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FAMILIES OF SMA: Form 990, tax year 2016

View the entire original 990 at ProPublica ↗

Organization
FAMILIES OF SMA (EIN 36-3320440)
Tax period
2016-07-01 to 2017-06-30
Filed
2017-11-10
IRS object ID
201723149349301572
Schema version
2016v3.0
Source
Download XML · Original 990 at ProPublica

Every field in the e-filed return. Faint text is the IRS element name, for citing.

Return header ReturnHeader

FieldValueIRS element (for citing)
Return2017-11-10T10:12:42-06:00ReturnTs
Tax Period End2017-06-30TaxPeriodEndDt

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 Begin2016-07-01TaxPeriodBeginDt

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
Signature2017-11-08SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJANET FIFERPreparerPersonNm
PTINP01225772PTIN
Phone3058585600PhoneNum
Preparation2017-11-02PreparationDt

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address209.236.133.1IPv4AddressTxt
FieldValueIRS element (for citing)
IP2017-11-08IPDt
IP Tm13:52:23IPTm
IP TimezoneESIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id552FB97274B2FEEA529BCF51084921CBA533AA45AtSubmissionCreationDeviceId
At Submission Filing Device IdAA0D55171D42E1B9F96B6D0271635E1546BC93BAAtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2016TaxYr
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$8,630,278GrossReceiptsAmt
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 Body14VotingMembersGoverningBodyCnt
Voting Members Independent14VotingMembersIndependentCnt
Total Employee32TotalEmployeeCnt
Total Volunteers6600TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$5,149,322PYContributionsGrantsAmt
CY Contributions Grants$5,818,435CYContributionsGrantsAmt
PY Program Service Revenue$815,371PYProgramServiceRevenueAmt
CY Program Service Revenue$1,381,841CYProgramServiceRevenueAmt
PY Investment Income-$6,037PYInvestmentIncomeAmt
CY Investment Income$23,825CYInvestmentIncomeAmt
PY Other Revenue$151,130PYOtherRevenueAmt
CY Other Revenue$649,175CYOtherRevenueAmt
PY Total Revenue$6,109,786PYTotalRevenueAmt
CY Total Revenue$7,873,276CYTotalRevenueAmt
PY Grants And Similar Paid$1,219,840PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$977,500CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$1,747,547PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$2,465,061CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$24,159PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$2,500CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$1,009,256CYTotalFundraisingExpenseAmt
PY Other Expenses$2,875,998PYOtherExpensesAmt
CY Other Expenses$4,120,956CYOtherExpensesAmt
PY Total Expenses$5,867,544PYTotalExpensesAmt
CY Total Expenses$7,566,017CYTotalExpensesAmt
PY Revenues Less Expenses$242,242PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$307,259CYRevenuesLessExpensesAmt
Total Assets BOY$3,916,800TotalAssetsBOYAmt
Total Assets EOY$4,984,542TotalAssetsEOYAmt
Total Liabilities BOY$1,601,166TotalLiabilitiesBOYAmt
Total Liabilities EOY$2,289,429TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$2,315,634NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$2,695,113NetAssetsOrFundBalancesEOYAmt
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$949,094ExpenseAmt
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 EDUCATE 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$3,099,625ExpenseAmt
Grant$977,500GrantAmt
Revenue$320,298RevenueAmt
