FAMILIES OF SMA: Form 990, tax year 2012
View the entire original 990 at ProPublica ↗
- Organization
- FAMILIES OF SMA (EIN 36-3320440)
- Tax period
- 2012-07-01 to 2013-06-30
- Filed
- 2013-11-08
- IRS object ID
- 201313129349301521
- Schema version
- 2012v2.1
- 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
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule G
- Schedule I
- Schedule M
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Timestamp | 2013-11-08T12:14:00-06:00 | Timestamp |
| Tax Period End Date | 2013-06-30 | TaxPeriodEndDate |
Preparer Firm PreparerFirm
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 591818353 | EIN |
Preparer Firm Business Name PreparerFirmBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | KAUFMAN ROSSIN & CO PA | BusinessNameLine1 |
Preparer Firm US Address PreparerFirmUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 2699 S BAYSHORE DRIVE | AddressLine1 |
| City | MIAMI | City |
| State | FL | State |
| ZIP Code | 33133 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnType |
| Tax Period Begin Date | 2012-07-01 | TaxPeriodBeginDate |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 363320440 | EIN |
Name Name
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FAMILIES OF SPINAL MUSCULAR ATROPHY | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Control | FAMI | NameControl |
| Phone | 8008861762 | Phone |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 925 BUSSE ROAD | AddressLine1 |
| City | ELK GROVE VILLAGE | City |
| State | IL | State |
| ZIP Code | 60007 | ZIPCode |
Officer Officer
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name | KENNETH HOBBY | Name |
| Title | PRESIDENT | Title |
| Phone | 8008861762 | Phone |
| Date Signed | 2013-10-24 | DateSigned |
| Authorize Third Party | 1 | AuthorizeThirdParty |
Preparer Preparer
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name | TANYA M FERREIRO CPA | Name |
| PTIN | P00450362 | PTIN |
| Phone | 3058585600 | Phone |
| Date Prepared | 2013-10-24 | DatePrepared |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax Year | 2012 | TaxYear |
| Build TS | 2016-02-24 21:20:13Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Of Principal Officer Person | KENNETH HOBBY | NameOfPrincipalOfficerPerson |
Address Principal Officer US AddressPrincipalOfficerUS
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 925 BUSSE ROAD | AddressLine1 |
| City | ELK GROVE VILLAGE | City |
| State | IL | State |
| ZIP Code | 60007 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | 5222835 | GrossReceipts |
| Group Return For Affiliates | 0 | GroupReturnForAffiliates |
| Organization501c3 | X | Organization501c3 |
| Web Site | WWW.CURESMA.ORG | WebSite |
| Type Of Organization Corporation | X | TypeOfOrganizationCorporation |
| Year Formation | 1984 | YearFormation |
| State Legal Domicile | IL | StateLegalDomicile |
| Activity Or Mission Description | DEVELOPING A TREATMENT AND CURE FOR SPINAL MUSCULAR ATROPHY; PROVIDING RESOURCES FOR PATIENTS & FAMILIES | ActivityOrMissionDescription |
| Nbr Voting Members Governing Body | 14 | NbrVotingMembersGoverningBody |
| Nbr Independent Voting Members | 13 | NbrIndependentVotingMembers |
| Total Nbr Employees | 20 | TotalNbrEmployees |
| Total Nbr Volunteers | 5000 | TotalNbrVolunteers |
| Total Gross UBI | 0 | TotalGrossUBI |
| Net Unrelated Business Txbl Income | 0 | NetUnrelatedBusinessTxblIncome |
| Contributions Grants Prior Year | 4241909 | ContributionsGrantsPriorYear |
| Contributions Grants Current Year | 4596877 | ContributionsGrantsCurrentYear |
| Program Service Revenue Prior Year | 243698 | ProgramServiceRevenuePriorYear |
| Program Service Revenue CY | 324212 | ProgramServiceRevenueCY |
| Investment Income Prior Year | 2108 | InvestmentIncomePriorYear |
| Investment Income Current Year | 13901 | InvestmentIncomeCurrentYear |
| Other Revenue Prior Year | 24839 | OtherRevenuePriorYear |
| Other Revenue Current Year | -2662 | OtherRevenueCurrentYear |
| Total Revenue Prior Year | 4512554 | TotalRevenuePriorYear |
| Total Revenue Current Year | 4932328 | TotalRevenueCurrentYear |
| Grants And Similar Amnts Prior Year | 1027417 | GrantsAndSimilarAmntsPriorYear |
| Grants And Similar Amnts CY | 1232668 | GrantsAndSimilarAmntsCY |
| Benefits Paid To Members Prior Year | 0 | BenefitsPaidToMembersPriorYear |
| Benefits Paid To Members CY | 0 | BenefitsPaidToMembersCY |
| Salaries Etc Prior Year | 990573 | SalariesEtcPriorYear |
| Salaries Etc Current Year | 1137972 | SalariesEtcCurrentYear |
| Total Prof Fundrsng Exp Prior Year | 0 | TotalProfFundrsngExpPriorYear |
| Total Prof Fundrsng Exp CY | 0 | TotalProfFundrsngExpCY |
| Total Fundrsng Exp Current Year | 997796 | TotalFundrsngExpCurrentYear |
| Other Expense Prior Year | 1709615 | OtherExpensePriorYear |
| Other Expenses Current Year | 2137256 | OtherExpensesCurrentYear |
| Total Expenses Prior Year | 3727605 | TotalExpensesPriorYear |
| Total Expenses Current Year | 4507896 | TotalExpensesCurrentYear |
| Revenues Less Expenses Prior Year | 784949 | RevenuesLessExpensesPriorYear |
| Revenues Less Expenses CY | 424432 | RevenuesLessExpensesCY |
| Total Assets BOY | 2594334 | TotalAssetsBOY |
| Total Assets EOY | 3439299 | TotalAssetsEOY |
| Total Liabilities BOY | 973670 | TotalLiabilitiesBOY |
| Total Liabilities EOY | 1394203 | TotalLiabilitiesEOY |
| Net Assets Or Fund Balances BOY | 1620664 | NetAssetsOrFundBalancesBOY |
| Net Assets Or Fund Balances EOY | 2045096 | NetAssetsOrFundBalancesEOY |
| Info In Schedule O Part III | X | InfoInScheduleOPartIII |
