CITIZENS UNITED FOR RESEARCH IN EPILEPSY: Form 990, tax year 2024

View the entire original 990 at ProPublica ↗

Organization
CITIZENS UNITED FOR RESEARCH IN EPILEPSY (EIN 36-4253176)
Tax period
2024-01-01 to 2024-12-31
Filed
2025-04-23
IRS object ID
202501139349301570
Schema version
2024v5.1
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

FieldValueIRS element (for citing)
Return2025-04-23T04:10:59-00:00ReturnTs
Tax Period End2024-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN363614997PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1EccezionBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line15400 W Elm Street Suite 203AddressLine1Txt
CityMcHenryCityNm
State AbbreviationILStateAbbreviationCd
ZIP60050ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2024-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN364253176EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1Citizens United for Research in EpilepsyBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlCITIBusinessNameControlTxt
Phone3122551801PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1420 N Wabash Ave STE 650AddressLine1Txt
CityChicagoCityNm
State AbbreviationILStateAbbreviationCd
ZIP60611ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonBeth DeanPersonNm
Person TitleCEOPersonTitleTxt
Phone3122551801PhoneNum
Signature2025-04-23SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonCheryden JuergensenPreparerPersonNm
PTINP01252676PTIN
Phone8153441300PhoneNum
Preparation2025-04-23PreparationDt
FieldValueIRS element (for citing)
Tax2024TaxYr
Build TS2025-03-06 01:10:19ZBuildTS

