CITIZENS UNITED FOR RESEARCH IN EPILEPSY: Form 990, tax year 2017

View the entire original 990 at ProPublica ↗

Organization
CITIZENS UNITED FOR RESEARCH IN EPILEPSY (EIN 36-4253176)
Tax period
2017-01-01 to 2017-12-31
Filed
2018-10-31
IRS object ID
201823049349301812
Schema version
2017v2.3
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)
Return2018-10-31T15:21:19-05:00ReturnTs
Tax Period End2017-12-31TaxPeriodEndDt

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 Line14242 SIX FORKS RD STE 1500AddressLine1Txt
CityRALEIGHCityNm
State AbbreviationNCStateAbbreviationCd
ZIP27609ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2017-01-01TaxPeriodBeginDt

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
Signature2018-10-31SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJ CALVIN MARKSPreparerPersonNm
PTINP01226973PTIN
Phone9197196400PhoneNum
Preparation2018-10-31PreparationDt

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address66.77.128.118IPv4AddressTxt
FieldValueIRS element (for citing)
IP2018-10-31IPDt
IP Tm16:20:45IPTm
IP TimezoneEDIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device IdE2AFCBC2CAC1A104CA8A10138DFED4C2A90A9C41AtSubmissionCreationDeviceId
At Submission Filing Device Id6B027F9228AF2038A75D85454ECD78232AB81595AtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2017TaxYr
Build TS2019-02-21 02:37:17ZBuildTS

