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FAMILIES OF SMA: Form 990, tax year 2015

View the entire original 990 at ProPublica ↗

Organization
FAMILIES OF SMA (EIN 36-3320440)
Tax period
2015-07-01 to 2016-06-30
Filed
2016-10-24
IRS object ID
201642989349301214
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)
Return2016-10-24T15:14:48-05:00ReturnTs
Tax Period End2016-06-30TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN591818353PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1KAUFMAN ROSSIN & CO PABusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line12699 S BAYSHORE DRIVEAddressLine1Txt
CityMIAMICityNm
State AbbreviationFLStateAbbreviationCd
ZIP33133ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2015-07-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN363320440EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1FAMILIES OF SPINAL MUSCULAR ATROPHYBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlFAMIBusinessNameControlTxt
Phone8008861762PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1925 BUSSE ROADAddressLine1Txt
CityELK GROVE VILLAGECityNm
State AbbreviationILStateAbbreviationCd
ZIP60007ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonKENNETH HOBBYPersonNm
Person TitlePRESIDENTPersonTitleTxt
Phone8008861762PhoneNum
Signature2016-10-21SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJANET FIFERPreparerPersonNm
PTINP01225772PTIN
Phone3058585600PhoneNum
Preparation2016-10-21PreparationDt
FieldValueIRS element (for citing)
Tax2015TaxYr
Build TS2017-02-10 21:41:12ZBuildTS