| Mission Description | FAMILIES OF 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 $50 MILLION IN RESEARCH AND BEEN INVOLVED IN FUNDING HALF OF ALL THE ONGOING NOVEL DRUG PROGRAMS FOR SMA. FAMILIES OF SMA IS A NONPROFIT 501(C)(3) ORGANIZATION, WITH 31 CHAPTERS AND 85,000 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. | MissionDescription |
| Significant New Program Services | 0 | SignificantNewProgramServices |
| Significant Change | 0 | SignificantChange |
| Expense | 1123351 | Expense |
| Revenue | 20344 | Revenue |
| Description | FAMILIES OF SMA PROVIDES INVALUABLE SUPPORT AND SERVICES TO INDIVIDUALS AND FAMILIES SUCH AS MEDICAL INFORMATION, EQUIPMENT, FAMILY SUPPORT AND RESOURCES. LOCAL COMMUNITY SUPPORT IS AVAILABLE THROUGH OUR VAST VOLUNTEER NETWORK. FOR NEWLY DIAGNOSED FAMILIES WE PROVIDE EMOTIONAL SUPPORT AND WILL PROVIDE A COMPREHENSIVE INFORMATIONAL PACKET AS WELL AS A CARE PACKAGE OF TOYS FOR EACH CHILD, SPECIFIC TO THE DISEASE TYPE. FSMA HAS COMPREHENSIVE INFORMATION AVAILABLE ON CRITICAL TOPICS IN SMA MEDICAL CARE INCLUDING GENETICS, RESPIRATORY CARE, NUTRITION AND MUCH MORE. OUR MEMBERS ARE PROVIDED A SUBSCRIPTION TO OUR FAMILY SUPPORT NEWSLETTER CALLED DIRECTIONS THAT IS DEDICATED TO NEWS AND PROGRESS. COMPASS NEWSLETTER FOCUSES ON RESEARCH UPDATES, HIGHLIGHTING ALL MAJOR RESEARCH DEVELOPMENTS. WE OFFER SUPPORT PROGRAMS SUCH AS THE EQUIPMENT POOL, FREE OF CHARGE TO MEMBERS TO FAMILIES OF SMA. THE POOL INCLUDES A WIDESPREAD LIST OF EQUIPMENT SUITABLE FOR SMA CHILDREN. WE ALSO OFFER THE ASK THE EXPERT SERVICE WHERE FAMILIES CAN GET ANSWERS TO IMPORTANT HEALTH-RELATED QUESTIONS FROM SMA PHYSICIANS AND CLINICIANS | Description |
Activity2 Activity2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 1609837 | Expense |
| Grants | 1232668 | Grants |
| Description | FAMILIES OF SMA HAS FUNDED NEARLY TWO THIRDS OF ALL THE ONGOING DRUG PROGRAMS FOR SMA. IN THE PAST 18 MONTHS, FSMA HAS FUNDED FIVE ADDITIONAL NEW DRUG PROGRAMS, INCLUDING THE FOLLOWING IN JUST THE PAST FEW MONTHS: ASSESSING SECOND-GENERATION ASO SEQUENCES FOR SMA; USING A PATIENT DERIVED MOTOR NEURON SCREEN TO IDENTIFY NOVEL SMA THERAPEUTICS; AND TESTING IN SMA MICE A DRUG THAT ENHANCES MUSCLE FUNCTION NOW IN PHASE II TRIALS FOR ALS. DEVELOPING NEW THERAPIES TO TREAT AND ULTIMATELY CURE SMA IS THE DRIVING FORCE BEHIND FAMILIES OF SMA. TO ACHIEVE THIS GOAL, FAMILIES OF SMA AGGRESSIVELY INVESTS IN BASIC RESEARCH TO IDENTIFY THERAPEUTIC APPROACHES AND THEN APPLIED DRUG DEVELOPMENT TO MAKE DRUGS. FSMA HAS FUNDED ALMOST TWO THIRDS OF ALL THE ONGOING DRUG PROGRAMS FOR SMA. CLEAR EVIDENCE OF PROGRESS IS BEING SEEN: 1) PROGRAMS ARE ADVANCING INTO THE CLINICAL TRIAL STAGE OF TESTING. 2) THERE IS BROAD DIVERSITY OF APPROACHES IN DEVELOPMENT. 3) THE TOTAL NUMBER OF PROGRAMS IS GROWING. 4) FUNDING AND RESOURCES FROM GOVERNMENT AND INDUSTRY ARE INCREASING. CLINICAL PROGRAMSOUR COMMUNITY HAS SEEN SUCCESS OVER RECENT YEARS IN ADVANCING BASIC RESEARCH DISCOVERIES FROM THE BENCH TO THE CLINIC. THERE ARE NOW 3 NOVEL PROGRAMS TESTING DRUGS IN HUMAN CLINICAL TRIALS FOR SMA:FAMILIES OF SMA IS ATTACKING THE DISEASE FROM EVERY ANGLE POSSIBLE, AND THERE ARE NOW MORE NEW DRUG PROGRAMS IN DEVELOPMENT THAN AT ANY OTHER TIME. | Description |
Activity3 Activity3
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 546564 | Expense |
| Revenue | 324212 | Revenue |
| Description | FAMILIES OF SMA HOSTED ITS 17TH ANNUAL NATIONAL CONFERENCE AT DISNEYLAND IN ANAHEIM, CA. OVER 1350 FAMILIES AND MEMBERS OF THE SCIENTIFIC COMMUNITY PARTICIPATED AND WERE FROM 23 COUNTRIES AROUND THE WORLD. THE CONFERENCE PROVIDES NETWORKING OPPORTUNITIES WITH OTHER FAMILIES, WORKSHOPS AND MEMORABLE CHILDRENS PROGRAMING. IT IS THE GOAL OF FAMILIES OF SMA TO PROVIDE THE FAMILIES WITH THE OPPORTUNITY TO INTERACT WITH RESEARCHERS AND MEDICAL PROVIDERS TO SHARE IDEAS AND HOPE FOR THE FUTURE. | Description |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expense | 3279752 | TotalProgramServiceExpense |
| Described In501 C3 | 1 | DescribedIn501C3 |
| Schedule B Required | 1 | ScheduleBRequired |
| Political Activities | 0 | PoliticalActivities |
| Lobbying Activities | 1 | LobbyingActivities |
| Subject To Proxy Tax | 0 | SubjectToProxyTax |
| Donor Advised Funds | 0 | DonorAdvisedFunds |
| Conservation Easements | 0 | ConservationEasements |
| Collections Of Art | 0 | CollectionsOfArt |
| Credit Counseling | 0 | CreditCounseling |
| Term Or Permanent Endowments | 1 | TermOrPermanentEndowments |
| Report Land Bldg Equip | 1 | ReportLandBldgEquip |
| Report Invest Oth Securities | 0 | ReportInvestOthSecurities |
| Report Prog Rel Invest | 0 | ReportProgRelInvest |
| Report Other Assets | 0 | ReportOtherAssets |
| Report Other Liabilities | 0 | ReportOtherLiabilities |
| Report Fin48 Footnote | 1 | ReportFin48Footnote |
| Independent Audit Financial Stmt | 1 | IndependentAuditFinancialStmt |
| Consolidated Audit Financial Stmt | 0 | ConsolidatedAuditFinancialStmt |
| School | 0 | School |
| Foreign Office | 0 | ForeignOffice |
| Foreign Activities | 0 | ForeignActivities |
| More Than5000 K To Organizations | 0 | MoreThan5000KToOrganizations |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividuals |
| Professional Fundraising | 0 | ProfessionalFundraising |
| Fundraising Activities | 1 | FundraisingActivities |
| Gaming | 0 | Gaming |
| Hospital | 0 | Hospital |
| Grants To Organizations | 1 | GrantsToOrganizations |
| Grants To Individuals | 0 | GrantsToIndividuals |
| Schedule J Required | 0 | ScheduleJRequired |
| Tax Exempt Bonds | 0 | TaxExemptBonds |
| Excess Benefit Transaction | 0 | ExcessBenefitTransaction |
| Prior Excess Benefit Transaction | 0 | PriorExcessBenefitTransaction |
| Loan To Officer Or DQP | 0 | LoanToOfficerOrDQP |
| Grant To Related Person | 0 | GrantToRelatedPerson |
