CITIZENS UNITED FOR RESEARCH IN EPILEPSY: Form 990, tax year 2015

View the entire original 990 at ProPublica ↗

Organization
CITIZENS UNITED FOR RESEARCH IN EPILEPSY (EIN 36-4253176)
Tax period
2015-01-01 to 2015-12-31
Filed
2016-06-22
IRS object ID
201631749349300038
Schema version
2015v2.1
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)
Return2016-06-22T14:13:15-05:00ReturnTs
Tax Period End2015-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN521446779PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1JOHNSON LAMBERT LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line1700 SPRING FOREST RD STE 115AddressLine1Txt
CityRALEIGHCityNm
State AbbreviationNCStateAbbreviationCd
ZIP27609ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2015-01-01TaxPeriodBeginDt

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 Line1430 W ERIE NO 210AddressLine1Txt
CityCHICAGOCityNm
State AbbreviationILStateAbbreviationCd
ZIP60654ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonROBIN HARDINGPersonNm
Person TitleCHIEF EXECUTIVE OFFICERPersonTitleTxt
Phone3122551801PhoneNum
Signature2016-06-22SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJOHN HUSKINSPreparerPersonNm
PTINP01081531PTIN
Phone9197196400PhoneNum
Preparation2016-06-22PreparationDt
FieldValueIRS element (for citing)
Tax2015TaxYr
Build TS2016-09-27 15:27:22ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerROBIN HARDINGPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1430 W ERIE NO 210AddressLine1Txt
CityCHICAGOCityNm
State AbbreviationILStateAbbreviationCd
ZIP60654ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$6,115,976GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.CUREEPILEPSY.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1998FormationYr
Legal Domicile StateILLegalDomicileStateCd
Activity Or MissionCURE'S MISSION IS TO CURE EPILEPSY, TRANSFORMING AND SAVING MILLIONS OF LIVES. WE IDENTIFY AND FUND CUTTING-EDGE RESEARCH, CHALLENGING SCIENTISTS WORLDWIDE TO COLLABORATE AND INNOVATE IN PURSUIT OF THIS GOAL. OUR COMMITMENT IS UNRELENTING.ActivityOrMissionDesc
Voting Members Governing Body15VotingMembersGoverningBodyCnt
Voting Members Independent15VotingMembersIndependentCnt
Total Employee17TotalEmployeeCnt
Total Volunteers370TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$5,533,358PYContributionsGrantsAmt
CY Contributions Grants$5,734,565CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$186,204PYInvestmentIncomeAmt
CY Investment Income$182,661CYInvestmentIncomeAmt
PY Other Revenue-$329,404PYOtherRevenueAmt
CY Other Revenue-$281,802CYOtherRevenueAmt
PY Total Revenue$5,390,158PYTotalRevenueAmt
CY Total Revenue$5,635,424CYTotalRevenueAmt
PY Grants And Similar Paid$4,832,430PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$4,452,139CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$752,661PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,307,742CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$384,798CYTotalFundraisingExpenseAmt
PY Other Expenses$1,114,187PYOtherExpensesAmt
CY Other Expenses$1,159,185CYOtherExpensesAmt
PY Total Expenses$6,699,278PYTotalExpensesAmt
CY Total Expenses$6,919,066CYTotalExpensesAmt
PY Revenues Less Expenses-$1,309,120PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$1,283,642CYRevenuesLessExpensesAmt
Total Assets BOY$9,967,864TotalAssetsBOYAmt
Total Assets EOY$8,986,158TotalAssetsEOYAmt
Total Liabilities BOY$2,952,799TotalLiabilitiesBOYAmt
Total Liabilities EOY$3,728,037TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$7,015,065NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$5,258,121NetAssetsOrFundBalancesEOYAmt
MissionCITIZENS UNITED FOR RESEARCH IN EPILEPSY IS DEDICATED TO FINDING A CURE FOR EPILEPSY BY RAISING FUNDS FOR RESEARCH AND BY INCREASING AWARENESS OF THE PREVALENCE AND DEVASTATION OF THIS DISEASE.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$6,056,940ExpenseAmt
Grant$4,452,139GrantAmt
DescISSUING OF GRANTS TO FUND RESEARCH FOR A CURE FOR EPILEPSY. SINCE ITS INCEPTION IN 1998, CURE HAS RAISED MORE THAN $43 MILLION TO FUND EPILEPSY RESEARCH PROJECTS AND OTHER INITIATIVES THAT WILL LEAD THE WAY TO A CURE. CURE AWARDS SEED GRANTS FOR NOVEL RESEARCH PROJECTS THAT ADDRESS THE GOALS OF "NO SEIZURES, NO SIDE EFFECTS." THESE GRANTS ALLOW NEW AND ESTABLISHED INVESTIGATORS TO EXPLORE NEW INNOVATIVE AREAS AND COLLECT THE DATA NECESSARY TO APPLY FOR FURTHER FUNDING BY THE NATIONAL INSTITUTES OF HEALTH (NIH). TO DATE, CURE HAS AWARDED FUNDING FOR OVER 190 CUTTING EDGE PROJECTS IN 15 COUNTRIES.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$145,790ExpenseAmt
DescCURE SPONSORS SCIENTIFIC CONFERENCES THAT ARE WORKING TO BRING THE BRIGHTEST MINDS TOGETHER TO DISCUSS SOME OF OUR BIGGEST AND MOST IMPORTANT ISSUES, DRIVING AWARENESS OF THE PREVALENCE AND DEVASTATION OF EPILEPSY THROUGH THE FRONTIERS IN RESEARCH SEMINAR SERIES. CURE BELIEVES THAT AWARENESS IS A NECESSARY VEHICLE TO INCREASE THE AMOUNT OF FUNDING FOR BASIC RESEARCH TOWARD A CURE FOR EPILEPSY.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$6,202,730TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying ActivitiesYes (1)LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Temp Or Permanent Endowments0TempOrPermanentEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 Footnote0IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With Officer Ent0BusinessRlnWithOfficerEntInd