Form 990 IRS990

Doing Business As Name DoingBusinessAsName

FieldValueIRS element (for citing)
Business Name Line1CURE EpilepsyBusinessNameLine1Txt
FieldValueIRS element (for citing)
Principal OfficerBeth DeanPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1420 N Wabash Ave STE 650AddressLine1Txt
CityChicagoCityNm
State AbbreviationILStateAbbreviationCd
ZIP60611ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$7,755,545GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website Addresswww.cureepilepsy.orgWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1998FormationYr
Legal Domicile StateILLegalDomicileStateCd
Activity Or MissionTo find a cure for epilepsy by promoting and funding patient focused research.ActivityOrMissionDesc
Voting Members Governing Body16VotingMembersGoverningBodyCnt
Voting Members Independent16VotingMembersIndependentCnt
Total Employee22TotalEmployeeCnt
Total Volunteers285TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$6,403,752PYContributionsGrantsAmt
CY Contributions Grants$6,067,462CYContributionsGrantsAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$355,902PYInvestmentIncomeAmt
CY Investment Income$492,012CYInvestmentIncomeAmt
PY Other Revenue-$576,491PYOtherRevenueAmt
CY Other Revenue-$508,827CYOtherRevenueAmt
PY Total Revenue$6,183,163PYTotalRevenueAmt
CY Total Revenue$6,050,647CYTotalRevenueAmt
PY Grants And Similar Paid$2,759,409PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$2,900,590CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$2,243,543PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$2,236,039CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$679,997CYTotalFundraisingExpenseAmt
PY Other Expenses$990,398PYOtherExpensesAmt
CY Other Expenses$1,059,980CYOtherExpensesAmt
PY Total Expenses$5,993,350PYTotalExpensesAmt
CY Total Expenses$6,196,609CYTotalExpensesAmt
PY Revenues Less Expenses$189,813PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$145,962CYRevenuesLessExpensesAmt
Total Assets BOY$10,587,072TotalAssetsBOYAmt
Total Assets EOY$10,689,964TotalAssetsEOYAmt
Total Liabilities BOY$3,627,120TotalLiabilitiesBOYAmt
Total Liabilities EOY$3,693,856TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$6,959,952NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$6,996,108NetAssetsOrFundBalancesEOYAmt
MissionTo find a cure for epilepsy by promoting and funding patient focused research.MissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$4,091,235ExpenseAmt
DescSince its inception in 1998, CURE Epilepsy has raised more than 99 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE Epilepsy awards grants for novel research projects to prevent epilepsy related to pediatric epilepsy, post-traumatic epilepsy, treatment resistant epilepsies, sudden unexplained death in epilepsy SUDEP, and sleep and epilepsy advancing the search for a cure, eliminating treatment side effects, and reversing deficits caused by frequent seizures, CURE Epilepsy funds grants for young and established investigators and todate has awarded more than 285 grants in 18 countries around the world.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$1,089,564ExpenseAmt
DescCURE Epilepsy believes that awareness is a critical vehicle to increase the amount of funding for epilepsy research and to share key learnings and opportunities for those impacted by epilepsy. CURE Epilepsy creates, sponsors and levers our website, webinars, seminars, podcasts, educational events and other digital communication to drive this critical awareness.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$5,180,799TotalProgramServiceExpensesAmt
Described In Section501c3Yes (true)DescribedInSection501c3Ind
Schedule B RequiredYes (true)ScheduleBRequiredInd
Political Campaign ActyfalsePoliticalCampaignActyInd
Lobbying ActivitiesYes (true)LobbyingActivitiesInd
Subject To Proxy TaxfalseSubjectToProxyTaxInd
Donor Advised FundfalseDonorAdvisedFundInd
Conservation EasementsfalseConservationEasementsInd
Collections Of ArtfalseCollectionsOfArtInd
Credit CounselingfalseCreditCounselingInd
Donor Rstr Or Quasi EndowmentsfalseDonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (true)ReportLandBuildingEquipmentInd
Report Investments Other SecfalseReportInvestmentsOtherSecInd
Report Program Related InvstfalseReportProgramRelatedInvstInd
Report Other AssetsfalseReportOtherAssetsInd
Report Other LiabilitiesYes (true)ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (true)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (true)IndependentAuditFinclStmtInd
Consolidated Audit Fincl StmtfalseConsolidatedAuditFinclStmtInd
School OperatingfalseSchoolOperatingInd
Foreign OfficefalseForeignOfficeInd
Foreign ActivitiesYes (true)ForeignActivitiesInd
More Than5000 K To OrgYes (true)MoreThan5000KToOrgInd
More Than5000 K To IndividualsfalseMoreThan5000KToIndividualsInd
Professional FundraisingfalseProfessionalFundraisingInd
Fundraising ActivitiesYes (true)FundraisingActivitiesInd
Gaming ActivitiesfalseGamingActivitiesInd
Operate HospitalfalseOperateHospitalInd
Grants To OrganizationsYes (true)GrantsToOrganizationsInd
Grants To IndividualsfalseGrantsToIndividualsInd
Schedule J RequiredYes (true)ScheduleJRequiredInd
Tax Exempt BondsfalseTaxExemptBondsInd
Engaged In Excess Benefit TransfalseEngagedInExcessBenefitTransInd
PY Excess Benefit TransfalsePYExcessBenefitTransInd
Loan OutstandingfalseLoanOutstandingInd
Grant To Related PersonfalseGrantToRelatedPersonInd
Business Rln With Org MemfalseBusinessRlnWithOrgMemInd
Business Rln With Fam MemfalseBusinessRlnWithFamMemInd
Business Rln With35 Ctrl EntfalseBusinessRlnWith35CtrlEntInd
Deductible Non Cash ContrifalseDeductibleNonCashContriInd
Deductible Art ContributionfalseDeductibleArtContributionInd
Terminate OperationsfalseTerminateOperationsInd
Partial LiquidationfalsePartialLiquidationInd
Disregarded EntityfalseDisregardedEntityInd
Related EntityfalseRelatedEntityInd
Related Organization Ctrl EntfalseRelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd OrgfalseTrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted PrtshpfalseActivitiesConductedPrtshpInd
Schedule O RequiredYes (true)ScheduleORequiredInd
IRP Document13IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (true)BackupWthldComplianceInd
Employee22EmployeeCnt
Employment Tax Returns FiledYes (true)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over LimitfalseUnrelatedBusIncmOverLimitInd
Foreign Financial AccountfalseForeignFinancialAccountInd
Prohibited Tax Shelter TransfalseProhibitedTaxShelterTransInd
Taxable Party NotificationfalseTaxablePartyNotificationInd
Nondeductible ContributionsfalseNondeductibleContributionsInd
Quid Pro Quo ContributionsYes (true)QuidProQuoContributionsInd
Quid Pro Quo Contri DisclYes (true)QuidProQuoContriDisclInd
Form8282 Property Disposed OffalseForm8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft CntrctfalseRcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft CntrctfalsePayPremiumsPrsnlBnftCntrctInd
Indoor Tanning ServicesfalseIndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht PymtfalseSubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst IncfalseSubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members16GoverningBodyVotingMembersCnt
Independent Voting Member16IndependentVotingMemberCnt
Family Or Business RlnfalseFamilyOrBusinessRlnInd
Delegation Of Mgmt DutiesfalseDelegationOfMgmtDutiesInd
Change To Org DocumentsfalseChangeToOrgDocumentsInd
Material Diversion Or MisusefalseMaterialDiversionOrMisuseInd
Members Or StockholdersfalseMembersOrStockholdersInd
Election Of Board MembersfalseElectionOfBoardMembersInd
Decisions Subject To ApprovafalseDecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (true)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (true)MinutesOfCommitteesInd
Officer Mailing AddressfalseOfficerMailingAddressInd
Local ChaptersfalseLocalChaptersInd
Form990 Provided To Gvrn BodyYes (true)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (true)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (true)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (true)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (true)WhistleblowerPolicyInd
Document Retention PolicyYes (true)DocumentRetentionPolicyInd
Compensation Process CEOYes (true)CompensationProcessCEOInd
Compensation Process OtherfalseCompensationProcessOtherInd
Investment In Joint VenturefalseInvestmentInJointVentureInd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
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Own WebsiteYes (X)OwnWebsiteInd
Other WebsiteYes (X)OtherWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

