FAMILIES OF SMA: Form 990, tax year 2018
View the entire original 990 at ProPublica ↗
- Organization
- FAMILIES OF SMA (EIN 36-3320440)
- Tax period
- 2018-07-01 to 2019-06-30
- Filed
- 2019-12-19
- IRS object ID
- 201903539349301200
- Schema version
- 2018v3.1
- 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 F
- Schedule G
- Schedule I
- Schedule J
- Schedule M
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2019-12-19T08:54:44-06:00 | ReturnTs |
| Tax Period End | 2019-06-30 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 362170602 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | WARADY & DAVIS LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1717 DEERFIELD RD SUITE 300S | AddressLine1Txt |
| City | DEERFIELD | CityNm |
| State Abbreviation | IL | StateAbbreviationCd |
| ZIP | 60015 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2018-07-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 363320440 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FAMILIES OF SPINAL MUSCULAR ATROPHY | BusinessNameLine1Txt |
| Business Name Line2 | DBA CURE SMA | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | FAMI | BusinessNameControlTxt |
| Phone | 8477096318 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 925 BUSSE RD | AddressLine1Txt |
| City | ELK GROVE VILLAGE | CityNm |
| State Abbreviation | IL | StateAbbreviationCd |
| ZIP | 60007 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | KENNETH HOBBY | PersonNm |
| Person Title | PRESIDENT | PersonTitleTxt |
| Phone | 8477096318 | PhoneNum |
| Signature | 2019-12-19 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | SUSAN GREGGO | PreparerPersonNm |
| PTIN | P00595460 | PTIN |
| Phone | 8472679600 | PhoneNum |
Filing Security Information FilingSecurityInformation
IP Address IPAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| I Pv4 Address | 69.8.122.20 | IPv4AddressTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IP | 2019-12-19 | IPDt |
| IP Tm | 08:54:29 | IPTm |
| IP Timezone | CS | IPTimezoneCd |
| Filing License Type | P | FilingLicenseTypeCd |
| At Submission Creation Device Id | 95270F34E65FD9BD57135999DDDEA1966BA73AED | AtSubmissionCreationDeviceId |
| At Submission Filing Device Id | CCDFA09DC9BE18D62042912A262073B22479614C | AtSubmissionFilingDeviceId |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2018 | TaxYr |
| Build TS | 2020-04-17 16:48:07Z | BuildTS |
Form 990 IRS990
Doing Business As Name DoingBusinessAsName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CURE SMA | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | KENNETH HOBBY | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 925 BUSSE RD | AddressLine1Txt |
| City | ELK GROVE VILLAGE | CityNm |
| State Abbreviation | IL | StateAbbreviationCd |
| ZIP | 60007 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $15,399,586 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.CURESMA.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1984 | FormationYr |
| Legal Domicile State | IL | LegalDomicileStateCd |
| Activity Or Mission | CURE 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 Body | 22 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 22 | VotingMembersIndependentCnt |
| Total Employee | 50 | TotalEmployeeCnt |
| Total Volunteers | 7100 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $10,804,912 | PYContributionsGrantsAmt |
| CY Contributions Grants | $9,307,212 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $1,164,295 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $2,007,413 | CYProgramServiceRevenueAmt |
| PY Investment Income | $38,580 | PYInvestmentIncomeAmt |
| CY Investment Income | $131,009 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$543,412 | PYOtherRevenueAmt |
| CY Other Revenue | $2,873,353 | CYOtherRevenueAmt |
| PY Total Revenue | $11,464,375 | PYTotalRevenueAmt |
| CY Total Revenue | $14,318,987 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $2,583,429 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $3,840,655 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $3,278,671 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $4,344,183 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $1,422,300 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $3,831,350 | PYOtherExpensesAmt |
| CY Other Expenses | $5,936,984 | CYOtherExpensesAmt |
| PY Total Expenses | $9,693,450 | PYTotalExpensesAmt |
| CY Total Expenses | $14,121,822 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $1,770,925 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $197,165 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $8,151,278 | TotalAssetsBOYAmt |
| Total Assets EOY | $10,376,286 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $3,195,356 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $5,271,480 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $4,955,922 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $5,104,806 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | CURE 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 Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $3,313,869 | ExpenseAmt |
