STRATEGY STUDIO / NONPROFIT PEOPLE SEARCH

CITIZENS UNITED FOR RESEARCH IN EPILEPSY: Form 990, tax year 2025

View the entire original 990 at ProPublica ↗

Organization
CITIZENS UNITED FOR RESEARCH IN EPILEPSY (EIN 36-4253176)
Tax period
2025-01-01 to 2025-12-31
Filed
2026-04-08
IRS object ID
202630989349301528
Schema version
2025v4.1
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)
Return2026-04-08T03:26:29-00:00ReturnTs
Tax Period End2025-12-31TaxPeriodEndDt

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 Begin2025-01-01TaxPeriodBeginDt

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
Signature2026-04-08SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonCheryden JuergensenPreparerPersonNm
PTINP01252676PTIN
Phone8153441300PhoneNum
Preparation2026-04-08PreparationDt
FieldValueIRS element (for citing)
Tax2025TaxYr
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$6,719,515GrossReceiptsAmt
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 Employee20TotalEmployeeCnt
Total Volunteers330TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$6,067,462PYContributionsGrantsAmt
CY Contributions Grants$4,941,461CYContributionsGrantsAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$492,012PYInvestmentIncomeAmt
CY Investment Income$567,508CYInvestmentIncomeAmt
PY Other Revenue-$508,827PYOtherRevenueAmt
CY Other Revenue-$519,797CYOtherRevenueAmt
PY Total Revenue$6,050,647PYTotalRevenueAmt
CY Total Revenue$4,989,172CYTotalRevenueAmt
PY Grants And Similar Paid$2,900,590PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$2,274,098CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$2,236,039PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$2,332,251CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$707,715CYTotalFundraisingExpenseAmt
PY Other Expenses$1,059,980PYOtherExpensesAmt
CY Other Expenses$922,836CYOtherExpensesAmt
PY Total Expenses$6,196,609PYTotalExpensesAmt
CY Total Expenses$5,529,185CYTotalExpensesAmt
PY Revenues Less Expenses-$145,962PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$540,013CYRevenuesLessExpensesAmt
Total Assets BOY$10,689,964TotalAssetsBOYAmt
Total Assets EOY$10,409,120TotalAssetsEOYAmt
Total Liabilities BOY$3,693,856TotalLiabilitiesBOYAmt
Total Liabilities EOY$3,714,249TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$6,996,108NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$6,694,871NetAssetsOrFundBalancesEOYAmt
MissionTo find a cure for epilepsy by promoting and funding patient focused research.MissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$3,497,893ExpenseAmt
DescSince its inception in 1998, CURE Epilepsy has raised more than 100 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 to date has awarded more than 300 grants in 19 countries around the world.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$998,335ExpenseAmt
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$4,496,228TotalProgramServiceExpensesAmt
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
Employee20EmployeeCnt
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
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldHIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNMStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldRIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTXStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
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 (24 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtOfficerOfficerIndHighest Compensated EmployeeHighestCompensatedEmployeeIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
Beth Dean
CEO037.50Yes (X)Yes (X)$344,007$0$0
Laura Lubbers
CSO037.50Yes (X)Yes (X)$343,883$0$0
Alysha Biehl
Director of Development037.50Yes (X)$170,346$0$0
Dana Vielmetti
Director of Marketing and Communications037.50Yes (X)$164,251$0$0
Priya Balasurbramanian
Director of Research037.50Yes (X)$138,007$0$0
Elaine O'Loughlin
Associate Director of Research Initiatives037.50Yes (X)$134,338$0$0
John Anderluh
CFO030.00Yes (X)$106,400$0$0
Angela Mota
Director of Major Gifts037.50Yes (X)$100,904$0$0
Lisa Cotton
Immediate Past Chair004.00$0$0$0Yes (X)
Shalee Cunneen
Secretary004.00Yes (X)$0$0$0Yes (X)
Steve Austin
Director002.00$0$0$0Yes (X)
Irina Colon
Director001.00$0$0$0Yes (X)
Kim Borden
Director002.00$0$0$0Yes (X)
Roger Heldman
Treasurer004.00Yes (X)$0$0$0Yes (X)
Carrie Garman
Director001.00$0$0$0Yes (X)
Maureen Flood Rabus
Director001.00$0$0$0Yes (X)
David Reifman
Director001.00$0$0$0Yes (X)
Walter Kelly
Director001.00$0$0$0Yes (X)
Matt Schneider
Director004.00$0$0$0Yes (X)
Kelly Cervantes
Director004.00$0$0$0Yes (X)
Michael Alexrod
Director001.00$0$0$0Yes (X)
Greg Mayes
Director001.00$0$0$0Yes (X)
Jonathan Tuteur
Director004.00$0$0$0Yes (X)
Justin Gover
Chair006.00Yes (X)$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$1,502,136TotalReportableCompFromOrgAmt
Indiv Rcvd Greater Than100 K8IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (true)TotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
Fundraising$2,372,560FundraisingAmt
Government Grants$245,669GovernmentGrantsAmt
All Other Contributions$2,323,232AllOtherContributionsAmt
Total Contributions$4,941,461TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$239,084TotalRevenueColumnAmt
Exclusion$239,084ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$1,466,520SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$1,138,096SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$328,424SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$328,424TotalRevenueColumnAmt
Exclusion$328,424ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$72,450FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$2,372,560ContriRptFundraisingEventAmt
Fundraising Direct Expenses$592,247FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$519,797TotalRevenueColumnAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$4,989,172TotalRevenueColumnAmt
Exclusion$567,508ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$1,403,086TotalAmt
Program Services$1,403,086ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$871,012TotalAmt
Program Services$871,012ProgramServicesAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$379,849TotalAmt
Program Services$235,506ProgramServicesAmt
Management And General$41,783ManagementAndGeneralAmt
Fundraising$102,560FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$1,541,279TotalAmt
Program Services$1,054,982ProgramServicesAmt
Management And General$177,699ManagementAndGeneralAmt
Fundraising$308,598FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$274,814TotalAmt
Program Services$167,487ProgramServicesAmt
Management And General$33,351ManagementAndGeneralAmt
Fundraising$73,976FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$136,309TotalAmt
Program Services$83,834ProgramServicesAmt
Management And General$14,304ManagementAndGeneralAmt
Fundraising$38,171FundraisingAmt