Form 990 IRS990

Doing Business As Name DoingBusinessAsName

FieldValueIRS element (for citing)
Business Name Line1CURE SMABusinessNameLine1Txt
FieldValueIRS element (for citing)
Principal OfficerKENNETH HOBBYPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1925 BUSSE ROADAddressLine1Txt
CityELK GROVE VILLAGECityNm
State AbbreviationILStateAbbreviationCd
ZIP60007ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$6,874,271GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.CURESMA.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1984FormationYr
Legal Domicile StateILLegalDomicileStateCd
Activity Or MissionCURE SMA LEADS THE WAY TO A WORLD WITHOUT SPINAL MUSCULAR ATROPHY, THE NUMBER ONE GENETIC CAUSE OF DEATH FOR INFANTS. CURE SMA FUNDS AND DIRECTS COMPREHENSIVE RESEARCH THAT DRIVES BREAKTHROUGHS IN TREATMENT AND CARE, AND PROVIDES FAMILIES THE SUPPORT THEY NEED FOR TODAY.ActivityOrMissionDesc
Voting Members Governing Body15VotingMembersGoverningBodyCnt
Voting Members Independent14VotingMembersIndependentCnt
Total Employee23TotalEmployeeCnt
Total Volunteers5750TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$4,716,073PYContributionsGrantsAmt
CY Contributions Grants$5,149,322CYContributionsGrantsAmt
PY Program Service Revenue$403,981PYProgramServiceRevenueAmt
CY Program Service Revenue$815,371CYProgramServiceRevenueAmt
PY Investment Income$18,312PYInvestmentIncomeAmt
CY Investment Income-$6,037CYInvestmentIncomeAmt
PY Other Revenue$98,289PYOtherRevenueAmt
CY Other Revenue$151,130CYOtherRevenueAmt
PY Total Revenue$5,236,655PYTotalRevenueAmt
CY Total Revenue$6,109,786CYTotalRevenueAmt
PY Grants And Similar Paid$1,339,999PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$1,219,840CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$1,570,338PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,747,547CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$18,809PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$24,159CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$937,681CYTotalFundraisingExpenseAmt
PY Other Expenses$2,466,129PYOtherExpensesAmt
CY Other Expenses$2,875,998CYOtherExpensesAmt
PY Total Expenses$5,395,275PYTotalExpensesAmt
CY Total Expenses$5,867,544CYTotalExpensesAmt
PY Revenues Less Expenses-$158,620PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$242,242CYRevenuesLessExpensesAmt
Total Assets BOY$3,255,155TotalAssetsBOYAmt
Total Assets EOY$3,916,800TotalAssetsEOYAmt
Total Liabilities BOY$1,193,942TotalLiabilitiesBOYAmt
Total Liabilities EOY$1,601,166TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$2,061,213NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$2,315,634NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionCURE SMA FUNDS AND DIRECTS THE LEADING SMA RESEARCH PROGRAMS TO DEVELOP A TREATMENT AND CURE FOR THE DISEASE. THE SUCCESSFUL RESULTS AND PROGRESS THAT THE ORGANIZATION HAS DELIVERED, FROM BASIC RESEARCH TO DRUG DISCOVERY TO CLINICAL TRIALS, PROVIDE REAL HOPE FOR FAMILIES AND PATIENTS IMPACTED BY THE DISEASE. THE CHARITY HAS INVESTED OVER $60 MILLION IN RESEARCH AND HAS BEEN INVOLVED IN FUNDING HALF OF ALL THE ONGOING NOVEL DRUG PROGRAMS FOR SMA. CURE SMA IS A NONPROFIT 501(C)3 ORGANIZATION, WITH 34 CHAPTERS AND 115,000 MEMBERS AND SUPPORTERS THROUGHOUT THE UNITED STATES, AND IS DEDICATED TO CREATING A TREATMENT AND CURE BY: FUNDING AND ADVANCING A COMPREHENSIVE RESEARCH PROGRAM; SUPPORTING SMA FAMILIES THROUGH NETWORKING, INFORMATION AND SERVICES; IMPROVING CARE FOR ALL SMA PATIENTS; EDUCATING HEALTHCARE PROFESSIONALS AND THE PUBLIC ABOUT SMA; ENLISTING GOVERNMENT SUPPORT FOR SMA; EMBRACING ALL TOUCHED BY SMA IN A CARING COMMUNITY.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$662,833ExpenseAmt
DescINDIVIDUALS WITH SMA NEED SPECIALIZED CARE AND EQUIPMENT, WHICH CAN PUT ENORMOUS EMOTIONAL, LOGISTICAL, AND FINANCIAL PRESSURE ON FAMILIES. CURE SMA IS COMMITTED TO MAKING SURE THAT FAMILIES HAVE THE BEST, MOST ACCURATE INFORMATION ABOUT SMA AND WHAT IT MEANS FOR THEM, AND TO MAKING SURE THAT THEY UNDERSTAND ALL THE OPTIONS AND RESOURCES AVAILABLE TO THEM FROM DAY TO DAY CARE TO THE CHANGING LANDSCAPE OF RESEARCH BREAKTHROUGHS.THIS INCLUDES OUR CARE SERIES BOOKLETS, WHICH ARE SENT OUT AS PART OF INFORMATIONAL PACKETS AVAILABLE AT NO COST TO ANYONE WHO REQUESTS ONE. DEVELOPED BY MEDICAL EXPERTS AND REVIEWED BY FAMILIES, THESE BOOKLETS COVER TOPICS SUCH AS BREATHING, NUTRITION, PALLIATIVE CARE, GENETICS, MUSCULOSKELETAL ISSUES, AND MORE. IN ADDITION, OUR EQUIPMENT POOL GIVES FAMILIES ACCESS TO SPECIALIZED ITEMS LIKE CAR BEDS, STROLLERS AND BATHING SYSTEMS AT NO COST. EVERY NEWLY DIAGNOSED FAMILY RECEIVES A CARE PACKAGE FROM CURE SMA, FULL OF TOYS APPROPRIATE TO THE CHILD'S TYPE OF THE DISEASE, IMPARTIAL INFORMATION FOR PARENTS, AND USEFUL ITEMS SUGGESTED BY OTHER SMA PARENTS BASED ON THEIR OWN EXPERIENCES.CURE SMA ALSO EDUCATES THE PUBLIC ABOUT SMA, TO STRENGTHEN THE SUPPORT AVAILABLE TO FAMILIES. THIS INCLUDES DIRECTIONS, A BIANNUAL FAMILY SUPPORT NEWSLETTER, AND COMPASS, A QUARTERLY UPDATE ON RESEARCH DEVELOPMENTS.CURE SMA WORKS DIRECTLY WITH CLINICIANS, MEDICAL DOCTORS, SPECIALISTS, AND SKILLED CAREGIVERS TO ENSURE THAT PATIENTS HAVE ACCESS TO THE BEST POSSIBLE CARE.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$2,112,946ExpenseAmt
Grant$1,219,840GrantAmt
DescCURE SMA FOCUSES ON THREE DIFFERENT YET EQUALLY CRITICAL AND INTERDEPENDENT RESEARCH AREAS: BASIC RESEARCH, TO UNDERSTAND THE CAUSE AND BIOLOGY OF SMA; DRUG DISCOVERY, TO CONVERT BASIC RESEARCH IDEAS INTO PRACTICAL NEW DRUG CANDIDATES; AND CLINICAL TRIALS, TO TEST THE DRUG CANDIDATES. CURE SMA ALSO FUNDS CLINICAL CARE RESEARCH TO UNDERSTAND THE ISSUES THAT AFFECT DAILY LIFE FOR PEOPLE WITH SMA, FROM BREATHING TO NUTRITION, AND TO IMPROVE THEIR QUALITY OF LIFE TODAY. CURRENTLY, THERE ARE 18 DRUG PROGRAMS IN DEVELOPMENT, AND SIX OF THOSE ARE IN CLINICAL TRIALS. CURE SMA HAS FUNDED HALF OF ALL THE ONGOING DRUG PROGRAMS IN SMA, INCLUDING FUNDING FOR SIX DRUG PROGRAMS THIS YEAR.THROUGH SURVEYS, FOCUS GROUPS, AND DIRECT MEETINGS WITH THE FDA, CURE SMA IS WORKING TO PURSUE TIMELY AND SAFE APPROVAL OF SMA DRUGS BY THE FDA, ONCE CLINICAL TRIALS HAVE BEEN COMPLETED FOR THE DRUGS NOW IN DEVELOPMENT. THIS INCLUDES MAKING SURE THE PATIENT PERSPECTIVE IS PROPERLY REPRESENTED TO THE FDA ON TOPICS LIKE RISK/BENEFIT ANALYSIS, AND MEANINGFUL CHANGE. CURE SMA ALSO RELEASED "LEARNING ABOUT CLINICAL TRIALS", A NEW GUIDEBOOK TO EDUCATE THE PATIENT AND MEDICAL PROVIDER COMMUNITY ON THE CLINICAL TRIAL PROCESS.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$1,870,868ExpenseAmt
Revenue$815,371RevenueAmt
DescCURE SMA HOSTED OUR 27TH ANNUAL SMA CONFERENCE IN ANAHEIM, CA, WITH OVER 1,500 TOTAL ATTENDEES. OUR ANNUAL CONFERENCE IS AN INVALUABLE RESOURCE FOR THE ENTIRE SMA COMMUNITY, BRINGING TOGETHER RESEARCHERS, CLINICIANS, AND FAMILIES TO NETWORK, LEARN, AND COLLABORATE. THE CONFERENCE IS THE LARGEST IN THE WORLD FOCUSED SPECIFICALLY ON SMA, AND IT ATTRACTS THE TOP SCIENTISTS AND COMPANIES IN THE FIELD. THE FAMILY CONFERENCE INCLUDES A VARIETY OF WORKSHOPS, KEYNOTE SESSIONS WITH LEADING RESEARCHERS, A FAMILY FRIENDLY RESEARCH POSTER SESSION, AND MORE PLUS FUN EVENTS LIKE OUR DANCE PARTY, MEET AND GREET, PAJAMA PARTY AND MOVIE NIGHT, AND TEEN AND ADULT SOCIAL ACTIVITIES. THE RESEARCHER CONFERENCE CREATES OPEN COMMUNICATION OF EARLY, UNPUBLISHED SCIENTIFIC DATA, ACCELERATING THE PACE OF RESEARCH. THE MEETING ALSO FURTHERS RESEARCH BY BUILDING PRODUCTIVE COLLABORATIONS INCLUDING CROSS DISCIPLINARY DIALOGUE, PARTNERSHIPS, INTEGRATION OF NEW RESEARCHERS AND DRUG COMPANIES, AND EDUCATIONAL OPPORTUNITIES FOR JUNIOR RESEARCHERS.THE MOST POWERFUL ACTIVITIES OF THE CONFERENCE HAPPEN WHEN THE FAMILY AND RESEARCHER CONFERENCES COME TOGETHER. FAMILIES HAVE DIRECT ACCESS TO THE LATEST INFORMATION ABOUT RESEARCH, AND RESEARCHERS HAVE AN OPPORTUNITY TO BUILD PERSONAL CONNECTIONS WITH THE PATIENTS WHO WILL BENEFIT FROM THEIR WORK.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$4,646,647TotalProgramServiceExpensesAmt
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 EndowmentsYes (1)TempOrPermanentEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (1)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign Activities0ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional FundraisingYes (1)ProfessionalFundraisingInd
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 ContriYes (1)DeductibleNonCashContriInd
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 Document33IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee23EmployeeCnt
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 Member14IndependentVotingMemberCnt
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 ChaptersYes (1)LocalChaptersInd
Policies Reference ChaptersYes (1)PoliciesReferenceChaptersInd
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 OtherYes (1)CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldAZStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCOStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldIAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldLAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTXStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldAKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldUTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMEStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldDEStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldHIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldIDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldINStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNEStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNMStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMOStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldRIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldDCStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1KENNETH HOBBYBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone8008861762PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1925 BUSSE ROADAddressLine1Txt
CityELK GROVE VILLAGECityNm
State AbbreviationILStateAbbreviationCd
ZIP60007ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (18 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeInd
RICHARD RUBENSTEIN
BOARD CHAIR15.00Yes (X)Yes (X)$0$0$0
KENNETH HOBBY
PRESIDENT70.00Yes (X)Yes (X)$147,104$0$16,827
ROBERT LOCKWOOD
SECRETARY6.00Yes (X)Yes (X)$0$0$0
BRAD NUNEMAKER
TREASURER6.00Yes (X)Yes (X)$0$0$0
ROCCO ARIZZI
DIRECTOR2.00Yes (X)$0$0$0
COREY BRAASTAD
DIRECTOR2.00Yes (X)$0$0$0
DOUGLAS ERWIN
DIRECTOR2.00Yes (X)$0$0$0
JUSTIN KUESTER
DIRECTOR2.00Yes (X)$0$0$0
MELISSA MILINOVICH
DIRECTOR2.00Yes (X)$0$0$0
STEVE RAGLAND
DIRECTOR2.00Yes (X)$0$0$0
ADI RAPPOPORT
DIRECTOR2.00Yes (X)$0$0$0
BARB TRAINOR
DIRECTOR2.00Yes (X)$0$0$0
GREG ZERZAN
DIRECTOR2.00Yes (X)$0$0$0
ANNIE KENNEDY
DIRECTOR2.00Yes (X)$0$0$0
SPENCER PERLMAN
DIRECTOR2.00Yes (X)$0$0$0
JOHN PORTER
DIRECTOR2.00Yes (X)$0$0$0
JILL JARECKI
RESEARCH DIRECTOR50.00$137,056$0$3,733Yes (X)
SUSAN KOVACH
FINANCE & ADMINISTRATION DIRECTOR60.00$130,000$0$3,733Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$414,160TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$24,293TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K3IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (2 entries)