| Grant | $1,387,184 | GrantAmt |
| Revenue | $32,658 | RevenueAmt |
| Desc | INDIVIDUALS 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $5,155,498 | ExpenseAmt |
| Grant | $2,091,503 | GrantAmt |
| Revenue | $0 | RevenueAmt |
| Desc | CURE 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 AND REGULATORY RESEARCH, TO PROVIDE THE INFRASTRUCTURE TO TEST THE DRUG CANDIDATES. DURING THIS PERIOD CURE SMA FUNDED 16 NEW AND ONGOING BASIC RESEARCH GRANTS, AS WELL AS TWO ONGOING AND TWO NEW DRUG DISCOVERY PROJECTS. WE ALSO FUNDED AND EXECUTED MULTIPLE CLINICAL AND REGULATORY FOCUSED PROJECTS, INCLUDING PROJECTS TO IMPLEMENT NEWBORN SCREENING FOR SMA AT THE STATE LEVEL, TO INCREASE THE NUMBER OF TRAINED SMA CLINICAL TRIALS SITES IN THE US, AND TO UNDERSTAND THE PATIENT EXPERIENCE WITH SMA. CURRENTLY, THERE ARE TWO APPROVED DRUGS FOR SMA, WITH ANOTHER 20 DRUG PROGRAMS IN DEVELOPMENT, INCLUDING SIX IN CLINICAL TRIALS. CURE SMA HAS FUNDED HALF OF ALL THE ONGOING DRUG PROGRAMS IN SMA.CURE SMA HAS EXPANDED FOCUS TO SUPPORT CLINICAL CARE. THE SMA CARE CENTER NETWORK KICKED OFF IN 2018 AND 14 CENTERS RECEIVED GRANT FUNDING. THESE CENTERS PROVIDE PATIENT CONSENTED ELECTRONIC MEDICAL RECORD DATA TO THE CURE SMA CLINICAL DATA REGISTRY. THE GOAL OF THE SMA CARE CENTER NETWORK AND CLINICAL DATA REGISTRY IS TO IMPROVE CLINICAL CARE FOR INDIVIDUALS WITH SMA BY ESTABLISHING AN EVIDENCE-BASED STANDARD OF CARE THAT WILL BE AVAILABLE AND DISTRIBUTED NATIONALLY. CURE SMA ALSO PROVIDES PATIENT AND HEALTHCARE PROVIDER EDUCATION, WITH EXPERTISE FROM ITS MEDICAL ADVISORY COUNCIL. RESOURCES WERE ALSO DEVOTED TO MAINTAIN WEBSITE LISTINGS OF CARE CENTERS THAT PROVIDE FDA-APPROVED THERAPIES FOR PATIENTS. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $3,226,661 | ExpenseAmt |
| Grant | $361,968 | GrantAmt |
| Revenue | $2,007,413 | RevenueAmt |
| Desc | WE HOSTED OUR 30TH ANNUAL SMA CONFERENCE IN DALLAS, TX, WITH OVER 2400 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 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $11,696,028 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Temp Or Permanent Endowments | Yes (1) | TempOrPermanentEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | Yes (1) | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With Officer Ent | 0 | BusinessRlnWithOfficerEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 34 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Employee | 50 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 22 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 22 | IndependentVotingMemberCnt |
| Family Or Business Rln | Yes (1) | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | Yes (1) | LocalChaptersInd |
| Policies Reference Chapters | Yes (1) | PoliciesReferenceChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AZ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | DE | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | LA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TX | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | MARLINE PAGAN | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 8477096318 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 925 BUSSE RD | AddressLine1Txt |
| City | ELK GROVE VILLAGE | CityNm |
| State Abbreviation | IL | StateAbbreviationCd |
| ZIP | 60007 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (30 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Key EmployeeKeyEmployeeInd | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|---|
| RICHARD M RUBENSTEIN | ||||||||
| BOARD CHAIR | 15.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| NICK FARRELL | ||||||||
| VICE CHAIR | 4.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| GILLIAN MULLINS | ||||||||
| SECRETARY | 2.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| PETER STATILE | ||||||||
| TREASURER | 2.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| KELLY COLE | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| BRAD NUNEMAKER | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| COREY BRAASTAD | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| MATT EVANS | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| JACLYN GREENWOOD | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| ANNIE KENNEDY | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| EDMUND LEE | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| ROB LOCKWOOD | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| DOUGLAS KERR | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| THOMAS MURRAY | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| SPENCER PERLMAN | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| SHANNON SHRYNE | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| BRIAN SNYDER | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| KELLY JANKOWSKI | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| ROBERT GRAHAM | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| ALLYSON HENKEL | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| AMY MEDINA | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| SHANNON ZERZAN | ||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| DANYELLE SUN | ||||||||