| Bsnss Rltnshp With Organization | 0 | BsnssRltnshpWithOrganization |
| Bsnss Rltnshp Thru Family Member | 0 | BsnssRltnshpThruFamilyMember |
| Officer Entity With Bsnss Rltnshp | 0 | OfficerEntityWithBsnssRltnshp |
| Deductible Non Cash Contributions | 1 | DeductibleNonCashContributions |
| Deductible Contributions Of Art | 0 | DeductibleContributionsOfArt |
| Terminated | 0 | Terminated |
| Partial Liquidation | 0 | PartialLiquidation |
| Disregarded Entity | 0 | DisregardedEntity |
| Related Entity | 0 | RelatedEntity |
| Related Org Controlled Entity | 0 | RelatedOrgControlledEntity |
| Transfers To Exempt Non Chrtbl Org | 0 | TransfersToExemptNonChrtblOrg |
| Activities Conducted Partnership | 0 | ActivitiesConductedPartnership |
| Schedule O Required | 1 | ScheduleORequired |
| Number Forms Transmitted With1096 | 25 | NumberFormsTransmittedWith1096 |
| Number W2 G Included | 0 | NumberW2GIncluded |
| Number Of Employees | 20 | NumberOfEmployees |
| Employment Tax Returns Filed | 1 | EmploymentTaxReturnsFiled |
| Unrelated Business Income | 0 | UnrelatedBusinessIncome |
| Foreign Financial Account | 0 | ForeignFinancialAccount |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTrans |
| Taxable Party Notification | 0 | TaxablePartyNotification |
| Non Deductible Contributions | 0 | NonDeductibleContributions |
| Quid Pro Quo Contributions | 1 | QuidProQuoContributions |
| Quid Pro Quo Disclosure | 1 | QuidProQuoDisclosure |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOf |
| Funds To Pay Premiums | 0 | FundsToPayPremiums |
| Premiums Paid | 0 | PremiumsPaid |
| Indoor Tanning Services | 0 | IndoorTanningServices |
| Info In Schedule O Part VI | X | InfoInScheduleOPartVI |
| Nbr Voting Governing Body Members | 14 | NbrVotingGoverningBodyMembers |
| Number Independent Voting Members | 13 | NumberIndependentVotingMembers |
| Family Or Business Relationship | 0 | FamilyOrBusinessRelationship |
| Delegation Of Management Duties | 0 | DelegationOfManagementDuties |
| Changes To Organizing Docs | 0 | ChangesToOrganizingDocs |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuse |
| Members Or Stockholders | 0 | MembersOrStockholders |
| Election Of Board Members | 0 | ElectionOfBoardMembers |
| Decisions Subject To Approval | 0 | DecisionsSubjectToApproval |
| Minutes Of Governing Body | 1 | MinutesOfGoverningBody |
| Minutes Of Committees | 1 | MinutesOfCommittees |
| Officer Mailing Address | 0 | OfficerMailingAddress |
| Local Chapters | 1 | LocalChapters |
| Policies Reference Chapters | 1 | PoliciesReferenceChapters |
| Form990 Provided To Governing Body | 1 | Form990ProvidedToGoverningBody |
| Conflict Of Interest Policy | 1 | ConflictOfInterestPolicy |
| Annual Disclosure Covered Persons | 1 | AnnualDisclosureCoveredPersons |
| Regular Monitoring Enforcement | 1 | RegularMonitoringEnforcement |
| Whistleblower Policy | 1 | WhistleblowerPolicy |
| Document Retention Policy | 1 | DocumentRetentionPolicy |
| Compensation Process CEO | 1 | CompensationProcessCEO |
| Compensation Process Other | 1 | CompensationProcessOther |
| Investment In Joint Venture | 0 | InvestmentInJointVenture |
| States Where Copy Of Return Is Filed | AL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | AZ | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CO | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CT | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | FL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | IA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | IL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | KS | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | LA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MI | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | AK | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MN | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NJ | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NY | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | OH | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | PA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | TN | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | TX | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | WA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | WI | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NM | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NC | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | SC | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | UT | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | AR | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | KY | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | OR | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | ME | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | WV | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | GA | StatesWhereCopyOfReturnIsFiled |
| Own Website | X | OwnWebsite |
| Upon Request | X | UponRequest |
The Books Are In Care Of TheBooksAreInCareOf
Name Business NameBusiness
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | KENNETH HOBBY | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Telephone Number | 8008861762 | TelephoneNumber |
Address US AddressUS
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 925 BUSSE ROAD | AddressLine1 |
| City | ELK GROVE VILLAGE | City |
| State | IL | State |
| ZIP Code | 60007 | ZIPCode |
Form990 Part VII Section A Form990PartVIISectionA (15 entries)
| TitleTitle | Average Hours Per WeekAverageHoursPerWeek | Individual Trustee Or DirectorIndividualTrusteeOrDirector | OfficerOfficer | Reportable Comp From OrganizationReportableCompFromOrganization | Reportable Comp From Related OrgsReportableCompFromRelatedOrgs | Other CompensationOtherCompensation | Highest Compensated EmployeeHighestCompensatedEmployee |
