STRATEGY STUDIO / NONPROFIT PEOPLE SEARCH

CITIZENS UNITED FOR RESEARCH IN EPILEPSY: Form 990, tax year 2023

View the entire original 990 at ProPublica ↗

Organization
CITIZENS UNITED FOR RESEARCH IN EPILEPSY (EIN 36-4253176)
Tax period
2023-01-01 to 2023-12-31
Filed
2024-05-14
IRS object ID
202411359349306666
Schema version
2023v5.0
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)
Return2024-05-14T12:53:53-00:00ReturnTs
Tax Period End2023-12-31TaxPeriodEndDt

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 Begin2023-01-01TaxPeriodBeginDt

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
Signature2024-05-14SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstBethPersonFirstNm
Person LastDeanPersonLastNm
FieldValueIRS element (for citing)
SSN999009999SSN

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonCheryden JuergensenPreparerPersonNm
PTINP01252676PTIN
Phone8153441300PhoneNum
Preparation2024-05-14PreparationDt

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

FieldValueIRS element (for citing)
Trusted Customer2TrustedCustomerCd
Authentication Assurance LevelAAL1AuthenticationAssuranceLevelCd
Identity Assurance LevelIAL1IdentityAssuranceLevelCd
FieldValueIRS element (for citing)
Tax2023TaxYr
Build TS2023-04-26 12:10:37ZBuildTS

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$7,387,467GrossReceiptsAmt
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 Body15VotingMembersGoverningBodyCnt
Voting Members Independent15VotingMembersIndependentCnt
Total Employee19TotalEmployeeCnt
Total Volunteers275TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$5,937,146PYContributionsGrantsAmt
CY Contributions Grants$6,403,752CYContributionsGrantsAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$846,777PYInvestmentIncomeAmt
CY Investment Income$355,902CYInvestmentIncomeAmt
PY Other Revenue-$552,547PYOtherRevenueAmt
CY Other Revenue-$576,491CYOtherRevenueAmt
PY Total Revenue$6,231,376PYTotalRevenueAmt
CY Total Revenue$6,183,163CYTotalRevenueAmt
PY Grants And Similar Paid$2,804,485PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$2,759,409CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$2,174,207PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$2,243,543CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$608,021CYTotalFundraisingExpenseAmt
PY Other Expenses$814,421PYOtherExpensesAmt
CY Other Expenses$990,398CYOtherExpensesAmt
PY Total Expenses$5,793,113PYTotalExpensesAmt
CY Total Expenses$5,993,350CYTotalExpensesAmt
PY Revenues Less Expenses$438,263PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$189,813CYRevenuesLessExpensesAmt
Total Assets BOY$10,252,744TotalAssetsBOYAmt
Total Assets EOY$10,587,072TotalAssetsEOYAmt
Total Liabilities BOY$4,004,057TotalLiabilitiesBOYAmt
Total Liabilities EOY$3,627,120TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$6,248,687NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$6,959,952NetAssetsOrFundBalancesEOYAmt
MissionTo find a cure for epilepsy by promoting and funding patient focused research.MissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$3,918,989ExpenseAmt
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$1,138,426ExpenseAmt
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$5,057,415TotalProgramServiceExpensesAmt
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
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Grant To Related PersonfalseGrantToRelatedPersonInd
Business Rln With Org MemfalseBusinessRlnWithOrgMemInd
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Partial LiquidationfalsePartialLiquidationInd
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Schedule O RequiredYes (true)ScheduleORequiredInd
IRP Document20IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (true)BackupWthldComplianceInd
Employee19EmployeeCnt
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 Members15GoverningBodyVotingMembersCnt
Independent Voting Member15IndependentVotingMemberCnt
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
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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 (21 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtKey EmployeeKeyEmployeeIndHighest Compensated EmployeeHighestCompensatedEmployeeIndIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
Beth Dean
CEO037.50Yes (X)$314,565$0$38,569
Laura Lubbers
Chief Scientific Officer037.50$316,541$0$17,360Yes (X)
Alysha Biehl
Sr. Director Development037.50$156,866$0$14,647Yes (X)
Dana Vielmetti
Director, Marketing037.50$146,627$0$3,294Yes (X)
Priya Balasubramanian
Assoc Director of Research037.50$120,444$0$26,176Yes (X)
John Anderluh
CFO037.50Yes (X)$116,125$0$28,915
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)
Mike Axelrod
Director002.00$0$0$0Yes (X)
Kim Borden
Director002.00$0$0$0Yes (X)
Marilynn Gardner
Director002.00$0$0$0Yes (X)
Carrie Garman
Director002.00$0$0$0Yes (X)
Justin Gover
Director002.00$0$0$0Yes (X)
David Reifman
Director002.00$0$0$0Yes (X)
Tina Sacks
Director002.00$0$0$0Yes (X)
Matt Schneider
Director003.00$0$0$0Yes (X)
Hannah Whitten
Director002.00$0$0$0Yes (X)
Irina Colon
Director002.00$0$0$0Yes (X)
Kelly Cervantes
Director002.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$1,171,168TotalReportableCompFromOrgAmt
Total Other Compensation$128,961TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K6IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (true)TotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp

