND PRESIDENT PRIOR TO SUBMISSION TO THE IRS. |
| FORM 990, PART VI, SECTION B, LINE 12C | EACH DIRECTOR, PRINCIPAL OFFICER AND MEMBER OF A COMMITTEE WITH GOVERNING BOARD DELEGATED POWERS SHALL ANNUALLY SIGN A STATEMENT WHICH AFFIRMS SUCH PERSON HAS RECEIVED A COPY OF THE POLICY, READ AND UNDERSTANDS THE POLICY, AGREES TO COMPLY, AND UNDERSTANDS THAT THE CORPORATION MUST ENGAGE PRIMARILY IN ACTIVITIES WHICH ACCOMPLISH ONE OR MORE OF ITS TAX-EXEMPT PURPOSES TO MAINTAIN ITS FEDERAL TAX EXEMPTION. TO ENSURE THE CORPORATION OPERATES IN A MANNER CONSISTENT WITH CHARITABLE PURPOSES AND DOES NOT ENGAGE IN ACTIVITIES THAT COULD JEOPARDIZE ITS TAX-EXEMPT STATUS, PERIODIC REVIEWS SHALL BE CONDUCTED. |
| FORM 990, PART VI, SECTION C, LINE 19 | YES, THE ORGANIZATION'S OWN WEBSITE. |
| FORM 990, PART IX, LINE 11G | OTHER RESEARCH COSTS: PROGRAM SERVICE EXPENSES 716,925. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 716,925. |
| PART XII, LINE 2C | FINANCE COMMITEE; NO CHANGE |