| DIRECTOR (THROUGH MAY 2019) | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| KENNETH HOBBY | ||||||||
| PRESIDENT | 70.00 | Yes (X) | $231,320 | $0 | $23,892 | |||
| JILL JARECKI | ||||||||
| CHIEF SCIENTIFIC OFFICER | 60.00 | $194,644 | $0 | $9,149 | Yes (X) | |||
| MARY SCHROTH | ||||||||
| CHIEF MEDICAL OFFICER | 45.00 | $209,709 | $0 | $13,942 | Yes (X) | |||
| MARLINE PAGAN | ||||||||
| VICE PRESIDENT, FINANCE & OPPERATIONS | 60.00 | $138,866 | $0 | $21,575 | Yes (X) | |||
| COLLEEN MCCARTHY O'TOOLE | ||||||||
| VICE PRESIDENT, EVENTS & FAMILY SUPPORT | 60.00 | $122,528 | $0 | $22,012 | Yes (X) | |||
| ROSANGEL CRUZ | ||||||||
| DIRECTOR OF CLINICAL AFFAIRS | 45.00 | $117,918 | $0 | $10,840 | Yes (X) | |||
| ERIN KELLY | ||||||||
| VP, DEVELOPMENT | 45.00 | $128,054 | $0 | $6,235 | Yes (X) | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $1,143,039 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $107,645 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 7 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp
Contractor Name ContractorName
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | DRINKER BIDDLE AND REATH LLP | BusinessNameLine1Txt |
Contractor Address ContractorAddress
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1500 K STREET NW SUITE 1100 | AddressLine1Txt |
| City | WASHINGTON | CityNm |
| State Abbreviation | DC | StateAbbreviationCd |
| ZIP | 200051209 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Services | LEGAL | ServicesDesc |
| Compensation | $169,805 | CompensationAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 1 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $852,437 | FundraisingAmt |
| All Other Contributions | $8,454,775 | AllOtherContributionsAmt |
| Noncash Contributions | $126,975 | NoncashContributionsAmt |
| Total Contributions | $9,307,212 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | ANNUAL CONFERENCE | Desc |
| Business | 900099 | BusinessCd |
| Total Revenue Column | $2,007,413 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $2,007,413 | RelatedOrExemptFuncIncomeAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $2,007,413 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $45,169 | TotalRevenueColumnAmt |
| Exclusion | $45,169 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $559,365 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $473,525 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $85,840 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $85,840 | TotalRevenueColumnAmt |
| Exclusion | $85,840 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $3,435,244 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $852,437 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $607,074 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $2,828,170 | TotalRevenueColumnAmt |
| Exclusion | $2,828,170 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp (3 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt | ExclusionExclusionAmt |
|---|---|---|---|---|
| STORE MERCHANDISE | 900099 | $32,658 | $32,658 | |
| SPEAKER HONORARIUMS | 900099 | $13,503 | $13,503 | |
| GAIN/LOSS ON FOREIGN CURRENCY | 900099 | -$978 | -$978 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $45,183 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $14,318,987 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $2,053,574 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $2,958,201 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,800,792 | TotalAmt |
| Program Services | $2,800,792 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $370,968 | TotalAmt |
| Program Services | $370,968 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $668,895 | TotalAmt |
| Program Services | $668,895 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $760,175 | TotalAmt |
| Program Services | $534,075 | ProgramServicesAmt |
| Management And General | $43,204 | ManagementAndGeneralAmt |
| Fundraising | $182,896 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,995,311 | TotalAmt |
| Program Services | $1,927,606 | ProgramServicesAmt |
| Management And General | $406,624 | ManagementAndGeneralAmt |
| Fundraising | $661,081 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $82,414 | TotalAmt |
| Program Services | $53,349 | ProgramServicesAmt |
| Management And General | $22,232 | ManagementAndGeneralAmt |
| Fundraising | $6,833 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $245,114 | TotalAmt |
| Program Services | $160,159 | ProgramServicesAmt |
| Management And General | $19,537 | ManagementAndGeneralAmt |