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$6,571,042GrossReceiptsAmt
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 Body13VotingMembersGoverningBodyCnt
Voting Members Independent13VotingMembersIndependentCnt
Total Employee20TotalEmployeeCnt
Total Volunteers370TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$4,560,949PYContributionsGrantsAmt
CY Contributions Grants$4,103,518CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$108,198PYInvestmentIncomeAmt
CY Investment Income$184,570CYInvestmentIncomeAmt
PY Other Revenue-$236,564PYOtherRevenueAmt
CY Other Revenue-$150,858CYOtherRevenueAmt
PY Total Revenue$4,432,583PYTotalRevenueAmt
CY Total Revenue$4,137,230CYTotalRevenueAmt
PY Grants And Similar Paid$3,369,674PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$1,839,338CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$1,547,268PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,717,905CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$653,582CYTotalFundraisingExpenseAmt
PY Other Expenses$1,153,480PYOtherExpensesAmt
CY Other Expenses$991,994CYOtherExpensesAmt
PY Total Expenses$6,070,422PYTotalExpensesAmt
CY Total Expenses$4,549,237CYTotalExpensesAmt
PY Revenues Less Expenses-$1,637,839PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$412,007CYRevenuesLessExpensesAmt
Total Assets BOY$8,107,165TotalAssetsBOYAmt
Total Assets EOY$6,635,801TotalAssetsEOYAmt
Total Liabilities BOY$3,984,995TotalLiabilitiesBOYAmt
Total Liabilities EOY$2,622,628TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$4,122,170NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$4,013,173NetAssetsOrFundBalancesEOYAmt
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$3,212,219ExpenseAmt
Grant$1,839,338GrantAmt
DescISSUING OF GRANTS TO FUND RESEARCH FOR A CURE FOR EPILEPSY. SINCE ITS INCEPTION IN 1998, CURE HAS RAISED MORE THAN $60 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 MORE THAN 220 CUTTING EDGE PROJECTS IN 15 COUNTRIES.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$203,031ExpenseAmt
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$3,415,250TotalProgramServiceExpensesAmt
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 Document20IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee20EmployeeCnt
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 Members13GoverningBodyVotingMembersCnt
Independent Voting Member13IndependentVotingMemberCnt
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
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Own WebsiteYes (X)OwnWebsiteInd
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 (19 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtKey EmployeeKeyEmployeeIndHighest Compensated EmployeeHighestCompensatedEmployeeInd
SUSAN AXELROD
FOUNDING CHAIR1.00Yes (X)Yes (X)$0$0$0
ANN BENSCHOTER
CHAIR1.00Yes (X)Yes (X)$0$0$0
SHARON O'KEEFE
IMMEDIATE PAST CHAIR1.00Yes (X)Yes (X)$0$0$0
KELLY CERVANTES
DIRECTOR (FROM SEP '17)1.00Yes (X)$0$0$0
SCOTT COPELAND
DIRECTOR1.00Yes (X)$0$0$0
BLAKE CUNNEEN
DIRECTOR1.00Yes (X)$0$0$0
PHIL EMERY
DIRECTOR (TO SEP '17)1.00Yes (X)$0$0$0
LYNN FLEISHER
DIRECTOR1.00Yes (X)$0$0$0
CAROL FULP
DIRECTOR1.00Yes (X)$0$0$0
PAUL HELDMAN
DIRECTOR1.00Yes (X)$0$0$0
CELIA HUBER
DIRECTOR1.00Yes (X)$0$0$0
SCOTT LEISHER
DIRECTOR1.00Yes (X)$0$0$0
STACEY PIGOTT
DIRECTOR1.00Yes (X)$0$0$0
EVELYN NUSSENBAUM
DIRECTOR (TO SEP '17)1.00Yes (X)$0$0$0
C RENZI STONE
DIRECTOR1.00Yes (X)$0$0$0
ROBIN HARDING
CHIEF EXECUTIVE OFFICER (TO JUN '17)37.50Yes (X)$153,820$0$7,166
KATHLEEN CARR
CHIEF EXECUTIVE OFFICER (FROM JUL '17)37.50Yes (X)$145,063$0$8,055
LAURA LUBBERS
CHIEF SCIENTIFIC OFFICER37.50$263,400$0$12,708Yes (X)
BRENDA ARANDA
DIRECTOR, MARKETING & COMM37.50$150,330$0$14,526Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$712,613TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$42,455TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K4IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Fundraising$1,782,869FundraisingAmt
Government Grants$76,711GovernmentGrantsAmt
All Other Contributions$2,243,938AllOtherContributionsAmt
Total Contributions$4,103,518TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$182,025TotalRevenueColumnAmt
Exclusion$182,025ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$2,130,849SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$2,128,304SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$2,545SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,545TotalRevenueColumnAmt
Exclusion$2,545ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$154,650FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$1,782,869ContriRptFundraisingEventAmt
Fundraising Direct Expenses$305,508FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$150,858TotalRevenueColumnAmt
Exclusion-$150,858ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$4,137,230TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$33,712ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$1,757,613TotalAmt
Program Services$1,757,613ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$81,725TotalAmt
Program Services$81,725ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$590,213TotalAmt
Program Services$322,205ProgramServicesAmt
Management And General$98,279ManagementAndGeneralAmt
Fundraising$169,729FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$933,360TotalAmt
Program Services$501,463ProgramServicesAmt
Management And General$156,647ManagementAndGeneralAmt
Fundraising$275,250FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$7,760TotalAmt
Program Services$5,586ProgramServicesAmt
Management And General$1,087ManagementAndGeneralAmt
Fundraising$1,087FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$81,304TotalAmt
Program Services$58,540ProgramServicesAmt
Management And General$11,382ManagementAndGeneralAmt
Fundraising$11,382FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$105,268TotalAmt
Program Services$59,542ProgramServicesAmt
Management And General$13,043ManagementAndGeneralAmt
Fundraising$32,683FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$19,081TotalAmt
Program Services$13,739ProgramServicesAmt
Management And General$2,671ManagementAndGeneralAmt
Fundraising$2,671FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$116,307TotalAmt
Program Services$100,241ProgramServicesAmt
Management And General$8,033ManagementAndGeneralAmt
Fundraising$8,033FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$17,033TotalAmt
Program Services$17,033ProgramServicesAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$143,614TotalAmt
Program Services$34,727ProgramServicesAmt
Management And General$48,999ManagementAndGeneralAmt
Fundraising$59,888FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$128,260TotalAmt
Program Services$101,000ProgramServicesAmt
Management And General$13,630ManagementAndGeneralAmt
Fundraising$13,630FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$86,633TotalAmt
Program Services$62,377ProgramServicesAmt
Management And General$12,128ManagementAndGeneralAmt
Fundraising$12,128FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$68,925TotalAmt
Program Services$35,628ProgramServicesAmt
Management And General$32,522ManagementAndGeneralAmt
Fundraising$775FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$277,700TotalAmt
Program Services$219,646ProgramServicesAmt
Management And General$4,430ManagementAndGeneralAmt
Fundraising$53,624FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$19,974TotalAmt
Program Services$14,382ProgramServicesAmt
Management And General$2,796ManagementAndGeneralAmt
Fundraising$2,796FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$11,002TotalAmt
Program Services$7,922ProgramServicesAmt
Management And General$1,540ManagementAndGeneralAmt
Fundraising$1,540FundraisingAmt