FieldValueIRS element (for citing)
PersonJohn AnderluhPersonNm
Phone3122551801PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1420 N Wabash Ave Suite 650AddressLine1Txt
CityChicagoCityNm
State AbbreviationILStateAbbreviationCd
ZIP60611ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (20 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeIndIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
Beth Dean
CEO037.50Yes (X)$329,727$0$39,754
Laura Lubbers
CSO037.50$330,864$0$18,085Yes (X)
Alysha BIehl
Director of Development037.50$164,737$0$13,101Yes (X)
John Anderluh
CFO037.50Yes (X)$115,356$0$3,884
Lisa Cotton
Chair004.00Yes (X)$0$0$0Yes (X)
Shalee Cunneen
Secretary003.00Yes (X)$0$0$0Yes (X)
Kathy McKenna
Treasurer004.00Yes (X)$0$0$0Yes (X)
Steve Austin
Director002.00$0$0$0Yes (X)
Irina Colon
Director002.00$0$0$0Yes (X)
Kim Borden
Director002.00$0$0$0Yes (X)
Roger Heldman
Director002.00$0$0$0Yes (X)
Carrie Garman
Director002.00$0$0$0Yes (X)
Maureen Flood Rabus
Director002.00$0$0$0Yes (X)
David Reifman
Director002.00$0$0$0Yes (X)
Walter Kelly
Director002.00$0$0$0Yes (X)
Matt Schneider
Director002.00$0$0$0Yes (X)
Hannah Whitten
Director002.00$0$0$0Yes (X)
Kelly Cervantes
Director002.00$0$0$0Yes (X)
Justin Gover
Chair Elect002.00Yes (X)$0$0$0Yes (X)
Michael Alexrod
Director002.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$940,684TotalReportableCompFromOrgAmt
Total Other Compensation$74,824TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K4IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (true)TotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
Fundraising$2,391,625FundraisingAmt
Government Grants$532,164GovernmentGrantsAmt
All Other Contributions$3,143,673AllOtherContributionsAmt
Total Contributions$6,067,462TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$268,531TotalRevenueColumnAmt
Exclusion$268,531ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$1,300,638SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$1,077,157SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$223,481SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$223,481TotalRevenueColumnAmt
Exclusion$223,481ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$99,390FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$2,391,625ContriRptFundraisingEventAmt
Fundraising Direct Expenses$627,741FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$528,351TotalRevenueColumnAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescMiscellanousDesc
Total Revenue Column$19,524TotalRevenueColumnAmt
Related Or Exempt Func Income$19,524RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total$19,524OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$6,050,647TotalRevenueColumnAmt
Related Or Exempt Func Income$19,524RelatedOrExemptFuncIncomeAmt
Exclusion$492,012ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$2,194,759TotalAmt
Program Services$2,194,759ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$705,831TotalAmt
Program Services$705,831ProgramServicesAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$445,083TotalAmt
Program Services$296,447ProgramServicesAmt
Management And General$49,408ManagementAndGeneralAmt
Fundraising$99,228FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$1,399,976TotalAmt
Program Services$918,637ProgramServicesAmt
Management And General$177,336ManagementAndGeneralAmt
Fundraising$304,003FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$258,319TotalAmt
Program Services$156,135ProgramServicesAmt
Management And General$29,663ManagementAndGeneralAmt
Fundraising$72,521FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$132,661TotalAmt
Program Services$80,586ProgramServicesAmt
Management And General$15,050ManagementAndGeneralAmt
Fundraising$37,025FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$16,275TotalAmt
Program Services$10,429ProgramServicesAmt
Management And General$1,672ManagementAndGeneralAmt
Fundraising$4,174FundraisingAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
FieldValueIRS element (for citing)
Fees For Services Prof FundraisingFeesForServicesProfFundraising