| Fundraising | $65,418 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $261,169 | TotalAmt |
| Program Services | $171,117 | ProgramServicesAmt |
| Management And General | $31,446 | ManagementAndGeneralAmt |
| Fundraising | $58,606 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $146,798 | TotalAmt |
| Program Services | $141,873 | ProgramServicesAmt |
| Management And General | $1,149 | ManagementAndGeneralAmt |
| Fundraising | $3,776 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $31,150 | TotalAmt |
| Management And General | $31,150 | ManagementAndGeneralAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $8,406 | TotalAmt |
| Management And General | $8,406 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $556,795 | TotalAmt |
| Program Services | $483,165 | ProgramServicesAmt |
| Management And General | $51,658 | ManagementAndGeneralAmt |
| Fundraising | $21,972 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $342,945 | TotalAmt |
| Program Services | $227,659 | ProgramServicesAmt |
| Management And General | $40,484 | ManagementAndGeneralAmt |
| Fundraising | $74,802 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $519,234 | TotalAmt |
| Program Services | $447,947 | ProgramServicesAmt |
| Management And General | $19,161 | ManagementAndGeneralAmt |
| Fundraising | $52,126 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $320,030 | TotalAmt |
| Program Services | $224,021 | ProgramServicesAmt |
| Management And General | $22,402 | ManagementAndGeneralAmt |
| Fundraising | $73,607 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $217,323 | TotalAmt |
| Program Services | $151,540 | ProgramServicesAmt |
| Management And General | $26,013 | ManagementAndGeneralAmt |
| Fundraising | $39,770 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $292,987 | TotalAmt |
| Program Services | $191,966 | ProgramServicesAmt |
| Management And General | $35,275 | ManagementAndGeneralAmt |
| Fundraising | $65,746 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,807,013 | TotalAmt |
| Program Services | $2,700,987 | ProgramServicesAmt |
| Management And General | $106,026 | ManagementAndGeneralAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $326,702 | TotalAmt |
| Program Services | $316,253 | ProgramServicesAmt |
| Management And General | $2,091 | ManagementAndGeneralAmt |
| Fundraising | $8,358 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $29,038 | TotalAmt |
| Program Services | $15,785 | ProgramServicesAmt |
| Management And General | $7,847 | ManagementAndGeneralAmt |
| Fundraising | $5,406 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt | Program ServicesProgramServicesAmt |
|---|---|---|---|---|
| BANK CHARGES, CREDIT CA | $120,534 | $72,748 | $47,786 | |
| WEBSITE | $100,133 | $5,007 | $20,026 | $75,100 |
| STAFF DEVELOPMENT/TRAIN | $42,743 | $2,992 | $9,831 | $29,920 |
| DUES AND SUBSCRIPTIONS/ | $23,878 | $23,878 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $51,275 | TotalAmt |
| Program Services | $2,851 | ProgramServicesAmt |
| Management And General | $48,042 | ManagementAndGeneralAmt |
| Fundraising | $382 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $14,121,822 | TotalAmt |
| Program Services | $11,696,028 | ProgramServicesAmt |
| Management And General | $1,003,494 | ManagementAndGeneralAmt |
| Fundraising | $1,422,300 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,921,996 | BOYAmt |
| EOY | $2,976,858 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $875,164 | BOYAmt |
| EOY | $1,405,756 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,270,382 | BOYAmt |
| EOY | $3,725,831 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $274,082 | BOYAmt |
| EOY | $108,319 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $94,520 | BOYAmt |
| EOY | $90,394 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $580,311 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $243,134 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $174,155 | BOYAmt |
| EOY | $337,177 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,110,862 | BOYAmt |
| EOY | $1,201,609 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $406,775 | BOYAmt |
| EOY | $507,000 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $23,342 | BOYAmt |
| EOY | $23,342 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,151,278 | BOYAmt |
| EOY | $10,376,286 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,678,766 | BOYAmt |
| EOY | $2,196,037 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,492,497 | BOYAmt |
| EOY | $3,055,935 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $24,093 | BOYAmt |
| EOY | $19,508 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,195,356 | BOYAmt |
| EOY | $5,271,480 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,357,096 | BOYAmt |
| EOY | $497,975 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,522,697 | BOYAmt |
| EOY | $3,440,835 | EOYAmt |
Permanently Rstr Net Assets PermanentlyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,076,129 | BOYAmt |