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 & REGULATORY RESEARCH, TO PROVIDE THE INFRASTRUCTURE TO TEST THE DRUG CANDIDATES. DURING THIS PERIOD CURE SMA FUNDED 15 NEW AND ONGOING BASIC RESEARCH GRANTS, AS WELL AS 4 ONGOING DRUG DISCOVERY PROJECTS. WE ALSO FUNDED AND EXECUTED MULTIPLE CLINICAL AND REGULATORY FOCUSED PROJECTS, INCLUDING NOMINATING SMA FOR INCLUSION ON THE FEDERAL UNIFORM RECOMMENDED SCREENING PANEL AND HOLDING A EXTERNALLY-LED PATIENT FOCUSED DRUG DEVELOPMENT MEETING WITH THE FDA. CURE SMA ALSO PROVIDES PATIENT AND CLINICAL CARE EDUCATION, WITH EXPERTISE FROM ITS MEDICAL ADVISORY COUNCIL. IT ALSO IS IN THE BEGINNING STAGES OF LAUNCHING A MULTI-CENTER CLINICAL DATA REGISTRY WITHIN AN ACCREDITED CARE CENTER NETWORK. WITH THE FIRST FDA-APPROVED THERAPY COMING IN DECEMBER 2016, THE TEAM DEVOTED RESOURCES TO COMPILING A LIST OF ACCESS CENTERS FOR PATIENTS.CURRENTLY, THERE IS ONE APPROVED DRUG FOR SMA, WITH ANOTHER 19 DRUG PROGRAMS IN DEVELOPMENT, INCLUDING FIVE IN CLINICAL TRIALS. CURE SMA HAS FUNDED HALF OF ALL THE ONGOING DRUG PROGRAMS IN SMA, INCLUDING FUNDING SIX DRUG PROGRAMS THIS YEAR.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$2,171,808ExpenseAmt
Revenue$1,061,543RevenueAmt
DescWE HOSTED OUR 28TH ANNUAL SMA CONFERENCE IN ORLANDO, FL, WITH OVER 2,073 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$6,220,527TotalProgramServiceExpensesAmt
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
Employee32EmployeeCnt
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 Members14GoverningBodyVotingMembersCnt
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
KELLY COLE
SECRETARY6.00Yes (X)Yes (X)$0$0$0
BRAD NUNEMAKER
TREASURER6.00Yes (X)Yes (X)$0$0$0
DOUGLAS KERR
DIRECTOR2.00Yes (X)$0$0$0
COREY BRAASTAD
DIRECTOR2.00Yes (X)$0$0$0
DOUGLAS ERWIN
DIRECTOR2.00Yes (X)$0$0$0
THOMAS MURRAY
DIRECTOR2.00Yes (X)$0$0$0
MELISSA MILINOVICH
DIRECTOR2.00Yes (X)$0$0$0
STEVE RAGLAND
DIRECTOR2.00Yes (X)$0$0$0
SHANNON SHRYNE
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
ROBERT LOCKWOOD
DIRECTOR2.00Yes (X)$0$0$0
KENNETH HOBBY
PRESIDENT70.00Yes (X)$182,099$0$14,664
JILL JARECKI
RESEARCH DIRECTOR50.00$171,689$0$628Yes (X)
SUSAN KOVACH
FINANCE & ADMIN. DIRECTOR60.00$114,996$0$628Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$468,784TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$15,920TotalOtherCompensationAmt
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$257,062
DRINKER BIDDLE & REATH LLP
1500 K STREET NWWASHINGTONDC20005LEGAL AND LOBBYING SERVICES$131,881
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K2CntrctRcvdGreaterThan100KCnt
Info In Schedule O Part VIIIYes (X)InfoInScheduleOPartVIIIInd
Fundraising$3,134,377FundraisingAmt
All Other Contributions$2,684,058AllOtherContributionsAmt
Noncash Contributions$371,235NoncashContributionsAmt
Total Contributions$5,818,435TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
ANNUAL CONFERENCE900099$1,061,543$1,061,543
INDUSTRY COLLABORATION900099$320,298$320,298
FieldValueIRS element (for citing)
Total Program Service Revenue$1,381,841TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$20,834TotalRevenueColumnAmt
Exclusion$20,834ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$240,055SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$237,064SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$2,991SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,991TotalRevenueColumnAmt
Exclusion$2,991ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$502,807FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$3,134,377ContriRptFundraisingEventAmt
Fundraising Direct Expenses$496,065FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$6,742TotalRevenueColumnAmt
Exclusion$6,742ExclusionAmt
FieldValueIRS element (for citing)
Gross Sales Of Inventory$15,773GrossSalesOfInventoryAmt
Cost Of Goods Sold$23,873CostOfGoodsSoldAmt