Address Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCdServicesServicesDescCompensationCompensationAmt
MCDERMOTT WILL & EMERY LLP
272 MIDDLEFIED ROAD SUITE 100MENLO PARTCA94025LEGAL SERVCIES$131,507
DRINKER BIDDLE & REATH LLP
1500 K STREET NWWASHINGTONDC20005LEGAL AND LOBBYING SERVICES$131,355
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K2CntrctRcvdGreaterThan100KCnt
Fundraising$4,702,320FundraisingAmt
All Other Contributions$447,002AllOtherContributionsAmt
Noncash Contributions$326,317NoncashContributionsAmt
Total Contributions$5,149,322TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescANNUAL CONFERENCEDesc
Business900099BusinessCd
Total Revenue Column$815,371TotalRevenueColumnAmt
Related Or Exempt Func Income$815,371RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$815,371TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$19,250TotalRevenueColumnAmt
Exclusion$19,250ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$344,844SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$370,131SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$25,287SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$25,287TotalRevenueColumnAmt
Exclusion-$25,287ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$521,892FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$4,702,320ContriRptFundraisingEventAmt
Fundraising Direct Expenses$374,279FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$147,613TotalRevenueColumnAmt
Exclusion$147,613ExclusionAmt
FieldValueIRS element (for citing)
Gross Sales Of Inventory$23,592GrossSalesOfInventoryAmt
Cost Of Goods Sold$20,075CostOfGoodsSoldAmt