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$24,029TotalAmt
Management And General$24,029ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$10,074TotalAmt
Program Services$6,454ProgramServicesAmt
Management And General$1,036ManagementAndGeneralAmt
Fundraising$2,584FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$36,721TotalAmt
Program Services$16,707ProgramServicesAmt
Management And General$2,295ManagementAndGeneralAmt
Fundraising$17,719FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$150,564TotalAmt
Program Services$125,356ProgramServicesAmt
Management And General$9,280ManagementAndGeneralAmt
Fundraising$15,928FundraisingAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$109,995TotalAmt
Program Services$73,396ProgramServicesAmt
Management And General$11,771ManagementAndGeneralAmt
Fundraising$24,828FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$58,943TotalAmt
Program Services$22,439ProgramServicesAmt
Management And General$2,852ManagementAndGeneralAmt
Fundraising$33,652FundraisingAmt

Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$151,146TotalAmt
Program Services$139,859ProgramServicesAmt
Fundraising$11,287FundraisingAmt

Interest InterestGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Payments To Affiliates PaymentsToAffiliatesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$25,903TotalAmt
Program Services$16,597ProgramServicesAmt
Management And General$2,662ManagementAndGeneralAmt
Fundraising$6,644FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$12,956TotalAmt
Program Services$8,302ProgramServicesAmt
Management And General$1,331ManagementAndGeneralAmt
Fundraising$3,323FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
Advocacy and Awareness$187,708$187,708
Subcontractors$203,044$177,650$1,169$24,225
Dues and Subscriptions$10,944$4,762$45$6,137
Bank, Merchant, Investment Fees$47,443$30,399$4,875$12,169