Contractor Name ContractorName

FieldValueIRS element (for citing)
PersonWilliam Morris Endeavor Ent LLCPersonNm

Contractor Address ContractorAddress

US Address USAddress

FieldValueIRS element (for citing)
Address Line19601 Wilshire BlvdAddressLine1Txt
CityLos AngelesCityNm
State AbbreviationCAStateAbbreviationCd
ZIP90210ZIPCd
FieldValueIRS element (for citing)
ServicesMusic for BenefitServicesDesc
Compensation$100,000CompensationAmt
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K1CntrctRcvdGreaterThan100KCnt
Fundraising$2,768,235FundraisingAmt
Government Grants$779,179GovernmentGrantsAmt
All Other Contributions$2,856,338AllOtherContributionsAmt
Total Contributions$6,403,752TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$245,340TotalRevenueColumnAmt
Exclusion$245,340ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$541,381SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$430,819SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$110,562SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$110,562TotalRevenueColumnAmt
Exclusion$110,562ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$196,994FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$2,768,235ContriRptFundraisingEventAmt
Fundraising Direct Expenses$773,485FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$576,491TotalRevenueColumnAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$6,183,163TotalRevenueColumnAmt
Exclusion$355,902ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$1,975,934TotalAmt
Program Services$1,975,934ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$783,475TotalAmt
Program Services$783,475ProgramServicesAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$747,231TotalAmt
Program Services$474,711ProgramServicesAmt
Management And General$82,883ManagementAndGeneralAmt
Fundraising$189,637FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$1,076,066TotalAmt
Program Services$776,387ProgramServicesAmt
Management And General$135,555ManagementAndGeneralAmt
Fundraising$164,124FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$292,153TotalAmt
Program Services$185,287ProgramServicesAmt
Management And General$32,845ManagementAndGeneralAmt
Fundraising$74,021FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$128,093TotalAmt
Program Services$81,675ProgramServicesAmt
Management And General$14,270ManagementAndGeneralAmt
Fundraising$32,148FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$122,594TotalAmt
Program Services$111,753ProgramServicesAmt
Management And General$486ManagementAndGeneralAmt
Fundraising$10,355FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$15,055TotalAmt
Program Services$13,350ProgramServicesAmt
Management And General$1,705ManagementAndGeneralAmt

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$20,094TotalAmt
Management And General$20,094ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$14,703TotalAmt
Program Services$13,130ProgramServicesAmt
Management And General$1,573ManagementAndGeneralAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$47,959TotalAmt
Program Services$18,060ProgramServicesAmt
Management And General$2,466ManagementAndGeneralAmt
Fundraising$27,433FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$117,175TotalAmt
Program Services$75,958ProgramServicesAmt
Management And General$12,536ManagementAndGeneralAmt
Fundraising$28,681FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$54,104TotalAmt
Program Services$17,256ProgramServicesAmt
Management And General$2,769ManagementAndGeneralAmt
Fundraising$34,079FundraisingAmt

Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$61,087TotalAmt
Program Services$61,087ProgramServicesAmt

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$25,494TotalAmt
Program Services$16,527ProgramServicesAmt
Management And General$2,727ManagementAndGeneralAmt
Fundraising$6,240FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$18,972TotalAmt
Program Services$12,298ProgramServicesAmt
Management And General$2,030ManagementAndGeneralAmt
Fundraising$4,644FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
Advocacy and Awareness$258,811$258,811
Other Expenses$7,247$2,333$1,462$3,452
Computer, Web Development and Internet$174,175$145,072$8,851$20,252
Bank, Merchant, Investment Fees$52,928$34,311$5,662$12,955