Net Income Or Loss NetIncomeOrLossGrp

FieldValueIRS element (for citing)
Total Revenue Column$3,517TotalRevenueColumnAmt
Related Or Exempt Func Income$3,517RelatedOrExemptFuncIncomeAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$6,109,786TotalRevenueColumnAmt
Related Or Exempt Func Income$818,888RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$141,576ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$1,219,840TotalAmt
Program Services$1,219,840ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$193,907TotalAmt
Program Services$133,796ProgramServicesAmt
Management And General$32,964ManagementAndGeneralAmt
Fundraising$27,147FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$1,344,482TotalAmt
Program Services$896,441ProgramServicesAmt
Management And General$78,687ManagementAndGeneralAmt
Fundraising$369,354FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$86,300TotalAmt
Program Services$55,808ProgramServicesAmt
Management And General$2,901ManagementAndGeneralAmt
Fundraising$27,591FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$122,858TotalAmt
Program Services$81,954ProgramServicesAmt
Management And General$9,761ManagementAndGeneralAmt
Fundraising$31,143FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$138,408TotalAmt
Program Services$138,408ProgramServicesAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$39,974TotalAmt
Management And General$39,974ManagementAndGeneralAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$128,038TotalAmt
Program Services$88,349ProgramServicesAmt
Management And General$8,873ManagementAndGeneralAmt
Fundraising$30,816FundraisingAmt

Fees For Services Prof Fundraising FeesForServicesProfFundraising

FieldValueIRS element (for citing)
Total$24,159TotalAmt
Fundraising$24,159FundraisingAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$5,608TotalAmt
Management And General$5,608ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$79,806TotalAmt
Program Services$78,373ProgramServicesAmt
Management And General$218ManagementAndGeneralAmt
Fundraising$1,215FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$79,531TotalAmt
Program Services$53,743ProgramServicesAmt
Management And General$6,358ManagementAndGeneralAmt
Fundraising$19,430FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$240,689TotalAmt
Program Services$193,154ProgramServicesAmt
Management And General$11,085ManagementAndGeneralAmt
Fundraising$36,450FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$126,195TotalAmt
Program Services$94,599ProgramServicesAmt
Management And General$6,310ManagementAndGeneralAmt
Fundraising$25,286FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$88,442TotalAmt
Program Services$58,964ProgramServicesAmt
Management And General$6,523ManagementAndGeneralAmt
Fundraising$22,955FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$366,374TotalAmt
Program Services$269,357ProgramServicesAmt
Management And General$47,871ManagementAndGeneralAmt
Fundraising$49,146FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$537,887TotalAmt
Program Services$533,403ProgramServicesAmt
Management And General$164ManagementAndGeneralAmt
Fundraising$4,320FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$102,305TotalAmt
Program Services$88,105ProgramServicesAmt
Management And General$2,840ManagementAndGeneralAmt
Fundraising$11,360FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$15,931TotalAmt
Program Services$12,457ProgramServicesAmt
Management And General$1,240ManagementAndGeneralAmt
Fundraising$2,234FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
FUNDRAISING EVENTS$733,933$534,782$12,788$186,363
BANK CHARGES$77,629$31,207$3,949$42,473
MISCELLANEOUS$58,251$27,640$5,084$25,527
PATIENT SERVICES$43,613$42,883$18$712

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$13,384TotalAmt
Program Services$13,384ProgramServicesAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$5,867,544TotalAmt
Program Services$4,646,647ProgramServicesAmt
Management And General$283,216ManagementAndGeneralAmt
Fundraising$937,681FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,775,752BOYAmt
EOY$1,961,915EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$1,031,833BOYAmt
EOY$696,160EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$128,835BOYAmt
EOY$76,550EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$36,432BOYAmt
EOY$89,780EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$14,691BOYAmt
EOY$16,413EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$707,792LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$492,162LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$261,268BOYAmt
EOY$215,630EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
EOY$854,008EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
BOY$547BOYAmt
EOY$547EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$5,797BOYAmt
EOY$5,797EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$3,255,155BOYAmt
EOY$3,916,800EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$490,193BOYAmt
EOY$622,416EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$703,749BOYAmt
EOY$978,750EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,193,942BOYAmt
EOY$1,601,166EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,034,679BOYAmt
EOY$1,186,315EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$315,616BOYAmt
EOY$305,881EOYAmt