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$17,200TotalAmt
Program Services$11,173ProgramServicesAmt
Management And General$1,654ManagementAndGeneralAmt
Fundraising$4,373FundraisingAmt

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$23,059TotalAmt
Management And General$23,059ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$9,546TotalAmt
Program Services$6,201ProgramServicesAmt
Management And General$918ManagementAndGeneralAmt
Fundraising$2,427FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$26,954TotalAmt
Program Services$12,390ProgramServicesAmt
Management And General$1,834ManagementAndGeneralAmt
Fundraising$12,730FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$170,814TotalAmt
Program Services$142,678ProgramServicesAmt
Management And General$8,950ManagementAndGeneralAmt
Fundraising$19,186FundraisingAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$113,737TotalAmt
Program Services$73,882ProgramServicesAmt
Management And General$10,939ManagementAndGeneralAmt
Fundraising$28,916FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$50,898TotalAmt
Program Services$14,740ProgramServicesAmt
Management And General$1,553ManagementAndGeneralAmt
Fundraising$34,605FundraisingAmt

Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$79,242TotalAmt
Program Services$74,239ProgramServicesAmt
Fundraising$5,003FundraisingAmt

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$19,843TotalAmt
Program Services$12,890ProgramServicesAmt
Management And General$1,908ManagementAndGeneralAmt
Fundraising$5,045FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$14,250TotalAmt
Program Services$9,256ProgramServicesAmt
Management And General$1,371ManagementAndGeneralAmt
Fundraising$3,623FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
Advocacy and Awareness$123,016$123,016
Subcontractors$205,169$159,924$302$44,943
Dues and Subscriptions$10,119$4,313$35$5,771
Bank, Merchant, Investment Fees$38,056$24,721$3,660$9,675