| EOY | $1,165,996 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,955,922 | BOYAmt |
| EOY | $5,104,806 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,151,278 | BOYAmt |
| EOY | $10,376,286 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $197,165 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | -$48,281 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $4,716,073 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $5,374,986 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $5,818,435 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $10,804,912 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $9,307,212 | CurrentTaxYearAmt |
| Total | $36,021,618 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $4,716,073 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $5,374,986 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $5,818,435 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $10,804,912 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $9,307,212 | CurrentTaxYearAmt |
| Total | $36,021,618 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $13,089,449 | SubstantialContributorsTotAmt |
| Public Support Total170 | $22,932,169 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $21,373 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $19,250 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $86,367 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $138,587 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $45,169 | CurrentTaxYearAmt |
| Total | $310,746 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus2 Years | $585,000 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $15,895 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $45,183 | CurrentTaxYearAmt |
| Total | $646,078 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $36,978,442 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $10,367,632 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.62010 | PublicSupportCY170Pct |
| Public Support PY170 | 0.78830 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| 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) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
| Field | Value | IRS element (for citing) |
|---|---|---|
| Volunteers | 0 | VolunteersInd |
| Paid Staff Or Management | Yes (1) | PaidStaffOrManagementInd |
| Media Advertisements | 0 | MediaAdvertisementsInd |
| Mailings Members | 0 | MailingsMembersInd |
| Publications Or Broadcast | 0 | PublicationsOrBroadcastInd |
| Grants Other Organizations | 0 | GrantsOtherOrganizationsInd |
| Direct Contact Legislators | 0 | DirectContactLegislatorsInd |
| Rallies Demonstrations | 0 | RalliesDemonstrationsInd |
| Other Activities | Yes (1) | OtherActivitiesInd |
| Other Activities | $202,448 | OtherActivitiesAmt |
| Total Lobbying Expenditures | $202,448 | TotalLobbyingExpendituresAmt |
| Not Described Section501c3 | 0 | NotDescribedSection501c3Ind |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART II-B, LINE 1 | FormAndLineReferenceDesc |
| Explanation | ORGANIZATION MAINTAINS TWO STAFF MEMBER SPECIALIZING IN LOBBYING AND GOVERNMENT RELATIONS AND THESE STAFF MEMBERS' COMPENSATION INCLUDING TAXES AND BENEFITS TOTALED $166,444 FOR THE FISCAL YEAR ENDED JUNE 30, 2019. OUR TEAM WORKS WITH PUBLIC POLICY EXPERTS AND ADVOCATES IN WASHINGTON AND IN THE STATE CAPITALS TO KEEP ABREAST OF DEVELOPMENTS IMPACTING THE SMA COMMUNITY. | ExplanationTxt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,110,862 | BeginningYearBalanceAmt |
| Contributions | $63,994 | ContributionsAmt |
| Investment Earnings Or Losses | $53,541 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $26,788 | OtherExpendituresAmt |
| End Year Balance | $1,201,609 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,032,313 | BeginningYearBalanceAmt |
| Contributions | $48,571 | ContributionsAmt |
| Investment Earnings Or Losses | $58,042 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $28,064 | OtherExpendituresAmt |
| End Year Balance | $1,110,862 | EndYearBalanceAmt |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $854,008 | BeginningYearBalanceAmt |
| Contributions | $116,736 | ContributionsAmt |
| Investment Earnings Or Losses | $87,854 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $26,285 | OtherExpendituresAmt |
| End Year Balance | $1,032,313 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $741,466 | BeginningYearBalanceAmt |
| Contributions | $112,008 | ContributionsAmt |
| Investment Earnings Or Losses | $534 | InvestmentEarningsOrLossesAmt |
| End Year Balance | $854,008 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $620,515 | BeginningYearBalanceAmt |
| Contributions | $109,608 | ContributionsAmt |
| Investment Earnings Or Losses | $11,343 | InvestmentEarningsOrLossesAmt |
| End Year Balance | $741,466 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Designated Balance EOY | 0.02970 | BoardDesignatedBalanceEOYPct |