Other Expenses OtherExpensesGrp (3 entries)

DescDescTotalTotalAmtManagement And GeneralManagementAndGeneralAmtProgram ServicesProgramServicesAmtFundraisingFundraisingAmt
BAD DEBT$65,051$65,051
DUES & SUBSCRIPTIONS$23,301$3,262$16,777$3,262
LICENSES & FEES$10,208$5,104$5,104

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$4,905TotalAmt
Management And General$4,905ManagementAndGeneralAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$4,549,237TotalAmt
Program Services$3,415,250ProgramServicesAmt
Management And General$480,405ManagementAndGeneralAmt
Fundraising$653,582FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$575,409BOYAmt
EOY$528,645EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$1,226,872BOYAmt
EOY$543,538EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$1,200,000BOYAmt
EOY$1,060,000EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$146,766BOYAmt
EOY$33,592EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$94,753BOYAmt
EOY$24,983EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$163,669LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$66,802LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$109,990BOYAmt
EOY$96,867EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$4,734,713BOYAmt
EOY$4,329,514EOYAmt

Other Assets Total OtherAssetsTotalGrp

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

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$8,107,165BOYAmt
EOY$6,635,801EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$122,173BOYAmt
EOY$57,773EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$3,297,789BOYAmt
EOY$2,076,533EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$565,033BOYAmt
EOY$488,322EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$3,984,995BOYAmt
EOY$2,622,628EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$2,234,802BOYAmt
EOY$2,254,956EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,887,368BOYAmt
EOY$1,758,217EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,122,170BOYAmt
EOY$4,013,173EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$8,107,165BOYAmt
EOY$6,635,801EOYAmt
FieldValueIRS element (for citing)
Info In Schedule O Part XIYes (X)InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss-$412,007ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$268,798NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$34,212OtherChangesInNetAssetsAmt
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$4,584,975CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$5,533,358CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$5,734,565CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,560,949CurrentTaxYearMinus1YearAmt
Current Tax Year$4,103,518CurrentTaxYearAmt
Total$24,517,365TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$4,584,975CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$5,533,358CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$5,734,565CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,560,949CurrentTaxYearMinus1YearAmt
Current Tax Year$4,103,518CurrentTaxYearAmt
Total$24,517,365TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,119,752SubstantialContributorsTotAmt
Public Support Total170$23,397,613PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$186,840CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$181,509CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$182,661CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$157,025CurrentTaxYearMinus1YearAmt
Current Tax Year$182,025CurrentTaxYearAmt
Total$890,060TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$5,293CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$8,099CurrentTaxYearMinus3YearsAmt
Total$13,392TotalAmt
FieldValueIRS element (for citing)
Total Support$25,420,817TotalSupportAmt
Gross Receipts Rltd Activities$836,700GrossReceiptsRltdActivitiesAmt
Public Support CY1700.92040PublicSupportCY170Pct
Public Support PY1700.92860PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