|---|---|---|---|---|---|---|---|
| PAULA BARRETT | |||||||
| BOARD CHAIR | 12.00 | X | X | 0 | 0 | 0 | |
| KENNETH HOBBY | |||||||
| PRESIDENT | 70.00 | X | X | 146682 | 0 | 3318 | |
| STEVE RAGLAND | |||||||
| SECRETARY | 2.00 | X | X | 0 | 0 | 0 | |
| RICHARD RUBENSTEIN | |||||||
| TREASURER | 6.00 | X | X | 0 | 0 | 0 | |
| ADI RAPPOPORT | |||||||
| DIRECTOR | 6.00 | X | 0 | 0 | 0 | ||
| NATALIE GIBBS | |||||||
| DIRECTOR | 2.00 | X | 0 | 0 | 0 | ||
| ROCCO ARIZZI | |||||||
| DIRECTOR | 2.00 | X | 0 | 0 | 0 | ||
| MARY MCHALE | |||||||
| DIRECTOR | 2.00 | X | 0 | 0 | 0 | ||
| DOUGLAS ERWIN | |||||||
| DIRECTOR | 2.00 | X | 0 | 0 | 0 | ||
| ROBERT LOCKWOOD | |||||||
| DIRECTOR | 2.00 | X | 0 | 0 | 0 | ||
| MELISSA MILINOVICH | |||||||
| DIRECTOR | 2.00 | X | 0 | 0 | 0 | ||
| JUSTIN KUESTER | |||||||
| DIRECTOR | 2.00 | X | 0 | 0 | 0 | ||
| BARB TRAINOR | |||||||
| DIRECTOR | 2.00 | X | 0 | 0 | 0 | ||
| BRAD NUNEMAKER | |||||||
| DIRECTOR | 2.00 | X | 0 | 0 | 0 | ||
| JILL JARECKI | |||||||
| RESEARCH DIRECTOR | 30.00 | 120960 | 0 | 0 | X | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | 267642 | TotalReportableCompFromOrg |
| Total Reportable Comp Frm Rltd Orgs | 0 | TotalReportableCompFrmRltdOrgs |
| Total Other Compensation | 3318 | TotalOtherCompensation |
| Number Individuals GT100 K | 2 | NumberIndividualsGT100K |
| Formers Listed | 0 | FormersListed |
| Total Comp GT150 K | 0 | TotalCompGT150K |
| Compensation From Other Sources | 0 | CompensationFromOtherSources |
| Number Of Contractors GT100 K | 0 | NumberOfContractorsGT100K |
| Fundraising Events | 2940117 | FundraisingEvents |
| Government Grants | 20000 | GovernmentGrants |
| All Other Contributions | 1636760 | AllOtherContributions |
| Noncash Contributions | 121497 | NoncashContributions |
| Total Contributions | 4596877 | TotalContributions |
Program Service Revenue ProgramServiceRevenue
| Field | Value | IRS element (for citing) |
|---|---|---|
| Description | ANNUAL CONFERENCE | Description |
| Business Code | 900099 | BusinessCode |
| Total Revenue Column | 324212 | TotalRevenueColumn |
| Related Or Exempt Function Income | 324212 | RelatedOrExemptFunctionIncome |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | 324212 | TotalProgramServiceRevenue |
Investment Income InvestmentIncome
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 2391 | TotalRevenueColumn |
| Exclusion | $2,391 | ExclusionAmount |
Gross Amount Sales Assets GrossAmountSalesAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | 13658 | Securities |
Less Cost Oth Basis Sales Expenses LessCostOthBasisSalesExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | 2148 | Securities |
Gain Or Loss GainOrLoss
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | 11510 | Securities |
Net Gain Or Loss Investments NetGainOrLossInvestments
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 11510 | TotalRevenueColumn |
| Exclusion | $11,510 | ExclusionAmount |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Income Fundraising Events | 265353 | GrossIncomeFundraisingEvents |
| Cntrbtns Rprtd Fundraising Events | 2940117 | CntrbtnsRprtdFundraisingEvents |
| Fundraising Direct Expenses | 288359 | FundraisingDirectExpenses |
Net Income From Fundraising Events NetIncomeFromFundraisingEvents
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -23006 | TotalRevenueColumn |
| Exclusion | -$23,006 | ExclusionAmount |
Other Revenue Misc OtherRevenueMisc
| Field | Value | IRS element (for citing) |
|---|---|---|
| Description | MISCELLANEOUS | Description |
| Business Code | 900099 | BusinessCode |
| Total Revenue Column | 20344 | TotalRevenueColumn |
| Related Or Exempt Function Income | 20344 | RelatedOrExemptFunctionIncome |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Revenue | 20344 | TotalOtherRevenue |
Total Revenue TotalRevenue
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 4932328 | TotalRevenueColumn |
| Related Or Exempt Function Income | 344556 | RelatedOrExemptFunctionIncome |
| Unrelated Business Revenue | 0 | UnrelatedBusinessRevenue |
| Exclusion | -$9,105 | ExclusionAmount |
Grants To Domestic Orgs GrantsToDomesticOrgs
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 1232668 | Total |
| Program Services | 1232668 | ProgramServices |
Comp Current Officers Directors CompCurrentOfficersDirectors
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 161461 | Total |
| Program Services | 107641 | ProgramServices |
| Management And General | 26910 | ManagementAndGeneral |
| Fundraising | 26910 | Fundraising |
Other Salaries And Wages OtherSalariesAndWages
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 857287 | Total |
| Program Services | 519594 | ProgramServices |
| Management And General | 80644 | ManagementAndGeneral |
| Fundraising | 257049 | Fundraising |
Other Employee Benefits OtherEmployeeBenefits
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 38727 | Total |
| Program Services | 23735 | ProgramServices |
| Management And General | 1295 | ManagementAndGeneral |
| Fundraising | 13697 | Fundraising |
Payroll Taxes PayrollTaxes
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 80497 | Total |
| Program Services | 38490 | ProgramServices |
| Management And General | 6635 | ManagementAndGeneral |
| Fundraising | 35372 | Fundraising |
Fees For Services Legal FeesForServicesLegal
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 64328 | Total |
| Program Services | 64328 | ProgramServices |
Fees For Services Accounting FeesForServicesAccounting
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 34099 | Total |
| Program Services | 19745 | ProgramServices |