Permanently Rstr Net Assets PermanentlyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$710,918BOYAmt
EOY$823,438EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$2,061,213BOYAmt
EOY$2,315,634EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$3,255,155BOYAmt
EOY$3,916,800EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$242,242ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$12,179NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Info In Schedule O Part XIIYes (X)InfoInScheduleOPartXIIInd
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$4,241,909CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$4,596,877CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,639,671CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,716,073CurrentTaxYearMinus1YearAmt
Current Tax Year$5,374,986CurrentTaxYearAmt
Total$23,569,516TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$4,241,909CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$4,596,877CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,639,671CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,716,073CurrentTaxYearMinus1YearAmt
Current Tax Year$5,374,986CurrentTaxYearAmt
Total$23,569,516TotalAmt
FieldValueIRS element (for citing)
Public Support Total170$23,569,516PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$2,193CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,391CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$3,330CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$21,373CurrentTaxYearMinus1YearAmt
Current Tax Year$19,250CurrentTaxYearAmt
Total$48,537TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$362,448CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$589,565CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$556,430CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$605,696CurrentTaxYearMinus1YearAmt
Current Tax Year$1,111,599CurrentTaxYearAmt
Total$3,225,738TotalAmt
FieldValueIRS element (for citing)
Total Support$26,843,791TotalSupportAmt
Gross Receipts Rltd Activities$1,456,700GrossReceiptsRltdActivitiesAmt
Public Support CY1700.87800PublicSupportCY170Pct
Public Support PY1700.87680PublicSupportPY170Pct
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

FieldValueIRS element (for citing)
Volunteers0VolunteersInd
Paid Staff Or Management0PaidStaffOrManagementInd
Media Advertisements0MediaAdvertisementsInd
Mailings Members0MailingsMembersInd
Publications Or Broadcast0PublicationsOrBroadcastInd
Grants Other Organizations0GrantsOtherOrganizationsInd
Direct Contact Legislators0DirectContactLegislatorsInd
Rallies Demonstrations0RalliesDemonstrationsInd
Other ActivitiesYes (1)OtherActivitiesInd
Other Activities$128,038OtherActivitiesAmt
Total Lobbying Expenditures$128,038TotalLobbyingExpendituresAmt
Not Described Section501c30NotDescribedSection501c3Ind

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART II-B, LINE 1:FormAndLineReferenceDesc
ExplanationTHE ORGANIZATION PAID DRINKER BIDDLE & REATH. LLP, A LAW FIRM PROVIDING PROFESSIONAL LOBBYING SERVICES, FEES TO LOBBY FOR LEGISLATION THAT WOULD BENEFIT THE ORGANIZATION'S MISSION AND TO KEEP THE ORGANIZATION'S MANAGEMENT INFORMED ABOUT LEGISLATION THAT MAY AFFECT THE ORGANIZATION'S MISSION.ExplanationTxt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$741,466BeginningYearBalanceAmt
Contributions$112,008ContributionsAmt
Investment Earnings Or Losses$534InvestmentEarningsOrLossesAmt
End Year Balance$854,008EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$620,515BeginningYearBalanceAmt
Contributions$109,608ContributionsAmt
Investment Earnings Or Losses$11,343InvestmentEarningsOrLossesAmt
End Year Balance$741,466EndYearBalanceAmt

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$436,946BeginningYearBalanceAmt
Contributions$181,698ContributionsAmt
Investment Earnings Or Losses$1,871InvestmentEarningsOrLossesAmt
End Year Balance$620,515EndYearBalanceAmt

CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$220,438BeginningYearBalanceAmt
Contributions$214,976ContributionsAmt
Investment Earnings Or Losses$1,532InvestmentEarningsOrLossesAmt
End Year Balance$436,946EndYearBalanceAmt

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

FieldValueIRS element (for citing)
Contributions$220,438ContributionsAmt
End Year Balance$220,438EndYearBalanceAmt
FieldValueIRS element (for citing)
Endowments Held Unrelated Org0EndowmentsHeldUnrelatedOrgInd
Endowments Held Related Org0EndowmentsHeldRelatedOrgInd

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$707,792OtherCostOrOtherBasisAmt
Depreciation$492,162DepreciationAmt
Book Value$215,630BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$215,630TotalBookValueLandBuildingsAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$6,530,711TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$12,179NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$20,000DonatedServicesAndUseFcltsAmt
Other Revenue$394,354OtherRevenueAmt
Revenue Not Reported$426,533RevenueNotReportedAmt
Revenue Subtotal$6,104,178RevenueSubtotalAmt
Investment Expenses Not Incld$5,608InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$5,608RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$6,109,786TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$6,276,290TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$20,000DonatedServicesUseFcltsAmt
Other Expenses Included$394,354OtherExpensesIncludedAmt
Expenses Not Reported$414,354ExpensesNotReportedAmt
Expenses Subtotal$5,861,936ExpensesSubtotalAmt
Investment Expenses Not Incld2$5,608InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$5,608ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$5,867,544TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (3 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART X, LINE 2:THE ORGANIZATION ASSESSES ITS TAX POSITION IN ACCORDANCE WITH "ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES" AS PRESCRIBED BY THE ACCOUNTING STANDARDS CODIFICATION, WHICH PROVIDES GUIDANCE FOR FINANCIAL STATEMENT RECOGNITION AND MEASUREMENT OF UNCERTAIN TAX POSITIONS TAKEN OR EXPECTED TO BE TAKEN IN A TAX RETURN FOR OPEN TAX YEARS (GENERALLY A PERIOD OF THREE YEARS FROM THE LATER OF EACH RETURN'S DUE DATE OR THE DATE FILED) THAT REMAIN SUBJECT TO EXAMINATION BY THE ORGANIZATION'S MAJOR TAX JURISDICTIONS. THE ORGANIZATION BELIEVES THAT IT DOES NOT HAVE ANY SIGNIFICANT UNCERTAIN TAX POSITIONS REQUIRING RECOGNITION OR MEASUREMENT.
PART XI, LINE 2D - OTHER ADJUSTMENTS:SPECIAL EVENT EXPENSE REPORTED ON PAGE 9, LINE 8B 374,279. COST OF SALES REPORTED ON PAGE 9, LINE 10B 20,075.
PART XII, LINE 2D - OTHER ADJUSTMENTS:SPECIAL EVENT EXPENSES REPORTED ON PAGE 9, LINE 8A 374,279. COST OF SALES REPORTED ON PAGE 9, LINE 10B 20,075.