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$5,993,350TotalAmt
Program Services$5,057,415ProgramServicesAmt
Management And General$327,914ManagementAndGeneralAmt
Fundraising$608,021FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$814,141BOYAmt
EOY$544,726EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$733,572BOYAmt
EOY$1,106,132EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$41,357BOYAmt
EOY$32,706EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$305,695LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$236,990LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$59,923BOYAmt
EOY$68,705EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$8,153,627BOYAmt
EOY$8,471,391EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$450,124BOYAmt
EOY$363,412EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$10,252,744BOYAmt
EOY$10,587,072EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$143,881BOYAmt
EOY$124,754EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$3,045,280BOYAmt
EOY$3,066,066EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$316,546BOYAmt
EOY$28,093EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$498,350BOYAmt
EOY$408,207EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$4,004,057BOYAmt
EOY$3,627,120EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$5,192,244BOYAmt
EOY$5,305,489EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,056,443BOYAmt
EOY$1,654,463EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$6,248,687BOYAmt
EOY$6,959,952EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$10,252,744BOYAmt
EOY$10,587,072EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$189,813ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$521,452NetUnrlzdGainsLossesInvstAmt
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$7,599,997CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$6,964,176CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$6,172,734CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$5,937,146CurrentTaxYearMinus1YearAmt
Current Tax Year$6,403,752CurrentTaxYearAmt
Total$33,077,805TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$7,599,997CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$6,964,176CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$6,172,734CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$5,937,146CurrentTaxYearMinus1YearAmt
Current Tax Year$6,403,752CurrentTaxYearAmt
Total$33,077,805TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,995,962SubstantialContributorsTotAmt
Public Support Total170$31,081,843PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$175,964CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$105,918CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$124,018CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$140,351CurrentTaxYearMinus1YearAmt
Current Tax Year$245,340CurrentTaxYearAmt
Total$791,591TotalAmt
FieldValueIRS element (for citing)
Total Support$33,869,396TotalSupportAmt
Gross Receipts Rltd Activities$415,047GrossReceiptsRltdActivitiesAmt
Public Support CY1700.91770PublicSupportCY170Pct
Public Support PY1700.95630PublicSupportPY170Pct
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$527,490CurrentYearMinus3Amt
Current Year Minus2$442,077CurrentYearMinus2Amt
Current Year Minus1$439,656CurrentYearMinus1Amt
Total$1,409,223TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$2,113,835LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus2$40,000CurrentYearMinus2Amt
Current Year Minus1$10,000CurrentYearMinus1Amt
Total$50,000TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$131,873CurrentYearMinus3Amt
Current Year Minus2$110,519CurrentYearMinus2Amt
Current Year Minus1$109,914CurrentYearMinus1Amt
Total$352,306TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$528,459GrassrootsCeilingAmt

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$80,655DepreciationAmt
Book Value$19,864BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$193,013OtherCostOrOtherBasisAmt
Depreciation$156,335DepreciationAmt
Book Value$36,678BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$12,163OtherCostOrOtherBasisAmt
Book Value$12,163BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$68,705TotalBookValueLandBuildingsAmt

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$408,207
FieldValueIRS element (for citing)
Total Liability$408,207TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$8,257,850TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$521,452NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$1,573,329DonatedServicesAndUseFcltsAmt
Revenue Not Reported$2,094,781RevenueNotReportedAmt
Revenue Subtotal$6,163,069RevenueSubtotalAmt
Investment Expenses Not Incld$20,094InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$20,094RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$6,183,163TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$7,546,585TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$1,573,329DonatedServicesUseFcltsAmt
Expenses Not Reported$1,573,329ExpensesNotReportedAmt
Expenses Subtotal$5,973,256ExpensesSubtotalAmt
Investment Expenses Not Incld2$20,094InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$20,094ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$5,993,350TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceX 2FormAndLineReferenceDesc
ExplanationThe Organization is a nonprofit corporation that is exempt from income taxes under Section 501c3 of the Internal Revenue Code as an entity that is not a private foundation within the meaning of section 509a and qualifies for deductible contributions as provided in section 170b1aVI. Management represents that the organization has no unrelated business income for the year ended December 31, 2023.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$529,131
East Asia and the PacificGrants to recipients in region$249,343
Middle East and North AfricaGrants to recipients in region$5,001
FieldValueIRS element (for citing)
Subtotal Spent$783,475SubtotalSpentAmt
Total Spent$783,475TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
Europe Including Iceland and GreenlandResearch Grant$519,131Wire
East Asia and the PacificResearch Grant$249,343Wire
Middle East and North AfricaConference Grant$5,001Wire
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 reports.ExplanationTxt