| Management And General | 9418 | ManagementAndGeneral |
| Fundraising | 4936 | Fundraising |
Fees For Services Lobbying FeesForServicesLobbying
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 53086 | Total |
| Program Services | 51736 | ProgramServices |
| Management And General | 1350 | ManagementAndGeneral |
Fees For Services Other FeesForServicesOther
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 137123 | Total |
| Program Services | 81090 | ProgramServices |
| Management And General | 22597 | ManagementAndGeneral |
| Fundraising | 33436 | Fundraising |
Advertising Advertising
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 42119 | Total |
| Program Services | 28450 | ProgramServices |
| Management And General | 7036 | ManagementAndGeneral |
| Fundraising | 6633 | Fundraising |
Office Expenses OfficeExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 294217 | Total |
| Program Services | 189731 | ProgramServices |
| Management And General | 16054 | ManagementAndGeneral |
| Fundraising | 88432 | Fundraising |
Information Technology InformationTechnology
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 124590 | Total |
| Program Services | 110331 | ProgramServices |
| Fundraising | 14259 | Fundraising |
Occupancy Occupancy
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 70039 | Total |
| Program Services | 46693 | ProgramServices |
| Management And General | 11673 | ManagementAndGeneral |
| Fundraising | 11673 | Fundraising |
Travel Travel
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 51223 | Total |
| Program Services | 25544 | ProgramServices |
| Management And General | 25535 | ManagementAndGeneral |
| Fundraising | 144 | Fundraising |
Conferences Meetings ConferencesMeetings
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 592023 | Total |
| Program Services | 587143 | ProgramServices |
| Management And General | 79 | ManagementAndGeneral |
| Fundraising | 4801 | Fundraising |
Depreciation Depletion DepreciationDepletion
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 34179 | Total |
| Program Services | 29720 | ProgramServices |
| Management And General | 2144 | ManagementAndGeneral |
| Fundraising | 2315 | Fundraising |
Insurance Insurance
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 12721 | Total |
| Program Services | 8481 | ProgramServices |
| Management And General | 2120 | ManagementAndGeneral |
| Fundraising | 2120 | Fundraising |
Other Expenses OtherExpenses (4 entries)
| DescriptionDescription | TotalTotal | Program ServicesProgramServices | Management And GeneralManagementAndGeneral | FundraisingFundraising |
|---|---|---|---|---|
| FUNDRAISING EVENTS | 532755 | 64479 | 11372 | 456904 |
| PATIENT SERVICES | 54758 | 46934 | 7824 | |
| MERCHANDISE | 29667 | 29667 | ||
| MISCELLANEOUS | 10329 | 3219 | 5486 | 1624 |
Total Functional Expenses TotalFunctionalExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 4507896 | Total |
| Program Services | 3279752 | ProgramServices |
| Management And General | 230348 | ManagementAndGeneral |
| Fundraising | 997796 | Fundraising |
Cash Non Interest Bearing CashNonInterestBearing
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1470911 | BOY |
| EOY | 2644145 | EOY |
Savings And Temp Cash Investments SavingsAndTempCashInvestments
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 739867 | BOY |
| EOY | 411463 | EOY |
Pledges And Grants Receivable PledgesAndGrantsReceivable
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 222704 | BOY |
| EOY | 149349 | EOY |
Accounts Receivable AccountsReceivable
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 11015 | BOY |
| EOY | 55490 | EOY |
Prepaid Expenses Deferred Charges PrepaidExpensesDeferredCharges
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 11755 | BOY |
| EOY | 0 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Buildings Equipment Basis | 426368 | LandBuildingsEquipmentBasis |
| Land Bldg Equipment Accum Deprec | 289774 | LandBldgEquipmentAccumDeprec |
Land Buildings Equipment Basis Net LandBuildingsEquipmentBasisNet
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 95095 | BOY |
| EOY | 136594 | EOY |
Investments Pub Traded Securities InvestmentsPubTradedSecurities
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 729 | BOY |
| EOY | 0 | EOY |
Investments Other Securities InvestmentsOtherSecurities
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 36461 | BOY |
| EOY | 36461 | EOY |
Other Assets Total OtherAssetsTotal
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 5797 | BOY |
| EOY | 5797 | EOY |
Total Assets TotalAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 2594334 | BOY |
| EOY | 3439299 | EOY |
Accounts Payable Accrued Expenses AccountsPayableAccruedExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 428023 | BOY |
| EOY | 389641 | EOY |
Grants Payable GrantsPayable
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 545647 | BOY |
| EOY | 1004562 | EOY |
Total Liabilities TotalLiabilities
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 973670 | BOY |
| EOY | 1394203 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Follow SFAS117 | X | FollowSFAS117 |
Unrestricted Net Assets UnrestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1257728 | BOY |
| EOY | 1104164 | EOY |
Temporarily Restricted Net Assets TemporarilyRestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 142498 | BOY |
| EOY | 533986 | EOY |
Permanently Restricted Net Assets PermanentlyRestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 220438 | BOY |
| EOY | 406946 | EOY |
Total Net Assets Fund Balances TotalNetAssetsFundBalances
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1620664 | BOY |