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$4,549,237FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$4,549,237FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$377,462FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$94,366FilingOrganizationsTotalAmt

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$484,964CurrentYearMinus3Amt
Current Year Minus2$495,953CurrentYearMinus2Amt
Current Year Minus1$453,521CurrentYearMinus1Amt
Current Year$377,462CurrentYearAmt
Total$1,811,900TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$2,717,850LobbyingCeilingAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$121,241CurrentYearMinus3Amt
Current Year Minus2$123,988CurrentYearMinus2Amt
Current Year Minus1$113,380CurrentYearMinus1Amt
Current Year$94,366CurrentYearAmt
Total$452,975TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$679,463GrassrootsCeilingAmt

Schedule D IRS990ScheduleD

Leasehold Improvements LeaseholdImprovementsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$70,127OtherCostOrOtherBasisAmt
Depreciation$13,334DepreciationAmt
Book Value$56,793BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$93,542OtherCostOrOtherBasisAmt
Depreciation$53,468DepreciationAmt
Book Value$40,074BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$96,867TotalBookValueLandBuildingsAmt
Total Rev Etc Audited Fincl Stmt$4,352,404TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$268,798NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$124,501DonatedServicesAndUseFcltsAmt
Revenue Not Reported$393,299RevenueNotReportedAmt
Revenue Subtotal$3,959,105RevenueSubtotalAmt
Other Revenues Not Included$178,125OtherRevenuesNotIncludedAmt
Revenue Not Reported Fincl Stmt$178,125RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$4,137,230TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$4,461,401TotExpnsEtcAuditedFinclStmtAmt
Prior Year Adjustments$124,501PriorYearAdjustmentsAmt
Expenses Not Reported$124,501ExpensesNotReportedAmt
Expenses Subtotal$4,336,900ExpensesSubtotalAmt
Other Expenses Not Included$212,337OtherExpensesNotIncludedAmt
Expenses Not Rpt Fincl Stmt$212,337ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$4,549,237TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART XI, LINE 4B - OTHER ADJUSTMENTS:FUNDRAISING EXPENSES 178,125.
PART XII, LINE 4B - OTHER ADJUSTMENTS:FUNDRAISING EXPENSES 178,125. RETURN GRANTS 34,212.

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp

FieldValueIRS element (for citing)
RegionEUROPERegionTxt
Offices0OfficesCnt
Employee0EmployeeCnt
Type Of Activities ConductedGRANTS TO RECIPIENTS LOCATED IN REGIONTypeOfActivitiesConductedTxt
Region Total Expenditures$81,725RegionTotalExpendituresAmt
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$81,725SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$81,725TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp

FieldValueIRS element (for citing)
RegionEUROPERegionTxt
Purpose Of GrantTAKING FLIGHTPurposeOfGrantTxt
Cash Grant$81,725CashGrantAmt
FieldValueIRS element (for citing)
Total501c3 Org1Total501c3OrgCnt
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$1,937,519GrossReceiptsEvent1Amt
Charitable Contri Event1$1,782,869CharitableContriEvent1Amt
Gross Revenue Event1$154,650GrossRevenueEvent1Amt
Non Cash Prizes Event1$5,387NonCashPrizesEvent1Amt
Rent Facility Costs Event1$74,119RentFacilityCostsEvent1Amt
Food And Beverage Event1$126,507FoodAndBeverageEvent1Amt
Entertainment Event1$66,955EntertainmentEvent1Amt
Other Direct Expenses Event1$32,540OtherDirectExpensesEvent1Amt
Gross Receipts Total$1,937,519GrossReceiptsTotalAmt
Charitable Contributions Tot$1,782,869CharitableContributionsTotAmt
Gross Revenue Total Events$154,650GrossRevenueTotalEventsAmt
Non Cash Prizes Total Events$5,387NonCashPrizesTotalEventsAmt
Rent Fclty Costs Total Events$74,119RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events$126,507FoodAndBeverageTotalEventsAmt
Entertainment Total Events$66,955EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$32,540OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$305,508DirectExpenseSummaryEventsAmt
Net Income Summary-$150,858NetIncomeSummaryAmt