| Prmnnt Endowment Balance EOY | 0.97030 | PrmnntEndowmentBalanceEOYPct |
| Endowments Held Unrelated Org | 0 | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | 0 | EndowmentsHeldRelatedOrgInd |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $580,311 | OtherCostOrOtherBasisAmt |
| Depreciation | $243,134 | DepreciationAmt |
| Book Value | $337,177 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $337,177 | TotalBookValueLandBuildingsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | DEFERRED RENT | Desc |
| Amt | $19,508 | Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $19,508 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $14,278,000 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | -$48,281 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $15,700 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | -$32,581 | RevenueNotReportedAmt |
| Revenue Subtotal | $14,310,581 | RevenueSubtotalAmt |
| Investment Expenses Not Incld | $8,406 | InvestmentExpensesNotIncldAmt |
| Revenue Not Reported Fincl Stmt | $8,406 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $14,318,987 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $14,129,116 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $15,700 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $15,700 | ExpensesNotReportedAmt |
| Expenses Subtotal | $14,113,416 | ExpensesSubtotalAmt |
| Investment Expenses Not Incld2 | $8,406 | InvestmentExpensesNotIncld2Amt |
| Expenses Not Rpt Fincl Stmt | $8,406 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $14,121,822 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART V, LINE 4: | THE ENDOWMENT FUND IS INTENDED FOR THE PURPOSE OF PROVING SCHOLARSHIPS WHICH WILL ENABLE CURE SMA TO WAIVE REGISTRATIONS FEES FOR ANY FAMILIES OF PATIENTS NEWLY DIAGNOSED WITH SMA TO ATTEND THE ANNUAL SMA CONFERENCE. |
| PART X, LINE 2: | THE ORGANIZATION FOLLOWS THE GUIDANCE IN THE FASB CODIFICATION TOPIC RELATED TO UNCERTAINTY IN INCOME TAXES WHICH PRESCRIBES A COMPREHENSIVE MODEL FOR RECOGNIZING, MEASURING, PRESENTING AND DISCLOSING IN THE FINANCIAL STATEMENTS UNCERTAIN TAX POSITIONS THAT THE ORGANIZATION HAS TAKEN OR EXPECTS TO TAKE IN ITS TAX RETURNS. UNDER THE GUIDANCE, THE ORGANIZATION MAY RECOGNIZE THE TAX BENEFIT FROM AN UNCERTAIN TAX POSITION ONLY IF IT IS "MORE LIKELY THAN NOT" THAT IT IS SUSTAINABLE, BASED ON ITS TECHNICAL MERITS. THE TAX BENEFITS RECOGNIZED IN THE FINANCIAL STATEMENTS FROM SUCH A POSITION SHOULD BE MEASURED BASED ON THE LARGEST BENEFIT THAT HAS A GREATER THAN 50% LIKELIHOOD OF BEING REALIZED UPON ULTIMATE SETTLEMENT WITH A TAXING AUTHORITY HAVING FULL KNOWLEDGE OF ALL RELEVANT INFORMATION. THE ORGANIZATION BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR THE POSITIONS TAKEN ON ITS RETURNS. |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|---|
| NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES | 0 | 0 | GRANTS TO RECIPIENTS IN THE REGION | GRANTS | $150,000 |
| SOUTH AMERICA | 0 | 0 | GRANTS TO RECIPIENTS IN THE REGION | GRANTS | $200,000 |
| EUROPE (INCLUDING ICELAND & GREENLAND) | 0 | 0 | GRANTS TO RECIPIENTS IN THE REGION | GRANTS | $318,895 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $668,895 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $668,895 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (4 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|---|
| NORTH AMERICA | RESEARCH | $150,000 | WIRE TRANSFER |
| SOUTH AMERICA | RESEARCH | $200,000 | WIRE TRANSFER |
| EUROPE (INCLUDING ICELAND & GREENLAND) | RESEARCH | $150,000 | WIRE TRANSFER |
| EUROPE (INCLUDING ICELAND & GREENLAND) | RESEARCH - CLINICAL TRIALS | $168,895 | WIRE TRANSFER |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2 | FormAndLineReferenceDesc |
| Explanation | CURE 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
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | CONGRESSIONAL DINNER | Event1Nm |
| Gross Receipts Event1 | $190,750 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $161,000 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $29,750 | GrossRevenueEvent1Amt |
| Food And Beverage Event1 | $29,483 | FoodAndBeverageEvent1Amt |
| Other Direct Expenses Event1 | $22,138 | OtherDirectExpensesEvent1Amt |
| Event2 | CONCERT FOR A CURE | Event2Nm |
| Gross Receipts Event2 | $199,608 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $176,410 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $23,198 | GrossRevenueEvent2Amt |
| Food And Beverage Event2 | $23,198 | FoodAndBeverageEvent2Amt |
| Entertainment Event2 | $10,877 | EntertainmentEvent2Amt |
| Other Direct Expenses Event2 | $17,900 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 205 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $3,897,323 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $515,027 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $3,382,296 | GrossRevenueOtherEventsAmt |
| Food And Beverage Other Events | $118,880 | FoodAndBeverageOtherEventsAmt |