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$20,933TotalAmt
Program Services$10,898ProgramServicesAmt
Management And General$1,922ManagementAndGeneralAmt
Fundraising$8,113FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$5,529,185TotalAmt
Program Services$4,496,228ProgramServicesAmt
Management And General$325,242ManagementAndGeneralAmt
Fundraising$707,715FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$677,181BOYAmt
EOY$382,980EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
EOY$667,938EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$1,226,240BOYAmt
EOY$712,303EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$33,080BOYAmt
EOY$47,724EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$443,908LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$317,095LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$160,840BOYAmt
EOY$126,813EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$8,281,560BOYAmt
EOY$8,185,042EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$311,063BOYAmt
EOY$286,320EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$10,689,964BOYAmt
EOY$10,409,120EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$176,048BOYAmt
EOY$177,800EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$3,166,290BOYAmt
EOY$3,215,330EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$351,518BOYAmt
EOY$321,119EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$3,693,856BOYAmt
EOY$3,714,249EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$4,865,184BOYAmt
EOY$5,235,674EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$2,130,924BOYAmt
EOY$1,459,197EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$6,996,108BOYAmt
EOY$6,694,871EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$10,689,964BOYAmt
EOY$10,409,120EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$540,013ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$238,776NetUnrlzdGainsLossesInvstAmt
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$6,172,734CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$5,937,146CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$6,403,752CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$6,067,462CurrentTaxYearMinus1YearAmt
Current Tax Year$4,941,461CurrentTaxYearAmt
Total$29,522,555TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$6,172,734CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$5,937,146CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$6,403,752CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$6,067,462CurrentTaxYearMinus1YearAmt
Current Tax Year$4,941,461CurrentTaxYearAmt
Total$29,522,555TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$2,322,309SubstantialContributorsTotAmt
Public Support Total170$27,200,246PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$124,018CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$140,351CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$245,340CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$268,531CurrentTaxYearMinus1YearAmt
Current Tax Year$239,084CurrentTaxYearAmt
Total$1,017,324TotalAmt
FieldValueIRS element (for citing)
Total Support$30,539,879TotalSupportAmt
Gross Receipts Rltd Activities$431,145GrossReceiptsRltdActivitiesAmt
Public Support CY1700.89060PublicSupportCY170Pct
Public Support PY1700.90700PublicSupportPY170Pct
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$439,656CurrentYearMinus3Amt
Total$439,656TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$659,484LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

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

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$109,914CurrentYearMinus3Amt
Total$109,914TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$164,871GrassrootsCeilingAmt

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$87,245DepreciationAmt
Book Value$13,274BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$214,539OtherCostOrOtherBasisAmt
Depreciation$195,490DepreciationAmt
Book Value$19,049BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$128,850OtherCostOrOtherBasisAmt
Depreciation$34,360DepreciationAmt
Book Value$94,490BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$126,813TotalBookValueLandBuildingsAmt

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$321,119
FieldValueIRS element (for citing)
Total Liability$321,119TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$5,252,595TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$238,776NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$47,706DonatedServicesAndUseFcltsAmt
Revenue Not Reported$286,482RevenueNotReportedAmt
Revenue Subtotal$4,966,113RevenueSubtotalAmt
Investment Expenses Not Incld$23,059InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$23,059RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$4,989,172TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$5,553,832TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$47,706DonatedServicesUseFcltsAmt
Expenses Not Reported$47,706ExpensesNotReportedAmt
Expenses Subtotal$5,506,126ExpensesSubtotalAmt
Investment Expenses Not Incld2$23,059InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$23,059ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$5,529,185TotalExpensesPerForm990Amt