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1Chicago BenefitEvent1Nm
Gross Receipts Event1$2,005,029GrossReceiptsEvent1Amt
Charitable Contri Event1$1,896,235CharitableContriEvent1Amt
Gross Revenue Event1$108,794GrossRevenueEvent1Amt
Rent Facility Costs Event1$145,874RentFacilityCostsEvent1Amt
Food And Beverage Event1$187,995FoodAndBeverageEvent1Amt
Entertainment Event1$103,848EntertainmentEvent1Amt
Other Direct Expenses Event1$207,070OtherDirectExpensesEvent1Amt
Event2New York BenefitEvent2Nm
Gross Receipts Event2$285,880GrossReceiptsEvent2Amt
Charitable Contri Event2$197,680CharitableContriEvent2Amt
Gross Revenue Event2$88,200GrossRevenueEvent2Amt
Rent Facility Costs Event2$2,445RentFacilityCostsEvent2Amt
Food And Beverage Event2$14,768FoodAndBeverageEvent2Amt
Entertainment Event2$5,345EntertainmentEvent2Amt
Other Direct Expenses Event2$46,489OtherDirectExpensesEvent2Amt
Other Events Total1OtherEventsTotalCnt
Gross Receipts Other Events$674,320GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$674,320CharitableContriOtherEventsAmt
Rent Fclty Costs Other Events$3,858RentFcltyCostsOtherEventsAmt
Entertainment Other Events$20EntertainmentOtherEventsAmt
Oth Direct Expnss Other Events$55,773OthDirectExpnssOtherEventsAmt
Gross Receipts Total$2,965,229GrossReceiptsTotalAmt
Charitable Contributions Tot$2,768,235CharitableContributionsTotAmt
Gross Revenue Total Events$196,994GrossRevenueTotalEventsAmt
Rent Fclty Costs Total Events$152,177RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events$202,763FoodAndBeverageTotalEventsAmt
Entertainment Total Events$109,213EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$309,332OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$773,485DirectExpenseSummaryEventsAmt
Net Income Summary-$576,491NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (18 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
The Children's Hospital of Philadelphia
PO Box 8500PhiladelphiaPA19178232237932501C3$100,000Research Grant
University of California San Francisco
PO Box 748872Los AngelesCA90074946036493501C3$100,000Research Grant
University of Alabama
PO Box 870162TuscaloosaAL35487636001138501C3$100,000Research Grant
Northwestern University
633 Clark Street Room G-547EvanstonIL60208362167817501C3$250,000Research Grant
University of Texas Southwestern Medical Center
5323 Harry Hines Blvd MC 9029DallasTX75390746000089501C3$249,966Research Grant
Brigham and Women's Hospital
75 Francis StreetBostonMA02115042312909501C3$250,000Research Grant
St Jude Children's Research Hospital
32121 Woodward Ave Suite 350Royal OakMI48073620646012501C3$99,999Research Grant
Massachusetts General Hospital
55 Fruit StBostonMA02114041564655501C3$99,972Research Grant
Boston Children's Hospital
PO Box 414413BostonMA02241042774441501C3$100,000Research Grant
University of Maryland
PO Box 41428BaltimoreMD21203526002033501C3$99,916Research Grant
American Epilepsy Society
135 W Lasalle StChicagoIL60603046112600501C3$15,000Conference Grant
University of Utah Conferences and Events
110 Sourth Fort Douglas BlvdSalt Lake CityUT84113876000525501C3$5,000Conference Grant
Gordon Research Conferences
5568 Post Road G02East GreenwichRI02818260150662501C3$10,445Conference Grant
Gryphon Bio
611 Gateway Blvd Suite 120 253South San FranciscoCA94080825230170C-Corp$88,100Research Grant
Mid-Atlantic Sleep and Epilepsy Center
6410 Rockledge DrBethesdaMD20817300767458S-Corp$36,865Research Grant
Morehouse University
720 Westview Drive SWAtlantaGA30310580566205501C3$242,790Research Grant
Stanford University
PO Box 884253Los AngelesCA90088941156365501C3$20,609Research Grant
Mayo Clinic
PO Box 860334MinneapolisMN55486416011702501C4$9,539Research Grant
FieldValueIRS element (for citing)
Total501c3 Org15Total501c3OrgCnt
Total Other Org3TotalOtherOrgCnt

Supplemental Information Detail SupplementalInformationDetail

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

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$286,552$28,013$9,654$28,915$353,134
Laura Lubbers
Chief Scientific Officer$288,771$27,770$9,555$7,805$333,901
Alysha Biehl
Sr. Director Development$156,866$4,780$9,867$171,513

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.