Deductible Non Cash Contri0DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document22IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee17EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo ContributionsYes (1)QuidProQuoContributionsInd
Quid Pro Quo Contri DisclYes (1)QuidProQuoContriDisclInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members15GoverningBodyVotingMembersCnt
Independent Voting Member15IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process Other0CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
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Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1ROBIN HARDINGBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone3122551801PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1430 W ERIE NO 210AddressLine1Txt
CityCHICAGOCityNm
State AbbreviationILStateAbbreviationCd
ZIP60654ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (16 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmt
SUSAN AXELROD
FOUNDING CHAIR1.00Yes (X)Yes (X)$0$0$0
SHARON O'KEEFE
CHAIR1.00Yes (X)Yes (X)$0$0$0
GARDINER LAPHAM
IMMEDIATE PAST CHAIR1.00Yes (X)Yes (X)$0$0$0
ANN BENSCHOTER
SECRETARY1.00Yes (X)Yes (X)$0$0$0
PAUL HELDMAN
TREASURER1.00Yes (X)Yes (X)$0$0$0
BLAKE CUNNEEN
DIRECTOR (FROM SEP '15)1.00Yes (X)$0$0$0
PHIL EMERY
DIRECTOR1.00Yes (X)$0$0$0
LYNN FLEISHER
DIRECTOR (FROM SEP '15)1.00Yes (X)$0$0$0
CAROL FULP
DIRECTOR1.00Yes (X)$0$0$0
SCOTT LEISHER
DIRECTOR1.00Yes (X)$0$0$0
GREG LEWIS
DIRECTOR1.00Yes (X)$0$0$0
JOEL MARCUS
DIRECTOR1.00Yes (X)$0$0$0
CONNIE MILSTEIN
DIRECTOR1.00Yes (X)$0$0$0
EVELYN NUSSENBAUM
DIRECTOR1.00Yes (X)$0$0$0
C RENZI STONE
DIRECTOR1.00Yes (X)$0$0$0
ROBIN HARDING
CHIEF EXECUTIVE OFFICER37.50Yes (X)$244,507$0$17,287
FieldValueIRS element (for citing)
Total Reportable Comp From Org$244,507TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$17,287TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Fundraising$2,372,640FundraisingAmt
Government Grants$67,290GovernmentGrantsAmt
All Other Contributions$3,294,635AllOtherContributionsAmt
Total Contributions$5,734,565TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$182,661TotalRevenueColumnAmt
Exclusion$182,661ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$198,750FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$2,372,640ContriRptFundraisingEventAmt
Fundraising Direct Expenses$480,552FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$281,802TotalRevenueColumnAmt
Exclusion-$281,802ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$5,635,424TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion-$99,141ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$3,468,939TotalAmt
Program Services$3,468,939ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$983,200TotalAmt
Program Services$983,200ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$261,794TotalAmt
Program Services$188,492ProgramServicesAmt
Management And General$36,651ManagementAndGeneralAmt
Fundraising$36,651FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$858,616TotalAmt
Program Services$618,202ProgramServicesAmt
Management And General$120,207ManagementAndGeneralAmt
Fundraising$120,207FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$9,552TotalAmt
Program Services$6,878ProgramServicesAmt
Management And General$1,337ManagementAndGeneralAmt
Fundraising$1,337FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$110,587TotalAmt
Program Services$79,623ProgramServicesAmt
Management And General$15,482ManagementAndGeneralAmt
Fundraising$15,482FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$67,193TotalAmt
Program Services$48,379ProgramServicesAmt
Management And General$9,407ManagementAndGeneralAmt
Fundraising$9,407FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$13,390TotalAmt
Program Services$9,640ProgramServicesAmt
Management And General$1,875ManagementAndGeneralAmt
Fundraising$1,875FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$256,862TotalAmt
Program Services$184,940ProgramServicesAmt
Management And General$35,961ManagementAndGeneralAmt
Fundraising$35,961FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$17,920TotalAmt
Program Services$17,920ProgramServicesAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$151,385TotalAmt
Program Services$66,862ProgramServicesAmt
Management And General$43,518ManagementAndGeneralAmt
Fundraising$41,005FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$103,550TotalAmt
Program Services$84,188ProgramServicesAmt
Management And General$9,681ManagementAndGeneralAmt
Fundraising$9,681FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$82,902TotalAmt
Program Services$58,106ProgramServicesAmt
Management And General$13,498ManagementAndGeneralAmt
Fundraising$11,298FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$66,836TotalAmt
Program Services$43,696ProgramServicesAmt
Management And General$22,703ManagementAndGeneralAmt
Fundraising$437FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$410,274TotalAmt
Program Services$306,297ProgramServicesAmt
Management And General$15,278ManagementAndGeneralAmt
Fundraising$88,699FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$12,769TotalAmt
Program Services$9,193ProgramServicesAmt
Management And General$1,788ManagementAndGeneralAmt
Fundraising$1,788FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$9,944TotalAmt
Program Services$7,160ProgramServicesAmt
Management And General$1,392ManagementAndGeneralAmt
Fundraising$1,392FundraisingAmt