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$14,235TotalAmt
Program Services$8,346ProgramServicesAmt
Management And General$1,339ManagementAndGeneralAmt
Fundraising$4,550FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$6,196,609TotalAmt
Program Services$5,180,799ProgramServicesAmt
Management And General$335,813ManagementAndGeneralAmt
Fundraising$679,997FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$544,726BOYAmt
EOY$677,181EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$1,106,132BOYAmt
EOY$1,226,240EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$32,706BOYAmt
EOY$33,080EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$432,322LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$271,482LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$68,705BOYAmt
EOY$160,840EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$8,471,391BOYAmt
EOY$8,281,560EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$363,412BOYAmt
EOY$311,063EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$10,587,072BOYAmt
EOY$10,689,964EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$124,754BOYAmt
EOY$176,048EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$3,066,066BOYAmt
EOY$3,166,290EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$28,093BOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$408,207BOYAmt
EOY$351,518EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$3,627,120BOYAmt
EOY$3,693,856EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$5,305,489BOYAmt
EOY$4,865,184EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,654,463BOYAmt
EOY$2,130,924EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$6,959,952BOYAmt
EOY$6,996,108EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$10,587,072BOYAmt
EOY$10,689,964EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$145,962ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$182,118NetUnrlzdGainsLossesInvstAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or ReviewfalseAccountantCompileOrReviewInd
FS AuditedYes (true)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (true)AuditCommitteeInd
Federal Grant Audit RequiredfalseFederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$6,964,176CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$6,172,734CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$5,937,146CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$6,403,752CurrentTaxYearMinus1YearAmt
Current Tax Year$6,067,462CurrentTaxYearAmt
Total$31,545,270TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$6,964,176CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$6,172,734CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$5,937,146CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$6,403,752CurrentTaxYearMinus1YearAmt
Current Tax Year$6,067,462CurrentTaxYearAmt
Total$31,545,270TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$2,130,846SubstantialContributorsTotAmt
Public Support Total170$29,414,424PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$105,918CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$124,018CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$140,351CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$245,340CurrentTaxYearMinus1YearAmt
Current Tax Year$268,531CurrentTaxYearAmt
Total$884,158TotalAmt
FieldValueIRS element (for citing)
Total Support$32,429,428TotalSupportAmt
Gross Receipts Rltd Activities$358,695GrossReceiptsRltdActivitiesAmt
Public Support CY1700.90700PublicSupportCY170Pct
Public Support PY1700.91770PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule C IRS990ScheduleC

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$442,077CurrentYearMinus3Amt
Current Year Minus2$439,656CurrentYearMinus2Amt
Total$881,733TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$1,322,600LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$40,000CurrentYearMinus3Amt
Current Year Minus2$10,000CurrentYearMinus2Amt
Total$50,000TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$110,519CurrentYearMinus3Amt
Current Year Minus2$109,914CurrentYearMinus2Amt
Total$220,433TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$330,650GrassrootsCeilingAmt

Schedule D IRS990ScheduleD

FieldValueIRS element (for citing)
Incl Escrow Custodial Acct LiabfalseInclEscrowCustodialAcctLiabInd

Leasehold Improvements LeaseholdImprovementsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$100,519OtherCostOrOtherBasisAmt
Depreciation$83,950DepreciationAmt
Book Value$16,569BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$202,953OtherCostOrOtherBasisAmt
Depreciation$178,942DepreciationAmt
Book Value$24,011BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$128,850OtherCostOrOtherBasisAmt
Depreciation$8,590DepreciationAmt
Book Value$120,260BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$160,840TotalBookValueLandBuildingsAmt

Other Securities OtherSecuritiesGrp (2 entries)

DescDesc
Financial derivatives and other financial products
Closely-held equity interests

Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)