| EOY | 2045096 | EOY |
Total Liab Net Assets Fund Balances TotalLiabNetAssetsFundBalances
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 2594334 | BOY |
| EOY | 3439299 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expenses | 424432 | ReconcilationRevenueExpenses |
| Reconcilation Other Changes | 0 | ReconcilationOtherChanges |
| Method Of Accounting Accrual | X | MethodOfAccountingAccrual |
| Accountant Compile Or Review | 0 | AccountantCompileOrReview |
| FS Audited | 1 | FSAudited |
FS Audited Basis FSAuditedBasis
| Field | Value | IRS element (for citing) |
|---|---|---|
| Financial Statement Separate | X | FinancialStatementSeparate |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | 1 | AuditCommittee |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequired |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Publicly Supported Org509a2 | X | PubliclySupportedOrg509a2 |
Gifts Grants Contrib Received509 GiftsGrantsContribReceived509
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 3759212 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 3553474 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 3603995 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 4241909 | CurrentTaxYearMinus1Year |
| Current Tax Year | 4596877 | CurrentTaxYear |
| Total | 19755467 | Total |
Gross Receipts From Admissions GrossReceiptsFromAdmissions
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 101901 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 2276 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 23488 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 23755 | CurrentTaxYearMinus1Year |
| Current Tax Year | 20344 | CurrentTaxYear |
| Total | 171764 | Total |
Gross Receipts From Non UBI GrossReceiptsFromNonUBI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus3 Years | 895824 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 837510 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 243698 | CurrentTaxYearMinus1Year |
| Current Tax Year | 324212 | CurrentTaxYear |
| Total | 2301244 | Total |
Total509 Total509
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 3861113 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 4451574 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 4464993 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 4509362 | CurrentTaxYearMinus1Year |
| Current Tax Year | 4941433 | CurrentTaxYear |
| Total | 22228475 | Total |
Amts Recd From Disqual Persons AmtsRecdFromDisqualPersons
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Amts From Subst Contributors AmtsFromSubstContributors
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Support From DQ Ps Etc SupportFromDQPsEtc
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Support Total509 | 22228475 | PublicSupportTotal509 |
Gross Investment Income509 GrossInvestmentIncome509
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 6111 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 2892 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 1278 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 2193 | CurrentTaxYearMinus1Year |
| Current Tax Year | 2391 | CurrentTaxYear |
| Total | 14865 | Total |
Investment Income And UBTI InvestmentIncomeAndUBTI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 6111 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 2892 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 1278 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 2193 | CurrentTaxYearMinus1Year |
| Current Tax Year | 2391 | CurrentTaxYear |
| Total | 14865 | Total |
Other Income509 OtherIncome509
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 468656 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 53666 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 80770 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 118750 | CurrentTaxYearMinus1Year |
| Current Tax Year | 265353 | CurrentTaxYear |
| Total | 987195 | Total |
Total Support Total TotalSupportTotal
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 4335880 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 4508132 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 4547041 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 4630305 | CurrentTaxYearMinus1Year |
| Current Tax Year | 5209177 | CurrentTaxYear |
| Total | 23230535 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Support Percentage509 | 0.95690 | PublicSupportPercentage509 |
| Prior Year Support Percentage | 0.85820 | PriorYearSupportPercentage |
| Investment Income Percentage | 0.00060 | InvestmentIncomePercentage |
| Prior Yr Invest Income Percentage | 0.00200 | PriorYrInvestIncomePercentage |
| Thirty Three Percnt Tests CY509 | X | ThirtyThreePercntTestsCY509 |
Schedule B IRS990ScheduleB
Contributor Info ContributorInfo
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor Number | RESTRICTED | ContributorNumber |
Contributor Name Business ContributorNameBusiness
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor Address US ContributorAddressUS
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Aggregate Contributions | RESTRICTED | AggregateContributions |
Schedule C IRS990ScheduleC
| Field | Value | IRS element (for citing) |
|---|---|---|
| Volunteers | 0 | Volunteers |
| Paid Staff Or Management | 0 | PaidStaffOrManagement |
| Media Advertisements | 0 | MediaAdvertisements |
| Mailings Members | 0 | MailingsMembers |
| Publications Or Broadcast | 0 | PublicationsOrBroadcast |
| Grants Other Organizations | 0 | GrantsOtherOrganizations |
| Direct Contact Legislators | 0 | DirectContactLegislators |
| Rallies Demonstrations | 0 | RalliesDemonstrations |
| Other Activities | 1 | OtherActivities |