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records Maintained0GrantRecordsMaintainedInd
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continutation Total Office0ContinutationTotalOfficeCnt
Continutation Total Employee0ContinutationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$0SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$0TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp

FieldValueIRS element (for citing)
RegionEUROPE (INCLUDING ICELAND & GREENLAND)RegionTxt
Purpose Of GrantMEDICAL RESEARCHPurposeOfGrantTxt
Cash Grant$90,000CashGrantAmt
Manner Of Cash DisbursementWIRE TRANSFERMannerOfCashDisbursementTxt
FieldValueIRS element (for citing)
Total501c3 Org1Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt
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 ReferenceSCHEDULE F, PART II, SUPPLEMENTAL INFORMATIONFormAndLineReferenceDesc
ExplanationA GRANT WAS MADE TO A FOREIGN UNIVERSITY. THE UNVIERSITY IS WELL KNOWN FOR ITS SCIENTIFIC RESEARCH.ExplanationTxt

Schedule G IRS990ScheduleG

FieldValueIRS element (for citing)
In Person SolicitationsYes (X)InPersonSolicitationsInd
Special Fundraising EventsYes (X)SpecialFundraisingEventsInd
Agrmt Prof Fundraising ActyYes (1)AgrmtProfFundraisingActyInd

Fundraiser Activity Info FundraiserActivityInfoGrp (2 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdActivityActivityTxtFundraiser Control Of FundsFundraiserControlOfFundsIndGross ReceiptsGrossReceiptsAmtRetained By ContractorRetainedByContractorAmtNet To OrganizationNetToOrganizationAmt
EPIPHANY PRODUCTIONS INC
104 HUME AVEALEXANDRIAVA22301SPECIAL EVENTS ASSISTANCE0$236,025$21,659$214,366
EPIPHANY PRODUCTIONS INC
104 HUME AVEALEXANDRIAVA22301FUND RAISING CONSULTATIONS0$0$2,500$0
FieldValueIRS element (for citing)
Total Gross Receipts$236,025TotalGrossReceiptsAmt
Total Retained By Contractors$24,159TotalRetainedByContractorsAmt
Total Net To Organization$214,366TotalNetToOrganizationAmt
Licensed StatesALLicensedStatesCd
Licensed StatesAKLicensedStatesCd
Licensed StatesAZLicensedStatesCd
Licensed StatesARLicensedStatesCd
Licensed StatesCALicensedStatesCd
Licensed StatesCOLicensedStatesCd
Licensed StatesCTLicensedStatesCd
Licensed StatesDELicensedStatesCd
Licensed StatesFLLicensedStatesCd
Licensed StatesGALicensedStatesCd
Licensed StatesHILicensedStatesCd
Licensed StatesIDLicensedStatesCd
Licensed StatesILLicensedStatesCd
Licensed StatesINLicensedStatesCd
Licensed StatesIALicensedStatesCd
Licensed StatesKSLicensedStatesCd
Licensed StatesKYLicensedStatesCd
Licensed StatesLALicensedStatesCd
Licensed StatesMELicensedStatesCd
Licensed StatesMDLicensedStatesCd
Licensed StatesMALicensedStatesCd
Licensed StatesMILicensedStatesCd
Licensed StatesMNLicensedStatesCd
Licensed StatesMSLicensedStatesCd
Licensed StatesMOLicensedStatesCd
Licensed StatesMTLicensedStatesCd
Licensed StatesNELicensedStatesCd
Licensed StatesNVLicensedStatesCd
Licensed StatesNHLicensedStatesCd
Licensed StatesNJLicensedStatesCd
Licensed StatesNMLicensedStatesCd
Licensed StatesNYLicensedStatesCd
Licensed StatesNCLicensedStatesCd
Licensed StatesNDLicensedStatesCd
Licensed StatesOHLicensedStatesCd
Licensed StatesOKLicensedStatesCd
Licensed StatesORLicensedStatesCd
Licensed StatesPALicensedStatesCd
Licensed StatesRILicensedStatesCd
Licensed StatesSCLicensedStatesCd
Licensed StatesSDLicensedStatesCd
Licensed StatesTNLicensedStatesCd
Licensed StatesTXLicensedStatesCd
Licensed StatesUTLicensedStatesCd
Licensed StatesVTLicensedStatesCd
Licensed StatesVALicensedStatesCd
Licensed StatesWALicensedStatesCd
Licensed StatesWVLicensedStatesCd
Licensed StatesWILicensedStatesCd
Licensed StatesWYLicensedStatesCd
Licensed StatesDCLicensedStatesCd