Net Income Or Loss NetIncomeOrLossGrp

FieldValueIRS element (for citing)
Total Revenue Column-$8,100TotalRevenueColumnAmt
Related Or Exempt Func Income-$8,100RelatedOrExemptFuncIncomeAmt

Other Revenue Misc OtherRevenueMiscGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
SEE SCHEDULE O900099$585,000$585,000
OUTLICENSING900099$65,533$65,533
FieldValueIRS element (for citing)
Other Revenue Total$650,533OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$7,873,276TotalRevenueColumnAmt
Related Or Exempt Func Income$2,024,274RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$30,567ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$592,500TotalAmt
Program Services$592,500ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$385,000TotalAmt
Program Services$385,000ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$218,855TotalAmt
Program Services$151,010ProgramServicesAmt
Management And General$37,205ManagementAndGeneralAmt
Fundraising$30,640FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$1,917,325TotalAmt
Program Services$1,364,890ProgramServicesAmt
Management And General$104,497ManagementAndGeneralAmt
Fundraising$447,938FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$28,129TotalAmt
Program Services$21,192ProgramServicesAmt
Management And General$1,325ManagementAndGeneralAmt
Fundraising$5,612FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$129,286TotalAmt
Program Services$91,064ProgramServicesAmt
Management And General$6,468ManagementAndGeneralAmt
Fundraising$31,754FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$171,466TotalAmt
Program Services$120,036ProgramServicesAmt
Management And General$12,459ManagementAndGeneralAmt
Fundraising$38,971FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$101,399TotalAmt
Program Services$80,751ProgramServicesAmt
Fundraising$20,648FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$38,588TotalAmt
Management And General$38,588ManagementAndGeneralAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$123,086TotalAmt
Program Services$123,086ProgramServicesAmt

Fees For Services Prof Fundraising FeesForServicesProfFundraising

FieldValueIRS element (for citing)
Total$2,500TotalAmt
Fundraising$2,500FundraisingAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$6,701TotalAmt
Management And General$6,701ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$18,209TotalAmt
Program Services$2,625ProgramServicesAmt
Management And General$8,573ManagementAndGeneralAmt
Fundraising$7,011FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$136,227TotalAmt
Program Services$95,919ProgramServicesAmt
Management And General$9,414ManagementAndGeneralAmt
Fundraising$30,894FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$431,754TotalAmt
Program Services$328,586ProgramServicesAmt
Management And General$18,977ManagementAndGeneralAmt
Fundraising$84,191FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$114,713TotalAmt
Program Services$86,035ProgramServicesAmt
Management And General$5,736ManagementAndGeneralAmt
Fundraising$22,942FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$149,047TotalAmt
Program Services$104,482ProgramServicesAmt
Management And General$10,377ManagementAndGeneralAmt
Fundraising$34,188FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$1,377,797TotalAmt
Program Services$1,221,871ProgramServicesAmt
Management And General$70,009ManagementAndGeneralAmt
Fundraising$85,917FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$148,136TotalAmt
Program Services$131,097ProgramServicesAmt
Management And General$3,408ManagementAndGeneralAmt
Fundraising$13,631FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$17,982TotalAmt
Program Services$12,587ProgramServicesAmt
Management And General$1,259ManagementAndGeneralAmt
Fundraising$4,136FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
FUNDRAISING EVENTS$737,310$605,880$46$131,384
SMA RESEARCH EXPENSES$570,709$570,709
PATIENT SERVICES$120,000$120,000
MISCELLANEOUS$29,298$11,207$1,192$16,899