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, 2025. 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$399,903
Middle East and North AfricaGrants to recipients in region$249,587
North AmericaGrants to recipients in region$221,522
FieldValueIRS element (for citing)
Subtotal Spent$871,012SubtotalSpentAmt
Total Spent$871,012TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
Europe Including Iceland and GreenlandResearch Grant$399,903Wire
Middle East and North AfricaResearch Grant$249,587Wire
North AmericaResearch Grant$221,522Wire
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$1,618,953GrossReceiptsEvent1Amt
Charitable Contri Event1$1,562,553CharitableContriEvent1Amt
Gross Revenue Event1$56,400GrossRevenueEvent1Amt
Non Cash Prizes Event1$598NonCashPrizesEvent1Amt
Food And Beverage Event1$160,422FoodAndBeverageEvent1Amt
Entertainment Event1$115,526EntertainmentEvent1Amt
Other Direct Expenses Event1$169,102OtherDirectExpensesEvent1Amt
Event2NYC BenefitEvent2Nm
Gross Receipts Event2$207,399GrossReceiptsEvent2Amt
Charitable Contri Event2$191,349CharitableContriEvent2Amt
Gross Revenue Event2$16,050GrossRevenueEvent2Amt
Non Cash Prizes Event2$478NonCashPrizesEvent2Amt
Food And Beverage Event2$30,374FoodAndBeverageEvent2Amt
Entertainment Event2$7,921EntertainmentEvent2Amt
Other Direct Expenses Event2$33,291OtherDirectExpensesEvent2Amt
Other Events Total2OtherEventsTotalCnt
Gross Receipts Other Events$618,658GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$618,658CharitableContriOtherEventsAmt
Rent Fclty Costs Other Events$19,184RentFcltyCostsOtherEventsAmt
Oth Direct Expnss Other Events$55,351OthDirectExpnssOtherEventsAmt
Gross Receipts Total$2,445,010GrossReceiptsTotalAmt
Charitable Contributions Tot$2,372,560CharitableContributionsTotAmt
Gross Revenue Total Events$72,450GrossRevenueTotalEventsAmt
Non Cash Prizes Total Events$1,076NonCashPrizesTotalEventsAmt
Rent Fclty Costs Total Events$19,184RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events$190,796FoodAndBeverageTotalEventsAmt
Entertainment Total Events$123,447EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$257,744OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$592,247DirectExpenseSummaryEventsAmt
Net Income Summary-$519,797NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (14 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
Gordon Research Conferences
5586 Post Rd G02East GreenwichRI02818260150662501c3$15,000Research Conference
American Epilepsy Society
135 South LaSalle Suite 2850ChicagoIL60603046112600501c3$15,000Research Conference
Nucleus Healthcare Consulting
900 Sunwood CourtEaganMN55123920768771Individual$10,566Research Grant
Stanford University
PO Box 884253Los AngelesCA90088941156365501c3$258,324Research Grant
Childrens Hospital of Philadelphia
PO Box 8500PhiladelphiaPA19178222237932501c3$50,000Research Grant
Bruker Spatial Biology
530 Fairview AvenueSeattleWA98109992603682C Corp$9,673Research Grant
Mid-Atlantic Sleep and Epilepsy Center
6410 Rockledge DrBethesdaMD20817300767458S Corp$6,300Research Grant
Research Foundation for Mental Hygiene
150 Broadway Suite 301MenandsNY12204141410842501c3$250,000Research Grant
Trustees of the University of Pennsylvania
3451 Walnut StreetPhiladelphiaPA19104231352685501c3$125,000Research Grant
University of California Riverside
200 University Office BuildingRiversideCA92521856006142501c3$125,000Research Grant
University of Southern California
3551 Trousdale PkwyLos AngelesCA90089951642394501c3$125,000Research Grant
Seattle Children's Hospital
4800 Sand Point Way NESeattleWA98105910564748501c3$100,000Research Grant
Northwestern University
633 Clark Street Room G-547EvanstonIL60208362167817501c3$100,000Research Grant
The Jackson Laboratory
600 Main StreetBar HarborME04609010211513501c3$100,000Research Grant
FieldValueIRS element (for citing)
Total501c3 Org11Total501c3OrgCnt
Total Other Org3TotalOtherOrgCnt

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 (4 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtBonus Filing OrganizationBonusFilingOrganizationAmount
Alysha Biehl
Director of Development$170,346$5,184$8,755$184,285
Beth Dean
CEO$312,977$10,519$25,323$379,849$31,030
Laura Lubbers
CSO$313,267$10,379$8,721$362,983$30,616
Dana Vielmetti
Director of Marketing and Communications$164,251$5,145$25,394$194,790

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.