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1CONGRESSIONAL DINNEREvent1Nm
Gross Receipts Event1$236,025GrossReceiptsEvent1Amt
Charitable Contri Event1$100,200CharitableContriEvent1Amt
Gross Revenue Event1$135,825GrossRevenueEvent1Amt
Food And Beverage Event1$26,074FoodAndBeverageEvent1Amt
Other Direct Expenses Event1$25,544OtherDirectExpensesEvent1Amt
Event2GALA OF HOPEEvent2Nm
Gross Receipts Event2$225,403GrossReceiptsEvent2Amt
Charitable Contri Event2$65,000CharitableContriEvent2Amt
Gross Revenue Event2$160,403GrossRevenueEvent2Amt
Food And Beverage Event2$9,236FoodAndBeverageEvent2Amt
Entertainment Event2$40,279EntertainmentEvent2Amt
Other Direct Expenses Event2$8,610OtherDirectExpensesEvent2Amt
Other Events Total120OtherEventsTotalCnt
Gross Receipts Other Events$4,762,784GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$4,537,120CharitableContriOtherEventsAmt
Gross Revenue Other Events$225,664GrossRevenueOtherEventsAmt
Oth Direct Expnss Other Events$264,536OthDirectExpnssOtherEventsAmt
Gross Receipts Total$5,224,212GrossReceiptsTotalAmt
Charitable Contributions Tot$4,702,320CharitableContributionsTotAmt
Gross Revenue Total Events$521,892GrossRevenueTotalEventsAmt
Food And Beverage Total Events$35,310FoodAndBeverageTotalEventsAmt
Entertainment Total Events$40,279EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$298,690OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$374,279DirectExpenseSummaryEventsAmt
Net Income Summary$147,613NetIncomeSummaryAmt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceSCHEDULE G, PART I, LINE 2B, COLUMN (V)FormAndLineReferenceDesc
ExplanationEPIPHANY PRODUCTIONS, INC WAS PAID TO PROVIDE FUND RAISING AND CONSULTING SERVICES AND ADVICE AND TO ASSIST WITH THE PLANNING AND CONDUCTING OF THE CONGRESSIONAL DINNER. THE FUNDRAISER DOES NOT TAKE POSSESSION OF ANY FUNDS BUT INVOICES THE ORGANIZATION FOR THE EXPENSES. THE FINANCIAL AGREEMENT INCLUDES 10% OF GROSS RECEIPTS FOR THE ASSISTANCE OF THE SPECIFIC SPECIAL EVENT. THESE AMOUNTS ARE INCLUDED ON PART 1 LINE 2B (1). THE FUNDRASIER ALSO PROVIDES GENERAL ADVICE ON FUNDRASING ISSUES. EXPENSES FOR THESE SERVICES ARE INCLUDED ON PART 1, LINE 2B (2).ExplanationTxt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (9 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxtAddress Line2USAddress/AddressLine2Txt
BRIGHAM & WOMEN'S HOSPITAL
75 FRANCIS STREETBOSTONMA02115042312909501(C)(3)$50,000RESEARCH GRANT - DRUG DISCOVERY
TRUSTEES OF COLUMBIA UNIVERSITY IN NY
615 WEST 131ST STREET MAIL CODENEW YORKNY10027135598093501(C)(3)$304,000RESEARCH GRANT - PATIENT CARE8749
UNIVERSITY OF ROCHESTER
518 HYLAN BUILDINGROCHESTERNY14627160743209501(C)(3)$40,000RESEARCH GRANT - PATIENT CARE
JOHNS HOPKINS UNIVERSITY
1101 E 33RD STREET STE C020BALTIMOREMD21218521317896501(C)(3)$440,000RESEARCH GRANT - DRUG DISCOVERY
OHIO STATE UNIVERSITY
901 WOODY HAYES DRIVE 2050COLUMBUSOH43210316025986501(C)(3)$280,000RESEARCH - BASIC
HENRY JACKSON FOUNDATION
6720A ROCKLEDGE DRIVE STE 100BETHESDAMD20817521317896501(C)(3)$50,000RESEARCH GRANT - DRUG DISCOVERY
LURIE CHILDREN'S HOSPITAL
PO BOX 269CHICAGOIL60690362170833501(C)(3)$70,000RESEARCH - BASIC
RUTGERS THE STATE UNIVERSITY
65 DAVIDSON RD ROOM 317PISCATAWAYNJ08854226001086501(C)(3)$140,000RESEARCH - BASIC
THE NEMOURS FOUNDATION
10140 CENTURION PKWY NJACKSONVILLEFL33256590634433501(C)(3)$100,000RESEARCH GRANT - PATIENT CARE