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$7,566,017TotalAmt
Program Services$6,220,527ProgramServicesAmt
Management And General$336,234ManagementAndGeneralAmt
Fundraising$1,009,256FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,961,915BOYAmt
EOY$2,251,340EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$696,160BOYAmt
EOY$875,061EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$76,550BOYAmt
EOY$209,652EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$89,780BOYAmt
EOY$327,032EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$16,413BOYAmt
EOY$49,845EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$381,064LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$165,107LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$215,630BOYAmt
EOY$215,957EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$854,008BOYAmt
EOY$1,032,313EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

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

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$5,797BOYAmt
EOY$22,795EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$3,916,800BOYAmt
EOY$4,984,542EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$622,416BOYAmt
EOY$1,299,429EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$978,750BOYAmt
EOY$990,000EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,601,166BOYAmt
EOY$2,289,429EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,186,315BOYAmt
EOY$1,212,123EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$305,881BOYAmt
EOY$484,392EOYAmt

Permanently Rstr Net Assets PermanentlyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$823,438BOYAmt
EOY$998,598EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$2,315,634BOYAmt
EOY$2,695,113EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$3,916,800BOYAmt
EOY$4,984,542EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$307,259ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$72,220NetUnrlzdGainsLossesInvstAmt
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$4,596,877CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$4,639,671CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,716,073CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$5,374,986CurrentTaxYearMinus1YearAmt
Current Tax Year$6,321,242CurrentTaxYearAmt
Total$25,648,849TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$4,596,877CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$4,639,671CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,716,073CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$5,374,986CurrentTaxYearMinus1YearAmt
Current Tax Year$6,321,242CurrentTaxYearAmt
Total$25,648,849TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$319,381SubstantialContributorsTotAmt
Public Support Total170$25,329,468PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$2,391CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$3,330CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$21,373CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$19,250CurrentTaxYearMinus1YearAmt
Current Tax Year$20,834CurrentTaxYearAmt
Total$67,178TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$589,565CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$556,430CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$605,696CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,111,599CurrentTaxYearMinus1YearAmt
Current Tax Year$2,032,374CurrentTaxYearAmt
Total$4,895,664TotalAmt
FieldValueIRS element (for citing)
Total Support$30,611,691TotalSupportAmt
Gross Receipts Rltd Activities$1,205,020GrossReceiptsRltdActivitiesAmt
Public Support CY1700.82740PublicSupportCY170Pct
Public Support PY1700.87800PublicSupportPY170Pct
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$123,086OtherActivitiesAmt
Total Lobbying Expenditures$123,086TotalLobbyingExpendituresAmt
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. OUR TEAM WORKS WITH PUBLIC POLICY EXPERTS AND ADVOCATES IN WASHINGTON AND IN THE STATE CAPITALS TO KEEP ABREAST OF DEVELOPMENTS IMPACTING THE CURE SMA COMMUNITY.ExplanationTxt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$854,008BeginningYearBalanceAmt
Contributions$116,736ContributionsAmt
Investment Earnings Or Losses$87,854InvestmentEarningsOrLossesAmt
Other Expenditures$26,285OtherExpendituresAmt
End Year Balance$1,032,313EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

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

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

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

CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

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

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$220,438BeginningYearBalanceAmt
Contributions$214,976ContributionsAmt
Investment Earnings Or Losses$1,532InvestmentEarningsOrLossesAmt
End Year Balance$436,946EndYearBalanceAmt
FieldValueIRS element (for citing)
Endowments Held Unrelated Org0EndowmentsHeldUnrelatedOrgInd
Endowments Held Related Org0EndowmentsHeldRelatedOrgInd