| Entertainment Other Events | $24,421 | EntertainmentOtherEventsAmt |
| Oth Direct Expnss Other Events | $360,177 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $4,287,681 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $852,437 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $3,435,244 | GrossRevenueTotalEventsAmt |
| Food And Beverage Total Events | $171,561 | FoodAndBeverageTotalEventsAmt |
| Entertainment Total Events | $35,298 | EntertainmentTotalEventsAmt |
| Oth Direct Expnss Total Events | $400,215 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $607,074 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $2,828,170 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (29 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|
| TEXAS TECH UNIVERITY HEALTH SCIENCE CENTER | ||||||||
| 5001 EL PASO DRIVE MSC 51005 | EL PASO | TX | 79905 | 752668018 | 501(C)(3) | $150,000 | RESEARCH - BASIC | |
| SALK INSTITUTE FOR BIOLOGICAL STUDIES | ||||||||
| 10010 NORTH TORREY PINES RD | LAS JOLLA | CA | 92037 | 952160097 | 501(C)(3) | $150,000 | RESEARCH - BASIC | |
| JOHN HOPKINS UNIVERSITY | ||||||||
| BANK OF AMERICA NA 12529 COLLECTION | CHICAGO | IL | 60693 | 520595110 | 501(C)(3) | $200,000 | RESEARCH - BASIC | CENTER DRIVE |
| UNIVERSITY OF COLORADO | ||||||||
| PO BOX 910238 | DENVER | CO | 80291 | 846000555 | 501(C)(3) | $150,000 | RESEARCH - BASIC | |
| BRIGHAM AND WOMAN'S HOSPITAL | ||||||||
| BANK OF AMERICA NA PO BOX 3149 | BOSTON | MA | 02241 | 042312909 | 501(C)(3) | $75,000 | RESEARCH - DRUG DISCOVERY | |
| TRUSTEES OF COLUMBIA UNIVERSITY - NYC | ||||||||
| PO BOX 29789 GENERAL POST OFFICE | NEW YORK | NY | 10087 | 135598093 | 501(C)(3) | $175,000 | RESEARCH - DRUG DISCOVERY | |
| RTI INTERNATIONAL | ||||||||
| 3040 E CORNWALLIS ROAD | RESEARCH TRIANGLE PARK | NC | 27709 | 560686338 | 501(C)(3) | $150,000 | RESEARCH - NEWBORN SCREENING | |
| VIRGINIA DGS | ||||||||
| 650 NORTH 5TH STREET | RICHMOND | VA | 23219 | 541056975 | 501(C)(3) | $150,000 | RESEARCH - NEWBORN SCREENING | |
| UNIVERSITY OF IOWA | ||||||||
| 2 GILMORE HALL | IOWA CITY | IA | 52242 | 426004813 | 501(C)(3) | $150,000 | RESEARCH - NEWBORN SCREENING | |
| MI DEPT OF HEALTHHUMAN | ||||||||
| PO BOX 30437 | LANSING | MI | 48906 | 386000134 | 501(C)(3) | $75,000 | RESEARCH - NEWBORN SCREENING | |
| GILLETTE CHILDREN'S SPECIALTY HEALTHCARE | ||||||||
| 200 UNIVERSITY DRIVE AVENUE E | ST PAUL | MN | 55101 | 363379150 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| UNIVESITY OF UTAH | ||||||||
| 201 PRESIDENT CIRCLE ROOM 406 | SALT LAKE CITY | UT | 84112 | 876000525 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| AR CHILDREN'S RESEARCH INSTITUTE | ||||||||
| 13 CHILDRENS WAY SLOT 842 | LITTLE ROCK | AR | 72202 | 710694931 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| YALE UNIVERSITY | ||||||||
| PO BOX 1873 | NEW HAVEN | CT | 06508 | 060646973 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| UNIVERSITY OF ROCHESTER | ||||||||
| 601 ELMWOOD AVENUE BOX 673 | ROCHESTER | NY | 14624 | 160743209 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| CHILDREN'S NATIONAL MEDICAL CENTER | ||||||||
| 111 MICHIGAN AVE NW SUITE 5400 | WASHINGTON | DC | 20010 | 521654453 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| SEATTLE CHILDREN'S HOSPITAL | ||||||||
| 4800 SAND POINT WAY NE | SEATTLE | WA | 98105 | 910564748 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| ADVOCATE HEALTH & HOSPITAL CORP | ||||||||
| 3075 HIGHLAND PARKWAY SUITE 600 | DOWNERS GROVE | IL | 60515 | 362169147 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| CURATORS OF THE UNIVESITY OF MISSOURI | ||||||||
| 118 UNIVERSITY HALL | COLUMBIA | MO | 65211 | 436003859 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| UNIVERSITY OF ALABAMA OF BIRMINGHAM | ||||||||
| 1720 2ND AVENUE SOUTH - AB1170 | BIRMINGHAM | AL | 35294 | 636005396 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| NEMOURS FOUNDATION | ||||||||
| 10140 CENTURION PARKWAY | NORTH JACKSONVILLE | FL | 33256 | 590634433 | 501(C)(3) | $57,608 | CARE CENTER NETWORK | |
| PHOENIX CHILDREN'S HOSPITAL | ||||||||
| 1919 E THOMAS ROAD | PHOENIX | AZ | 85016 | 860422559 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| DUKE UNIVERSITY | ||||||||
| 2200 WEST MAIN ST SUITE 300 | DURHAM | NC | 27705 | 560532129 | 501(C)(3) | $60,000 | CARE CENTER NETWORK | |
| UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CTR | ||||||||
| 1935 MEDICAL DISTRICT DR | DALLAS | TX | 75207 | 752556007 | 170(C)(3) | $60,000 | CARE CENTER NETWORK | |
| TRUSTEES OF COLUMBIA UNIVERSITY - NYC | ||||||||
| 154 HAVEN AVENUE | NEW YORK | NY | 10032 | 135598093 | 501(C)(3) | $250,000 | PNCR - CARE CENTER NETWORK | |
| UNIVERSITY OF ROCHESTER | ||||||||
| 518 HYLAN BUILDING | ROCHESTER | NY | 14627 | 160743209 | 501(C)(3) | $52,899 | PNCR - CARE CENTER NETWORK | |
| LELAND STANFORD JUNIOR UNIVERSITY | ||||||||