Other Expenses OtherExpensesGrp (2 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
DUES & SUBSCRIPTIONS$19,717$14,197$2,760$2,760
LICENSES & FEES$13,636$6,818$0$6,818

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$6,919,066TotalAmt
Program Services$6,202,730ProgramServicesAmt
Management And General$331,538ManagementAndGeneralAmt
Fundraising$384,798FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,094,588BOYAmt
EOY$571,866EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$3,638,131BOYAmt
EOY$2,646,206EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$420,000BOYAmt
EOY$1,110,000EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$78,086BOYAmt
EOY$180,690EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$40,602BOYAmt
EOY$52,980EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$154,320LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$26,627LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$45,338BOYAmt
EOY$127,693EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$4,632,455BOYAmt
EOY$4,278,061EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$18,664BOYAmt
EOY$18,662EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$9,967,864BOYAmt
EOY$8,986,158EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$132,851BOYAmt
EOY$68,302EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$2,819,948BOYAmt
EOY$3,659,735EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$2,952,799BOYAmt
EOY$3,728,037EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$6,245,065BOYAmt
EOY$3,328,014EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$770,000BOYAmt
EOY$1,930,107EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$7,015,065BOYAmt
EOY$5,258,121EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$9,967,864BOYAmt
EOY$8,986,158EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$1,283,642ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$473,302NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