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$381,064OtherCostOrOtherBasisAmt
Depreciation$165,107DepreciationAmt
Book Value$215,957BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$215,957TotalBookValueLandBuildingsAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$8,458,733TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$72,220NetUnrealizedGainsInvstAmt
Other Revenue$519,938OtherRevenueAmt
Revenue Not Reported$592,158RevenueNotReportedAmt
Revenue Subtotal$7,866,575RevenueSubtotalAmt
Investment Expenses Not Incld$6,701InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$6,701RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$7,873,276TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$8,079,254TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included$519,938OtherExpensesIncludedAmt
Expenses Not Reported$519,938ExpensesNotReportedAmt
Expenses Subtotal$7,559,316ExpensesSubtotalAmt
Investment Expenses Not Incld2$6,701InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$6,701ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$7,566,017TotalExpensesPerForm990Amt

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 496,065. COST OF SALES REPORTED ON PAGE 9, LINE 10B 23,873.
PART XII, LINE 2D - OTHER ADJUSTMENTS:SPECIAL EVENT EXPENSES REPORTED ON PAGE 9, LINE 8A 496,065. COST OF SALES REPORTED ON PAGE 9, LINE 10B 23,873.

Schedule F IRS990ScheduleF

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

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMRESEARCH$30,000WIRE TRANSFER
EUROPE (INCLUDING ICELAND & GREENLAND)RESEARCH$70,000WIRE TRANSFER
EUROPE (INCLUDING ICELAND & GREENLAND)RESEARCH$70,000WIRE TRANSFER
EAST ASIA AND THE PACIFICRESEARCH$75,000WIRE TRANSFER
SOUTH AMERICARESEARCH$140,000WIRE TRANSFER
FieldValueIRS element (for citing)
Total501c3 Org5Total501c3OrgCnt
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
ExplanationCURE SMA HAS A COMMITTEE THAT EVALUATES ALL GRANT APPLICATIONS AND SELECTS GRANT BASED UPON THE QUALIFICATION OF THE INSTITUTION, RESEARCHER, THE RESEARCH PROJECT'S AND POTENTIAL APPLICABILITY TO SMA. ONCE A GRANT HAS BEEN APPROVED, GRANTEES ARE REQUIRED TO SUBMIT PROGRESS REPORTS BEFORE ADDITIONAL FUNDING IS AUTHORIZED. EACH AWARD INCLUDES THE FOLLOWING TERMS: -INSTITUTE (GRANTEE) SHALL PROVIDE SPONSOR (CURE SMA) WITH REPORTS OF THE WORK PERFORMED UNDER THIS AGREEMENT IN ACCORDANCE WITH THE FOLLOWING SCHEDULE: 1)QUARTERLY WRITTEN PROGRESS REPORTS DUE WITHIN THIRTY (30) DAYS AFTER THE END OF EACH CALENDAR QUARTER. 2)INSTITUTE SHALL SUBMIT TO SPONSOR A COMPREHENSIVE FINAL REPORT WITHIN NINETY (90) DAYS OF TERMINATION OR EXPIRATION OF THE RESEARCH PROJECT. 3)INSTITUTE SHALL ALSO PROVIDE TO SPONSOR A SUCCINCT WRITTEN LAY REPORT OF ANY PUBLICATIONS RESULTING FROM RESEARCH PERFORMED UNDER THIS AGREEMENT CONTAINING A QUOTE FROM THE PRINCIPAL INVESTIGATOR.ExplanationTxt

Schedule G IRS990ScheduleG

FieldValueIRS element (for citing)
In Person SolicitationsYes (X)InPersonSolicitationsInd
Special Fundraising EventsYes (X)SpecialFundraisingEventsInd
Agrmt Prof Fundraising Acty0AgrmtProfFundraisingActyInd