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
UNIVERSITY OF WISCONSIN-MADISON
21 NORTH PARK ST STE 6401MADISONWI53715396006492501(C)(3)$250,000CURE
LIFESPLICE PHARMA
1 GREAT VALLEY PKWYMALVERNPA19355273674804$243,479TAKING FLIGHT '17
BROWN UNIVERSITY
141 ANGELL STPROVIDENCERI02912050258809501(C)(3)$220,000SLEEP & EPILEPSY
SEATTLE CHILDRENS HOSPITAL
PO BOX 5371SEATTLEWA98145910564748501(C)(3)$220,000SLEEP & EPILEPSY
BAYLOR COLLEGE OF MEDICINE
PO BOX 201361HOUSTONTX77216741613878501(C)(3)$162,149INFANTILE SPASMS
UNIVERSITY OF MICHIGAN
2727 ALLIANCE ST STE CLANSINGMI48910237326060501(C)(3)$150,000TAKING FLIGHT '17/INNOVATOR '17
EMORY UNIVERSITY
PO BOX 935084ATLANTAGA31193580566259501(C)(3)$100,000TAKING FLIGHT '17
NORTHWESTERN UNIVERSITY
633 CLARK STEVANSTONIL60208362167817501(C)(3)$100,000TAKING FLIGHT '17
UNIVERSITY OF PENNSYLVANIA
3451 WALNUT ST STE 305PHILADELPHIAPA19104231352685501(C)(3)$99,985TAKING FLIGHT '17
TUFTS UNIVERSITY
200 HARRISON AVEBOSTONMA02111042103634501(C)(3)$69,000INFANTILE SPASMS
COLUMBIA UNIVERSITY
PO BOX 28789NEW YORKNY10087135598093501(C)(3)$50,000LGSF ADDENDUM
YALE UNIVERSITY
PO BOX 2038NEW HAVENCT06521060646973501(C)(3)$50,000INNOVATOR '17
VIRGNIA TECH
902 PRICES FORK RD STE 4400BLACKSBURGVA24060540721690501(C)(3)$43,000HHMI-CURE MEDICAL FELLOW
FieldValueIRS element (for citing)
Total501c3 Org12Total501c3OrgCnt
Total Other Org1TotalOtherOrgCnt

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)
Compensation CommitteeYes (X)CompensationCommitteeInd
Independent ConsultantYes (X)IndependentConsultantInd
Written Employment ContractYes (X)WrittenEmploymentContractInd
Compensation SurveyYes (X)CompensationSurveyInd
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 (4 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountBonus Related OrganizationsBonusRelatedOrganizationsAmtOther Compensation Filing OrgOtherCompensationFilingOrgAmtOther Compensation Rltd OrgsOtherCompensationRltdOrgsAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
ROBIN HARDING
CHIEF EXECUTIVE OFFICER (TO JUN '17)$137,720$0$16,100$0$0$0$3,450$0$3,716$0$160,986$0$0$0
KATHLEEN CARR
CHIEF EXECUTIVE OFFICER (FROM JUL '1$145,063$0$0$0$0$0$1,875$0$6,180$0$153,118$0$0$0
LAURA LUBBERS
CHIEF SCIENTIFIC OFFICER$238,400$0$25,000$0$0$0$5,100$0$7,608$0$276,108$0$0$0
BRENDA ARANDA
DIRECTOR, MARKETING & COMM$150,330$0$0$0$0$0$0$0$14,526$0$164,856$0$0$0

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 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 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 AND CONFLICT OF INTEREST POLICY ARE NOT GENERALLY AVAILABLE TO THE PUBLIC. THE ORGANIZATION'S FINANCIAL STATEMENTS ARE AVAILABLE ON ITS WEBSITE.
FORM 990, PART XI, LINE 9:RETURN GRANTS 34,212.

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