| Other Activities | $53,086 | OtherActivitiesAmount |
| Total Lobbying Expenditures IIB | 53086 | TotalLobbyingExpendituresIIB |
| Not Described In501c3 | 0 | NotDescribedIn501c3 |
Form990 Schedule C Part IV Form990ScheduleCPartIV
| Field | Value | IRS element (for citing) |
|---|---|---|
| Identifier | EXPLANATION OF LOBBYING ACTIVITIES: | Identifier |
| Return Reference | PART II-B, LINE 1: | ReturnReference |
| Explanation | THE ORGANIZATION PAID WASHINGTON STRATEGIC CONSULTING, INC, A PROFESSIONAL LOBBYING FIRM, FEES TOTALING $53,086 TO LOBBY FOR LEGISLATION THAT BENEFITS THE ORGANIZATION'S MISSION AND TO KEEP THE ORGANIZATION'S MANAGEMENT INFORMED ABOUT LEGISLATION THAT MAY AFFECT THE ORGANIZATION'S MISSION. | Explanation |
Schedule D IRS990ScheduleD
Current Year CurrentYear
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Of Year Balance | 220438 | BeginningOfYearBalance |
| Contributions | 214976 | Contributions |
| Investment Earnings Or Losses | 1532 | InvestmentEarningsOrLosses |
| End Of Year Balance | 436946 | EndOfYearBalance |
Current Year Minus1 Year CurrentYearMinus1Year
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributions | 220438 | Contributions |
| End Of Year Balance | 220438 | EndOfYearBalance |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Designated EOY Balance | 0.06870 | BoardDesignatedEOYBalance |
| Permanent Endowment EOY Balance | 0.93130 | PermanentEndowmentEOYBalance |
| Endowments Held By Unrelated Orgs | 0 | EndowmentsHeldByUnrelatedOrgs |
| Endowments Held By Related Orgs | 0 | EndowmentsHeldByRelatedOrgs |
Equipment Equipment
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | 426368 | OtherCostOrOtherBasis |
| Depreciation | 289774 | Depreciation |
| Book Value | 136594 | BookValue |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Of Book Value Land Buildings | 136594 | TotalOfBookValueLandBuildings |
| Footnote In Part XIII | X | FootnoteInPartXIII |
| Tot Revenue Etc Audited Fincl Stmt | 5220687 | TotRevenueEtcAuditedFinclStmt |
| Other Revenues | 288359 | OtherRevenues |
| Revenue Not Rptd F990 | 288359 | RevenueNotRptdF990 |
| Revenue Subtotal | 4932328 | RevenueSubtotal |
| Revenue Not Rptd On Fin Stmt | 0 | RevenueNotRptdOnFinStmt |
| Total Revenue Per Form990 | 4932328 | TotalRevenuePerForm990 |
| Tot Expenses Etc Audited Fincl Stmt | 4796255 | TotExpensesEtcAuditedFinclStmt |
| Other Expenses Included | 288359 | OtherExpensesIncluded |
| Expenses Not Rptd F990 | 288359 | ExpensesNotRptdF990 |
| Expenses Subtotal | 4507896 | ExpensesSubtotal |
| Expenses Not Rptd On Fin Stmt | 0 | ExpensesNotRptdOnFinStmt |
| Total Expenses Per Form990 | 4507896 | TotalExpensesPerForm990 |
Form990 Schedule D Part XIII Form990ScheduleDPartXIII (3 entries)
| IdentifierIdentifier | Return ReferenceReturnReference | ExplanationExplanation |
|---|---|---|
| DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: | 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 EXPENSES 288,359. | |
| PART XII, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENT EXPENSES 288,359. |
Schedule G IRS990ScheduleG
Events Information EventsInformation
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Of Event1 | WALK & ROLL | NameOfEvent1 |
| Gross Receipts Event1 | 1364503 | GrossReceiptsEvent1 |
| Charitable Contributions Event1 | 1236274 | CharitableContributionsEvent1 |
| Gross Revenue Event1 | 128229 | GrossRevenueEvent1 |
| Other Direct Expenses Event1 | 124022 | OtherDirectExpensesEvent1 |
| Name Of Event2 | DINNERS / GALAS | NameOfEvent2 |
| Gross Receipts Event2 | 609530 | GrossReceiptsEvent2 |
| Charitable Contributions Event2 | 472406 | CharitableContributionsEvent2 |
| Gross Revenue Event2 | 137124 | GrossRevenueEvent2 |
| Other Direct Expenses Event2 | 164337 | OtherDirectExpensesEvent2 |
| Total Number Of Other Events | 207 | TotalNumberOfOtherEvents |
| Gross Receipts Other Events | 1231437 | GrossReceiptsOtherEvents |
| Charitable Contrib Other Events | 1231437 | CharitableContribOtherEvents |
| Gross Receipts Total | 3205470 | GrossReceiptsTotal |
| Charitable Contributions Total | 2940117 | CharitableContributionsTotal |
| Gross Revenue Total Events | 265353 | GrossRevenueTotalEvents |
| Other Direct Expenses Total Events | 288359 | OtherDirectExpensesTotalEvents |
| Direct Expense Summary Events | 288359 | DirectExpenseSummaryEvents |
| Net Income Summary | -23006 | NetIncomeSummary |
Form990 Schedule G Part IV Form990ScheduleGPartIV
| Field | Value | IRS element (for citing) |
|---|---|---|
| Identifier | EXPLANATION OF SPECIAL EVENTS | Identifier |
| Return Reference | FORM 990, SCHEDULE D, PART II, FUNDRAISING EVENTS | ReturnReference |
| Explanation | FAMILIES OF SMA HAS MULTIPLE CHAPTERS IN MANY STATES WHOSE PURPOSE IS TO RAISE FUNDS FOR THE ORGANIZATION. THE AMOUNTS LISTED IN COLUMNS (A) AND (C) ARE SUMMARY AMOUNTS FOR MULTIPLE SIMILAR EVENTS HELD THROUGH OUT THE COUNTRY. AMOUNTS LISTED IN COLUMN (C) ARE FOR A VARIETY OF EVENTS HELD BY CHAPTERS THROUGHOUT THE COUNTRY. COLUMN (A): PARTICIPANTS IN THE WALK AND ROLL EVENTS RECEIVE NO DIRECT BENEFITS OTHER THAN A TEE-SHIRT AND ACCESS TO BEVERAGES ALONG THE RACE PATH AND AT THE END OF THE RACE PATH. COLUMN (C): OTHER EVENTS ARE SIMILAR IN NATURE TO THE FSMA WALK AND ROLLS, SUCH AS FUN-RUNS OR 5K RUNS, AND NO OTHER BENEFITS ARE RECEIVED OTHER THAN A TEE-SHIRT OR RACE BEVERAGES. OTHER EVENTS ARE NOT HELD UNDER THE NATIONALLY BRANDED NAME "WALK AND ROLL" WHICH ARE COORDINATED AND PROMOTED AS A NATION-WIDE FUNDRAISING EVENT BY FSMA. | Explanation |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Records Maintained | 1 | RecordsMaintained |
Recipient Table RecipientTable (15 entries)