| 450 SERRA MALL | STANFORD | CA | 94305 | 941156365 | 501(C)(3) | $75,000 | PNCR - CARE CENTER NETWORK | |
| BOSTON CHILDREN'S HOSPITAL | ||||||||
| 300 LONGWOOD AVENUE | BOSTON | MA | 02115 | 042774441 | 501(C)(3) | $127,035 | PNCR - CARE CENTER NETWORK | |
| CHILDREN'S HOSPITAL OF PHILADELPHIA | ||||||||
| 34TH STREET CIVIC CENTER BLVD | PHILADELPHIA | PA | 19104 | 261352166 | 501(C)(3) | $33,250 | PNCR - CARE CENTER NETWORK | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 33 | Total501c3OrgCnt |
Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp (3 entries)
| Grant TypeGrantTypeTxt | RecipientRecipientCnt | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Valuation Method UsedValuationMethodUsedDesc | Non Cash AssistanceNonCashAssistanceDesc |
|---|---|---|---|---|---|
| PHYSICAL THERAPY STIPENDS | 4 | $9,000 | |||
| CHILD CARE PACKAGES | 221 | $68,262 | FMV | CARE PACKAGES FOR FAMILIES WITH RECENTLY DIAGNOSED CHILDREN | |
| ADULT CARE PACKAGES | 885 | $293,706 | FMV | CARE PACKAGES FOR ADULTS AND TEENS |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2 | FormAndLineReferenceDesc |
| Explanation | 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. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Compensation Survey | Yes (X) | CompensationSurveyInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (4 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| KENNETH HOBBY | ||||||||||||||
| PRESIDENT | $231,320 | $0 | $0 | $0 | $0 | $0 | $9,183 | $0 | $14,709 | $0 | $255,212 | $0 | $0 | $0 |
| JILL JARECKI | ||||||||||||||
| CHIEF SCIENTIFIC OFFICER | $189,719 | $0 | $4,925 | $0 | $0 | $0 | $7,787 | $0 | $1,362 | $0 | $203,793 | $0 | $0 | $0 |
| MARY SCHROTH | ||||||||||||||
| CHIEF MEDICAL OFFICER | $204,034 | $0 | $5,675 | $0 | $0 | $0 | $7,693 | $0 | $6,249 | $0 | $223,651 | $0 | $0 | $0 |
| MARLINE PAGAN | ||||||||||||||
| VICE PRESIDENT, FINANCE & OPPERATION | $135,191 | $0 | $3,675 | $0 | $0 | $0 | $5,836 | $0 | $15,739 | $0 | $160,441 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 3 | FormAndLineReferenceDesc |
| Explanation | 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. | ExplanationTxt |
Schedule M IRS990ScheduleM
Works Of Art WorksOfArtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 1 | ContributionCnt |
| Noncash Contributions Rpt F990 | $250 | NoncashContributionsRptF990Amt |
Books And Publications BooksAndPublicationsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Noncash Contributions Rpt F990 | $1,972 | NoncashContributionsRptF990Amt |
Clothing And Household Goods ClothingAndHouseholdGoodsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Noncash Contributions Rpt F990 | $14,351 | NoncashContributionsRptF990Amt |
Other Non Cash Contri Table OtherNonCashContriTableGrp (8 entries)
| Non Cash CheckboxNonCashCheckboxInd | DescDesc | ContributionContributionCnt | Noncash Contributions Rpt F990NoncashContributionsRptF990Amt | Method Of Determining RevenuesMethodOfDeterminingRevenuesTxt |
|---|---|---|---|---|
| Yes (X) | PRINTING/SIGNAGE | 2 | $63,167 | |
| Yes (X) | EVENT ADMISSION TICKETS | 104 | $14,671 | FAIR MARKET VALUE |
| Yes (X) | FOOD/WATER | 79 | $12,856 | FAIR MARKET VALUE |
| Yes (X) | EQUIPMENT | 2 | $8,900 | FAIR MARKET VALUE |
| Yes (X) | AUTOGRAPHED ITEMS | 7 | $4,027 | FAIR MARKET VALUE |
| Yes (X) | HOTEL/AIRFARE/SPA | 9 | $3,131 | FAIR MARKET VALUE |
| Yes (X) | SUPPLIES | 1 | $2,300 | FAIR MARKET VALUE |
| Yes (X) | OTHER EVENT ITEMS | 4 | $1,350 | FAIR MARKET VALUE |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | 0 | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 2 | THE BOARD CHAIR, RICHARD RUBENSTEIN, AND TREASURER, PETER STATILE, HAVE A FAMILY RELATIONSHIP. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE 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 12C | MEMBERS OF THE BOARD OF DIRECTORS ARE REQUIRED TO SIGN AN ANNUAL STATEMENT DISCLOSING ANY POSSIBLE CONFLICTS OF INTEREST. ON AN ANNUAL BASIS, THE EXECUTIVE COMMITTEE REVIEWS THE CONFLICT OF INTEREST FORMS DISCLOSURE FORMS FILED BY THE TRUSTEES, OFFICERS AND EMPLOYEES FOR POTENTIAL CONFLICTS. ADDITIONALLY, ALL COVERED PERSON HAVE AN ONGOING DUTY TO DISCLOSE POTENTIAL CONFLICTS TO MANAGEMENT. POTENTIAL CONFLICTS OF INTEREST ARE PRESENTED TO THE EXECUTIVE COMMITTEE FOR REVIEW. WHERE POTENTIAL CONFLICT EXIST, A CONFLICT RESOLUTION REPORT IS CREATED AND THE TRUSTEE, OFFICER OR EMPLOYEE IS NOT ALLOWED TO PARTICIPATE IN ANY VOTE OR DISCUSSION OF THE DISCLOSED MATTER. AT THE CURRENT TIME, NO POTENTIAL CONFLICTS OF INTEREST HAVE BEEN IDENTIFIED. |
| FORM 990, PART VI, SECTION B, LINE 15 | PRESIDENT AND OTHER OFFICER AND KEY EMPLOYEES'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 | 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 DOCUMENTS. |
| FORM 990, PART XII, LINE 2C: | THE ORGANIZATION HAS A FINANCE/AUDIT COMMITTEE THAT REVIEWS THE AUDIT AND 990. A REQUEST FOR PROPOSALS WAS ISSUED IN THE CURRENT YEAR AND NEW AUDITORS WERE SELECTED. |
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