DescDescAmtAmt
Federal income taxes
Operating Lease Liabilities$351,518
FieldValueIRS element (for citing)
Total Liability$351,518TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$6,220,909TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$182,118NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$12,173DonatedServicesAndUseFcltsAmt
Revenue Not Reported$194,291RevenueNotReportedAmt
Revenue Subtotal$6,026,618RevenueSubtotalAmt
Investment Expenses Not Incld$24,029InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$24,029RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$6,050,647TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$6,184,753TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$12,173DonatedServicesUseFcltsAmt
Expenses Not Reported$12,173ExpensesNotReportedAmt
Expenses Subtotal$6,172,580ExpensesSubtotalAmt
Investment Expenses Not Incld2$24,029InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$24,029ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$6,196,609TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceX 2FormAndLineReferenceDesc
ExplanationThe Organization is exempt from federal income taxes under Section 501c3 of the Internal Revenue Code and reported no unrelated business income for the year ended December 31, 2024 and 2023. Management represents there are no uncertain tax positions or other provision for income taxes that should be recognized in these financial statements. In addition, the Organization qualifies to receive deductible charitable contributions pursuant to Section 170b1Avi.ExplanationTxt

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records MaintainedYes (true)GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)

RegionRegionTxtType Of Activities ConductedTypeOfActivitiesConductedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
Europe Including Iceland and GreenlandGrants to recipients in region$697,331
Middle East and North AfricaGrants to recipients in region$3,500
North AmericaGrants to recipients in region$5,000
FieldValueIRS element (for citing)
Subtotal Spent$705,831SubtotalSpentAmt
Total Spent$705,831TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
Europe Including Iceland and GreenlandResearch Grant$697,331Wire
Middle East and North AfricaConference Grant$3,500Wire
North AmericaConference Grant$5,000Wire
FieldValueIRS element (for citing)
Total Other Org3TotalOtherOrgCnt
Transfer To Foreign CorpfalseTransferToForeignCorpInd
Interest In Foreign TrustfalseInterestInForeignTrustInd
Foreign Corp OwnershipfalseForeignCorpOwnershipInd
Passive Foreign Investmest CofalsePassiveForeignInvestmestCoInd
Foreign PartnershipfalseForeignPartnershipInd
Boycott CountriesfalseBoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePart I Line 2FormAndLineReferenceDesc
ExplanationGrantees are required to make periodic progress reportsExplanationTxt

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1Chicago benefitEvent1Nm
Gross Receipts Event1$1,821,229GrossReceiptsEvent1Amt
Charitable Contri Event1$1,730,139CharitableContriEvent1Amt
Gross Revenue Event1$91,090GrossRevenueEvent1Amt
Food And Beverage Event1$126,943FoodAndBeverageEvent1Amt
Entertainment Event1$225,428EntertainmentEvent1Amt
Other Direct Expenses Event1$162,845OtherDirectExpensesEvent1Amt
Event2NYC BenefitEvent2Nm
Gross Receipts Event2$131,985GrossReceiptsEvent2Amt
Charitable Contri Event2$123,685CharitableContriEvent2Amt
Gross Revenue Event2$8,300GrossRevenueEvent2Amt
Rent Facility Costs Event2$3,653RentFacilityCostsEvent2Amt
Food And Beverage Event2$17,532FoodAndBeverageEvent2Amt
Entertainment Event2$3,875EntertainmentEvent2Amt
Other Direct Expenses Event2$29,454OtherDirectExpensesEvent2Amt
Other Events Total3OtherEventsTotalCnt
Gross Receipts Other Events$537,801GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$537,801CharitableContriOtherEventsAmt
Non Cash Prizes Other Events$348NonCashPrizesOtherEventsAmt
Rent Fclty Costs Other Events$4,567RentFcltyCostsOtherEventsAmt
Food And Beverage Other Events$14,538FoodAndBeverageOtherEventsAmt
Entertainment Other Events$910EntertainmentOtherEventsAmt
Oth Direct Expnss Other Events$37,648OthDirectExpnssOtherEventsAmt
Gross Receipts Total$2,491,015GrossReceiptsTotalAmt
Charitable Contributions Tot$2,391,625CharitableContributionsTotAmt
Gross Revenue Total Events$99,390GrossRevenueTotalEventsAmt
Non Cash Prizes Total Events$348NonCashPrizesTotalEventsAmt
Rent Fclty Costs Total Events$8,220RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events$159,013FoodAndBeverageTotalEventsAmt
Entertainment Total Events$230,213EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$229,947OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$627,741DirectExpenseSummaryEventsAmt
Net Income Summary-$528,351NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (true)GrantRecordsMaintainedInd