| Address Line1AddressUS/AddressLine1 | CityAddressUS/City | StateAddressUS/State | ZIP CodeAddressUS/ZIPCode | EIN Of RecipientEINOfRecipient | IRC SectionIRCSection | Amount Of Cash GrantAmountOfCashGrant | Purpose Of GrantPurposeOfGrant | Address Line2AddressUS/AddressLine2 |
|---|---|---|---|---|---|---|---|---|
| THE OHIO STATE UNIVERSITY RESEARCH FOUNDATION | ||||||||
| 1960 KENNY ROAD | COLUMBUS | OH | 43210 | 316025986 | 501(C)(3) | 112700 | VALIDATION OF SMA BIOMARKERS IN VALIANT SUBJECTS | |
| TRUSTEES OF INDIANA UNIVERSITY | ||||||||
| 620 UNION DRIVE RM 518 | INDIANAPOLIS | IN | 46202 | 356001673 | 501(C)(3) | 140000 | THE ROLE OF VESICLE COAT PROTEIN A-COP IN THE NEW MODELS OF SMATHE ROLE OF VESICLE COAT PROTEIN A-COP IN THE NEW MODELS OF SMA | |
| INDIANA UNIVERSITY | ||||||||
| 620 UNION DRIVE RM 518 | INDIANAPOLIS | IN | 46202 | 356001373 | 501(C)(3) | 30000 | IDENTIFY AND RECRUIT SMA PATIENTS AND FAMILIES. TRACK RESEARCH STUDIES, EXPAND AWARENESS AND THE USE OF THE REGISTRY. | |
| THE UNIVERSITY OF SOUTHERN CALIFORNIA | ||||||||
| 837 DOWNEY WAY | LOS ANGELES | CA | 96150 | 956006143 | 501(C)(3) | 75000 | RESEARCH OF NOVEL NEUROMUSCULAR PREPARATIONS | |
| THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL | ||||||||
| 700 CHILDRENS DRIVE | COLUMBUS | OH | 43205 | 311036372 | 501(C)(3) | 25000 | IND ENABLINGS STUDIES FOR A CNS DELIVERED GENE THERAPY | |
| UNIVERSITY OF UTAH | ||||||||
| 201 S PRESDIENTS CIRCLE RM 406A | SALT LAKE CITY | UT | 84112 | 876000525 | 501(C)(3) | 60056 | PILOT STUD OF GLUCOSE LOAD TOLERANCE AND FASTING IN SMA TYPE II | |
| THE CHILDREN'S HOSPITAL OF PA | ||||||||
| 3615 CIVIC CENTER BLVD SUITE ARC | PHILADELPHIA | PA | 19104 | 231352166 | 501(C)(3) | 50000 | DECISIONS RELATED TO GOALS AND LIMITATIONS OF CARE AND THE CHALLENGES IN MAKING THEM FOR PARENTS OF CHILDREN WITH SMA | 142 |
| BAYLOR COLLEGE OF MEDICINE | ||||||||
| ONE BAYLOR PLAZA BCM 206 | HOUSTON | TX | 77030 | 741613878 | 501(C)(3) | 49912 | A QUALITY IMPROVEMENT PROJECT TO REDUCE GAPS IN CARE IN THE HOSPITAL SETTING | |
| JOHNS HOPKINS UNIVERSITY | ||||||||
| 855 N WOLFE STREET RANGOS 242 | BALITMORE | MD | 21205 | 520595110 | 501(C)(3) | 140000 | MOTOR AXON DEVELOPMENT IN SMA | |
| PARENT PROJECT MUSCULAR DYSTROPHY | ||||||||
| 401 HACKENSACK AVE 9TH FL | HACKENSACK | NJ | 07601 | 311405490 | 501(C)(3) | 10000 | COLLECT DATA FOR PARENTS | |
| PRESIDENT & FELLOWS OF HARVARD COLLEGE | ||||||||
| 1350 MASSACHUSSETS AVE HOLYOKE | CAMBRIDGE | MA | 02138 | 042103580 | 501(C)(3) | 150000 | A PATIENT-DERIVED MOTOR NEURON SCREEN TO IDENTIFY NOVEL SMA THERAPEUTICS | CENTER STE 600 |
| CYTOKINETICS INC | ||||||||
| 280 E GRAND AVE SO | SAN FRANCISCO | CA | 94080 | 943291317 | 100000 | EFFECT OF THE FAST SKELETAL MUSCLE TROPONIN ACTIVATOR ON PERIPHERAL SKELETAL MUSCLE FUNCTION | ||
| THE CURATORS OF THE UNIVERSITY OF MISSOURI | ||||||||
| OFFICE OF SPONSORED PROGRAMS | COLUMBIA | MO | 65211 | 436003859 | 501(C)(3) | 75000 | MORPHOLINO ANTISENSE OLIGONUCLEOTIDES FOR THE TREATMENT OF SPINAL MUSCULAR ATROPHY | ADMINISTRATION 310 JESSE HALL |
| LURIE CHILDREN'S HOSPITAL OF CHICAGO | ||||||||
| 255 E CHICAGO AVENUE | CHICAGO | IL | 60611 | 362170833 | 501(C)(3) | 75000 | THE WHEN AND WHERE REQUIREMENTS OF SMN IN MILD SMA. | |
| LURIE CHILDREN'S HOSPITAL OF CHICAGO | ||||||||
| 255 E CHICAGO AVENUE | CHICAGO | IL | 60611 | 362170833 | 501(C)(3) | 140000 | REGULATION OF HDAC5 PHOSPHORYLATION BY CDK5 IN SMA. | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Nbr Of501 C3 And Govt Grants | 16 | TotalNbrOf501C3AndGovtGrants |
Form990 Schedule I Part IV Form990ScheduleIPartIV (2 entries)
| IdentifierIdentifier | Return ReferenceReturnReference | ExplanationExplanation |
|---|---|---|
| PROCEDURE FOR MONITORING GRANTS IN THE U.S.: | PART I, LINE 2: | SCHEDULE I, 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 II | GRANTS AND OTHER ASSISTANCE TO ORGANIZATIONS IN THE UNITED STATES: | CERTAIN 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 $730,000. |
Schedule M IRS990ScheduleM
Other Non Cash Contributions Table OtherNonCashContributionsTable (2 entries)
| Non Cash CheckboxNonCashCheckbox | DescriptionDescription | Number Of ContributionsNumberOfContributions | Noncash Contribs Rptd F990NoncashContribsRptdF990 | Method Of Determining RevenuesMethodOfDeterminingRevenues |
|---|---|---|---|---|
| X | SEE PART II | 5 | 117821 | RETAIL RENTAL VALUE |
| X | SEE PART II | 1 | 3676 | RETAIL VALUE |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeld |
| Review Process Unusual NC Gifts | 0 | ReviewProcessUnusualNCGifts |
| Third Parties Used | 0 | ThirdPartiesUsed |
Form990 Schedule M Part II Form990ScheduleMPartII
| Field | Value | IRS element (for citing) |
|---|---|---|
| Identifier | NON REPORTING OF REVENUE: | Identifier |
| Return Reference | PART I, LINE 33: | ReturnReference |
| Explanation | SCHEDULE M, LINE 33: PAGE 1, LINE 25: DONATED RENTAL EQUIPMENT FOR SPECIAL EVENTS PAGE 1, LINE 26: DONATED SIGNAGE FOR SPECIAL EVENTS | Explanation |
Schedule O IRS990ScheduleO
General Explanation GeneralExplanation (5 entries)
| Return ReferenceReturnReference | ExplanationExplanation |
|---|---|
| FORM 990, PART VI, SECTION B, LINE 11 | THE EXECUTIVE COMMITTEE OF THE BOARD AND THE PRESIDENT PERFORM AN INITIAL REVIEW OF FORM 990. AFTER ACCEPTANCE OF FORM 990 BY THE EXECUTIVE COMMITTEE OF THE BOARD AND THE PRESIDENT, FORM 990 IS EMAILED TO THE FULL BOARD FOR REVIEW AND COMMENT BEFORE IT IS FILED. |
| FORM 990, PART VI, SECTION B, LINE 12C | MEMBERS 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 15 | PRESIDENT'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 19 | FORM 990, PART VI, SECTION C, LINE 19: THE 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. |
Comments