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$2,000,856CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$5,517,115CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,584,975CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$5,533,358CurrentTaxYearMinus1YearAmt
Current Tax Year$5,734,565CurrentTaxYearAmt
Total$23,370,869TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$2,000,856CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$5,517,115CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,584,975CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$5,533,358CurrentTaxYearMinus1YearAmt
Current Tax Year$5,734,565CurrentTaxYearAmt
Total$23,370,869TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,380,472SubstantialContributorsTotAmt
Public Support Total170$21,990,397PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$204,428CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$150,303CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$186,840CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$181,509CurrentTaxYearMinus1YearAmt
Current Tax Year$182,661CurrentTaxYearAmt
Total$905,741TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,482CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$5,417CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$5,293CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$8,099CurrentTaxYearMinus1YearAmt
Total$20,291TotalAmt
FieldValueIRS element (for citing)
Total Support$24,296,901TotalSupportAmt
Gross Receipts Rltd Activities$3,037,245GrossReceiptsRltdActivitiesAmt
Public Support CY1700.90510PublicSupportCY170Pct
Public Support PY1700.92740PublicSupportPY170Pct
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

Total Grassroots Lobbying TotalGrassrootsLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$6,919,066FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$6,919,066FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$495,953FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$123,988FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$400,421CurrentYearMinus3Amt
Current Year Minus2$376,531CurrentYearMinus2Amt
Current Year Minus1$484,964CurrentYearMinus1Amt
Current Year$495,953CurrentYearAmt
Total$1,757,869TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$2,636,804LobbyingCeilingAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$100,105CurrentYearMinus3Amt
Current Year Minus2$94,133CurrentYearMinus2Amt
Current Year Minus1$121,241CurrentYearMinus1Amt
Current Year$123,988CurrentYearAmt
Total$439,467TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$659,201GrassrootsCeilingAmt

Schedule D IRS990ScheduleD

Leasehold Improvements LeaseholdImprovementsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$68,862OtherCostOrOtherBasisAmt
Depreciation$4,089DepreciationAmt
Book Value$64,773BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$85,458OtherCostOrOtherBasisAmt
Depreciation$22,538DepreciationAmt
Book Value$62,920BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$127,693TotalBookValueLandBuildingsAmt
Total Rev Etc Audited Fincl Stmt$5,085,078TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst-$473,302NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$11,655DonatedServicesAndUseFcltsAmt
Revenue Not Reported-$461,647RevenueNotReportedAmt
Revenue Subtotal$5,546,725RevenueSubtotalAmt
Other Revenues Not Included$88,699OtherRevenuesNotIncludedAmt
Revenue Not Reported Fincl Stmt$88,699RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$5,635,424TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$6,842,022TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$11,655DonatedServicesUseFcltsAmt
Expenses Not Reported$11,655ExpensesNotReportedAmt
Expenses Subtotal$6,830,367ExpensesSubtotalAmt
Other Expenses Not Included$88,699OtherExpensesNotIncludedAmt
Expenses Not Rpt Fincl Stmt$88,699ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$6,919,066TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART XI, LINE 4B - OTHER ADJUSTMENTS:FUNDRAISING EXPENSES 88,699.
PART XII, LINE 4B - OTHER ADJUSTMENTS:FUNDRAISING EXPENSES 88,699.