Recipient Table RecipientTable (13 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
Boston Children's Hospital
PO Box 414413BostonMA02241042774441501C3$250,000Research Grant
University of Wisconsin Madison
21 N Park St Ste 6401MadisonWI53715396006492501C3$250,000Research Grant
St Judes Children's Hospital
262 Danny Thomas PlaceMemphisTN38105620646012501C3$250,000Research Grant
University of Michigan
PO Box 223131PittsburghPA15251386006309501C3$250,000Research Grant
University of Utah
201 S Preseidents CircleSalt Lake CityUT84112876000525501C3$199,872Research Grant
Gryphon Bio Inc
6200 E Grayson St Ste 101San AntonioTX78215825230170C-Corp$150,000Research Grant
Massachusetts General Hospital
PO Box 414867BostonMA02241041564655501C3$125,000Research Grant
University of California Los Angeles
405 Hilgard Ave Box 957089Los AngelesCA90095956006143501C3$125,000Research Grant
Weil Medical College Cornell University
PO Box 22371New YorkNY10087150532082501C3$115,190Research Grant
Quiver Biosciences
150 Cambridgepark DriveCambridgeMA02140922683215C-Corp$100,000Research Grant
Yale University
PO Box 1873New HavenCT06508060646973501C3$100,000Research Grant
Morehouse School of Medicine
720 Westview DrAtlantaGA30310580566205501C3$80,000Research Grant
American Epilepsy Society
135 South LaSalle Ste 2850ChicagoIL60603046112600501C3$15,500Conference Grant
FieldValueIRS element (for citing)
Total501c3 Org11Total501c3OrgCnt
Total Other Org2TotalOtherOrgCnt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Compensation CommitteeYes (X)CompensationCommitteeInd
Independent ConsultantYes (X)IndependentConsultantInd
Written Employment ContractYes (X)WrittenEmploymentContractInd
Compensation SurveyYes (X)CompensationSurveyInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance PaymentfalseSeverancePaymentInd
Supplemental Nonqual Rtr PlanfalseSupplementalNonqualRtrPlanInd
Equity Based Comp ArrngmfalseEquityBasedCompArrngmInd
Comp Based On Revenue Of Flng OrgfalseCompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related OrgsfalseCompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng OrgfalseCompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd OrgsfalseCompBsdNetEarnsRltdOrgsInd
Any Non Fixed PaymentsfalseAnyNonFixedPaymentsInd
Initial Contract ExceptionfalseInitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (3 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtBonus Filing OrganizationBonusFilingOrganizationAmountDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmt
Beth Dean
CEO$299,894$29,833$10,101$29,653$369,481
Laura Lubbers
CSO$301,358$29,506$9,987$8,098$348,949
Alysha BIehl
Director of Development$164,737$5,003$8,098$177,838

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (4 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part VI, Section B, Line 11bForm 990 is reviewed by the finance manager, treasurer and chief executive officer. When the draft is approved, it is sent to the entire board
Form 990, Part VI, Section B, Line 12cEach board member signs it annually and expects to self-monitor. Conflicts are dealt with on a case-by-case basis.
Form 990, Part VI, Section C, Line 19Governing documents and conflict of interest policy are not generally available to the public. The organizations financial statements are available on its website.
Form 990, Part VI, Section B, Line 15aComparable salary information is obtained and reviewed using an outside executive search firm. The board of directors has final approval and review compensation annually.

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