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART I, LINE 2:DETAILED REQUIREMENTS MADE OF RECIPIENTS IN GRANT CONTRACTS: RECIPIENTS SHALL PROVIDE THE ORGANIZATION WITH REPORTS OF THE WORK PERFORMED UNDER THIS AGREEMENT IN ACCORDANCE WITH THE FOLLOWING SCHEDULE: QUARTERLY WRITTEN PROGRESS REPORTS DUE WITHIN THIRTY (30) DAYS AFTER THE END OF THE QUARTER. RECIPIENTS SHALL ALSO SUBMIT TO THE ORGANIZATION A COMPREHENSIVE FINAL REPORT WITHIN NINETY (90) DAYS OF TERMINATION OF THE RESEARCH PROJECT. FOR THE PURPOSE OF IDENTIFYING PATENTABLE INVENTIONS NOT COVERED BY PRE EXISTING PATENTS, RECIPIENTS SHALL SUBMIT A COPY OF ALL PROPOSED PUBLICATIONS, PAPERS, AND ANY OTHER WRITTEN DISCLOSURE OF SUCH DATA OR INFORMATION TO THE ORGANIZATION AT LEAST THIRTY (30) DAYS PRIOR TO SUBMISSION FOR PUBLICATION OR DISCLOSURE TO A THIRD PARTY.
SCHEDULE I, PART IICERTAIN GRANT PAYMENTS ARE MADE TO GRANTEES BASED ON RESEARCH MILESTONES BEING MET. THESE AMOUNTS ARE NOT INCLUDED IN THE GRANTS PAYABLE. AS OF THE END OF THE CURRENT YEAR, FUTURE AMOUNTS OF THESE PAYMENTS ARE ESTIMATED TO BE $774,000.

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
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)
PersonKENNETH HOBBYPersonNm
TitlePRESIDENTTitleTxt
Base Compensation Filing Org$147,104BaseCompensationFilingOrgAmt
Compensation Based On Rltd Orgs$0CompensationBasedOnRltdOrgsAmt
Bonus Filing Organization$0BonusFilingOrganizationAmount
Bonus Related Organizations$0BonusRelatedOrganizationsAmt
Other Compensation Filing Org$0OtherCompensationFilingOrgAmt
Other Compensation Rltd Orgs$0OtherCompensationRltdOrgsAmt
Deferred Compensation Flng Org$0DeferredCompensationFlngOrgAmt
Deferred Comp Rltd Orgs$0DeferredCompRltdOrgsAmt
Nontaxable Benefits Filing Org$16,827NontaxableBenefitsFilingOrgAmt
Nontaxable Benefits Rltd Orgs$0NontaxableBenefitsRltdOrgsAmt
Total Compensation Filing Org$163,931TotalCompensationFilingOrgAmt
Total Compensation Rltd Orgs$0TotalCompensationRltdOrgsAmt
Comp Report Prior990 Filing Org$0CompReportPrior990FilingOrgAmt
Comp Report Prior990 Rltd Orgs$0CompReportPrior990RltdOrgsAmt

Schedule M IRS990ScheduleM

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution8ContributionCnt
Noncash Contributions Rpt F990$34,355NoncashContributionsRptF990Amt
Method Of Determining RevenuesMARKET VALUEMethodOfDeterminingRevenuesTxt

Other Non Cash Contri Table OtherNonCashContriTableGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
DescSEE PART IIDesc
Contribution14ContributionCnt
Noncash Contributions Rpt F990$291,962NoncashContributionsRptF990Amt
Method Of Determining RevenuesRETAIL RENTAL VALUEMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC Gifts0ReviewProcessUnusualNCGiftsInd
Third Parties Used0ThirdPartiesUsedInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 33:FormAndLineReferenceDesc
Explanation. PAGE 1, LINE 25: THE AMOUNT ON LINE 25 INCLUDES DONATED RENTAL EQUIPMENT AND FOOD FOR SPECIAL EVENTS, DONATED EQUIPTMENT, AND OTHER ITEMS.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION B, LINE 11THE FINANCE COMMITTEE OF THE BOARD AND THE PRESIDENT PERFORM AN INITIAL REVIEW OF FORM 990. AFTER ACCEPTANCE OF FORM 990 BY THE FINANCE COMMITTEE AND THE PRESIDENT, FORM 990 IS EMAILED TO THE FULL BOARD FOR REVIEW AND APPROVAL BEFORE IT IS FILED.
FORM 990, PART VI, SECTION B, LINE 12CMEMBERS OF THE BOARD OF DIRECTORS ARE REQUIRED TO SIGN AN ANNUAL STATEMENT DISCLOSING ANY POSSIBLE CONFLICTS OF INTEREST.
FORM 990, PART VI, SECTION B, LINE 15PRESIDENT'S COMPENSATION - APPROVED BY THE BOARD OF DIRECTORS. THE BOARD'S EXECUTIVE COMMITTEE CONDUCTS A MARKET SURVEY OF THE POSITION USING INDEPENDENT COMPENSATION SOURCES, AND THEN PRESENTS A RECOMMENDATION TO THE FULL BOARD FOR APPROVAL.
FORM 990, PART VI, SECTION C, LINE 19THE ORGANIZATION'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. THE REQUEST FOR DOCUMENTS CAN BE MADE IN WRITING OR BY PHONE BY CONTACTING THE NATIONAL OFFICE. WHEN A REQUEST IS MADE FOR DOCUMENTS, THE EXECUTIVE COMMITTEE OF THE BOARD OF DIRECTORS APPROVES THE RELEASE OF THE DOCUMENTS.
FORM 990, PAGE 12, PART XII, QUESTION 2C:NO CHANGES WERE MADE TO THE AUDIT OVERSIGHT PROCESS FOR THE CURRENT YEAR.