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)

RegionRegionTxtOfficesOfficesCntEmployeeEmployeeCntType Of Activities ConductedTypeOfActivitiesConductedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
EUROPE00GRANTS TO RECIPIENTS LOCATED IN REGION$483,700
EAST ASIA AND THE PACIFIC00GRANTS TO RECIPIENTS LOCATED IN REGION$499,500
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continutation Total Office0ContinutationTotalOfficeCnt
Continutation Total Employee0ContinutationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$983,200SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$983,200TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (4 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmt
EUROPELGI1 AUTOANTIPODIES AS A CAUSE AND THERAPEUTIC TARGET FOR SEIZURE CONTROL$234,400
EUROPEHMGB1 AS A TARGET AND A MECHANISTIC BIOMARKER OF EPILEPTOGENESIS$249,300
EAST ASIA AND THE PACIFICA NOVEL THERAPEUTIC INTERVENTION FOR DRAVET SYNDROME$249,500
EAST ASIA AND THE PACIFICMOLECULAR GENETIC DECODING OF BRAIN SOMATIC MUTATIONS IN INTRACTABLE PEDIATRIC EPILEPSIES$250,000
FieldValueIRS element (for citing)
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationGRANTEES ARE REQUIRED TO MAKE PERIODIC PROGRESS REPORTS.ExplanationTxt

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1CHICAGO GALA BENEFITEvent1Nm
Gross Receipts Event1$2,071,331GrossReceiptsEvent1Amt
Charitable Contri Event1$1,906,331CharitableContriEvent1Amt
Gross Revenue Event1$165,000GrossRevenueEvent1Amt
Rent Facility Costs Event1$68,811RentFacilityCostsEvent1Amt
Other Direct Expenses Event1$341,299OtherDirectExpensesEvent1Amt
Event2NEW YORKEvent2Nm
Gross Receipts Event2$271,559GrossReceiptsEvent2Amt
Charitable Contri Event2$249,059CharitableContriEvent2Amt
Gross Revenue Event2$22,500GrossRevenueEvent2Amt
Other Direct Expenses Event2$66,010OtherDirectExpensesEvent2Amt
Other Events Total1OtherEventsTotalCnt
Gross Receipts Other Events$228,500GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$217,250CharitableContriOtherEventsAmt
Gross Revenue Other Events$11,250GrossRevenueOtherEventsAmt
Oth Direct Expnss Other Events$4,432OthDirectExpnssOtherEventsAmt
Gross Receipts Total$2,571,390GrossReceiptsTotalAmt
Charitable Contributions Tot$2,372,640CharitableContributionsTotAmt
Gross Revenue Total Events$198,750GrossRevenueTotalEventsAmt
Rent Fclty Costs Total Events$68,811RentFcltyCostsTotalEventsAmt
Oth Direct Expnss Total Events$411,741OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$480,552DirectExpenseSummaryEventsAmt
Net Income Summary-$281,802NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Recipient Table RecipientTable (13 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
COLUMBIA UNIVERSITY
PO BOX 28789NEW YORKNY10087135598093501(C)(3)$778,173TARGETING THE MTOR PATHWAY IN GLIOMA-ASSOCIATED EPILEPSY IN MICE AND HUMANS; CURE EPILEPSY GENETICS REPOSITORS (EGI)
BAYLOR COLLEGE OF MEDICINE
PO BOX 201361HOUSTONTX77216741613878501(C)(3)$512,038INFANTILE SPASMS: MECHANISMS AND CONSEQUENCES AS THERAPEUTIC TARGETS; PILOT IN SILICO MORTALITY RISK ATTRIBUTION IN SUDY
WEILL MEDICAL COLLEGE OF CORNELL
1300 YORK AVENEW YORKNY10065131623978501(C)(3)$500,000REGULATION OF CORTICAL INTERNEURON MIGRATION AND EPILEPSY
ALBERT EINSTEIN COLLEGE
1300 MORRIS PARK AVEBRONXNY10461131624225501(C)(3)$253,595IDENTIFYING NEW THERAPIES FOR INFANTILE SPASMS
BETH ISRAEL DEACONESS MEDICAL CENTER
330 BROOKLINE AVEBOSTONMA02215104210338501(C)(3)$250,000MEASURING AND MODIFYING CORTICAL HYPEREXCITABILITY IN PATIENTS AT HIGH RISK FOR ACQUIRED EPILEPSY
LOUISIANA STATE UNIVERSITY HEALTH CENTER
1501 KINGS HIGHWAYSHREVEPORTLA71103770702002501(C)(3)$250,000EMPLOYMENT OF IN VIVO BIOSIGNAL DYNAMICS AS BIOMARKERS OF SUDEP.
UNIVERSITY OF MICHIGAN
BOX 223131PITTSBURGHPA15251386006309501(C)(3)$250,000PATIENT-SPECIFIC INDUCED PLURIPOTENT STEM CELL CARDIAC MYOCYTES AS PREDICTORS OF SUDEP RISK
TEXAS A&M
400 HARVEY MITCHELL PARKWAY SOUTHCOLLEGE STATIONTX77845742907553501(C)(3)$249,453THE CONTRIBUTIONS OF CD74 TO ACQUIRED EPILEPSY. DR. NEWELL-ROGERS
UNIVERSITY OF WASHINGTON
12455 COLLECTIONS DRSEATTLEWA60693605799469501(C)(3)$125,000MECHANISM OF ANTI-EPILEPTIC ACTION OF CANNABIDIOL IN A MOUSE MODEL OF DRAVET SYNDROME
UNIVERSITY OF COLORADO DENVER
PO BOX 910238DENVERCO80291846000555501(C)(3)$102,985METABOLOMIC BIOMARKER DISCOVERY IN INFANTILE SPAMS
PENNSYLVANIA STATE UNIVERSITY
227 W BEAVER AVESTATE COLLEGEPA16801246000376501(C)(3)$100,000A MURINE MODEL FOR PREVENTING POSTMALARIAL EPILEPSY
TUFTS UNIVERSITY
200 HARRISON AVEBOSTONMA02111042103634501(C)(3)$95,000APC CKO MOUSE AS A NEW MODEL OF INFANTILE SPASMS
UNIVERSITY OF CALIFORNIA
1855 FOLSOM STREETSAN FRANCISCOCA94143946036493501(C)(3)$75,000CLINICAL AND GENETIC PREDICTORS OF OUTCOMES AND THERAPEUTIC INSIGHTS
FieldValueIRS element (for citing)
Total501c3 Org13Total501c3OrgCnt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationGRANTEES ARE REQUIRED TO MAKE PERIODIC PROGRESS REPORTS.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org0CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org0CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp

FieldValueIRS element (for citing)
PersonROBIN HARDINGPersonNm
TitleCHIEF EXECUTIVE OFFICERTitleTxt
Base Compensation Filing Org$230,000BaseCompensationFilingOrgAmt
Compensation Based On Rltd Orgs$0CompensationBasedOnRltdOrgsAmt
Bonus Filing Organization$14,507BonusFilingOrganizationAmount
Bonus Related Organizations$0BonusRelatedOrganizationsAmt
Other Compensation Filing Org$0OtherCompensationFilingOrgAmt
Other Compensation Rltd Orgs$0OtherCompensationRltdOrgsAmt
Deferred Compensation Flng Org$6,900DeferredCompensationFlngOrgAmt
Deferred Comp Rltd Orgs$0DeferredCompRltdOrgsAmt
Nontaxable Benefits Filing Org$10,387NontaxableBenefitsFilingOrgAmt
Nontaxable Benefits Rltd Orgs$0NontaxableBenefitsRltdOrgsAmt
Total Compensation Filing Org$261,794TotalCompensationFilingOrgAmt
Total Compensation Rltd Orgs$0TotalCompensationRltdOrgsAmt
Comp Report Prior990 Filing Org$0CompReportPrior990FilingOrgAmt
Comp Report Prior990 Rltd Orgs$0CompReportPrior990RltdOrgsAmt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (4 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION B, LINE 11FORM 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 B, LINE 15ACOMPARABLE SALARY INFORMATION IS OBTAINED AND REVIEWED USING AN OUTSIDE EXECUTIVE SEARCH FIRM. THE BOARD OF DIRECTORS HAS FINAL APPROVAL, AND REVIEWS COMPENSATION ANNUALLY.
FORM 990, PART VI, SECTION C, LINE 19GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS ARE NOT GENERALLY AVAILABLE TO THE PUBLIC.

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