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$279,500$24,868$254,632
EPIPHANY PRODUCTIONS INC
104 HUME AVEALEXANDRIAVA22301FUND RAISING CONSULTATIONS0$0$2,500-$2,500
FieldValueIRS element (for citing)
Total Gross Receipts$279,500TotalGrossReceiptsAmt
Total Retained By Contractors$27,368TotalRetainedByContractorsAmt
Total Net To Organization$252,132TotalNetToOrganizationAmt
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$279,500GrossReceiptsEvent1Amt
Charitable Contri Event1$148,680CharitableContriEvent1Amt
Gross Revenue Event1$130,820GrossRevenueEvent1Amt
Food And Beverage Event1$31,804FoodAndBeverageEvent1Amt
Other Direct Expenses Event1$32,140OtherDirectExpensesEvent1Amt
Event2GALA OF HOPEEvent2Nm
Gross Receipts Event2$349,078GrossReceiptsEvent2Amt
Charitable Contri Event2$57,100CharitableContriEvent2Amt
Gross Revenue Event2$291,978GrossRevenueEvent2Amt
Food And Beverage Event2$20,178FoodAndBeverageEvent2Amt
Entertainment Event2$62,270EntertainmentEvent2Amt
Other Direct Expenses Event2$17,697OtherDirectExpensesEvent2Amt
Other Events Total120OtherEventsTotalCnt
Gross Receipts Other Events$3,008,606GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$2,928,597CharitableContriOtherEventsAmt
Gross Revenue Other Events$80,009GrossRevenueOtherEventsAmt
Oth Direct Expnss Other Events$331,972OthDirectExpnssOtherEventsAmt
Gross Receipts Total$3,637,184GrossReceiptsTotalAmt
Charitable Contributions Tot$3,134,377CharitableContributionsTotAmt
Gross Revenue Total Events$502,807GrossRevenueTotalEventsAmt
Food And Beverage Total Events$51,982FoodAndBeverageTotalEventsAmt
Entertainment Total Events$62,270EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$381,809OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$496,061DirectExpenseSummaryEventsAmt
Net Income Summary$6,746NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (5 entries)

Address Line1USAddress/AddressLine1TxtAddress Line2USAddress/AddressLine2TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
TRUSTEES OF COLUMBIA UNIVERSITY IN NY
615 WEST 131ST STREET MAIL CODE8749NEW YORKNY10027135598093501(C)(3)$50,000RESEARCH GRANT - PATIENT CARE
JOHNS HOPKINS UNIVERSITY
1101 E 33RD STREET STE C020BALTIMOREMD21218521317896501(C)(3)$37,500RESEARCH GRANT - DRUG DISCOVERY
OHIO STATE UNIVERSITY
901 WOODY HAYES DRIVE 2050COLUMBUSOH43210316025986501(C)(3)$215,000RESEARCH - BASIC
LURIE CHILDREN'S HOSPITAL
PO BOX 269CHICAGOIL60690362170833501(C)(3)$215,000RESEARCH - BASIC
CURATORS OF THE UNIVERISTY OF MISSOURI
118 UNIVERSITY HALLCOLUMBIAMO652113020266440629501(C)(3)$75,000RESEARCH - BASIC
FieldValueIRS element (for citing)
Total501c3 Org5Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt

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 $341,500.

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 (2 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
KENNETH HOBBY
PRESIDENT$182,099$0$0$0$0$0$0$0$14,664$0$196,763$0$0$0
JILL JARECKI
RESEARCH DIRECTOR$171,689$0$0$0$0$0$0$0$628$0$172,317$0$0$0

Schedule M IRS990ScheduleM

Other Non Cash Contri Table OtherNonCashContriTableGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
DescSEE PART IIDesc
Contribution90ContributionCnt
Noncash Contributions Rpt F990$371,235NoncashContributionsRptF990Amt
Method Of Determining RevenuesRETAIL 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 (6 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION B, LINE 11BTHE 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 9, PART VIII, LINE 11AINCOME FROM NON-RECURRING LICENSING AGGREMENT
FORM 990, PAGE 12, PART XII, QUESTION 2C:NO CHANGES WERE MADE TO THE AUDIT OVERSIGHT PROCESS FOR THE CURRENT YEAR.