THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC: Form 990, tax year 2019
View the entire original 990 at ProPublica ↗
- Organization
- THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC (EIN 31-1405490)
- Tax period
- 2019-01-01 to 2019-12-31
- Filed
- 2020-08-06
- IRS object ID
- 202032199349300328
- Schema version
- 2019v5.1
- 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 | 2020-08-06T12:13:34-05:00 | ReturnTs |
| Tax Period End | 2019-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 223604710 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | JAMES M WOOD CPA | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 603B OMNI DRIVE | AddressLine1Txt |
| City | HILLSBOROUGH | CityNm |
| State Abbreviation | NJ | StateAbbreviationCd |
| ZIP | 08844 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2019-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 311405490 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | THE PARENT PROJECT FOR MUSCULAR | BusinessNameLine1Txt |
| Business Name Line2 | DYSTROPHY RESEARCH INC | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | PARE | BusinessNameControlTxt |
| Phone | 2012508440 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 401 HACKENSACK AVENUE 9TH FLOOR | AddressLine1Txt |
| City | HACKENSACK | CityNm |
| State Abbreviation | NJ | StateAbbreviationCd |
| ZIP | 07601 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | PATRICIA A FURLONG | PersonNm |
| Person Title | FOUNDING PRESIDENT/CEO | PersonTitleTxt |
| Phone | 2012508440 | PhoneNum |
| Signature | 2020-08-06 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | JAMES M WOOD | PreparerPersonNm |
| PTIN | P00310420 | PTIN |
| Phone | 9084311700 | PhoneNum |
| Preparation | 2020-08-06 | PreparationDt |
| Self Employed | Yes (X) | SelfEmployedInd |
Filing Security Information FilingSecurityInformation
IP Address IPAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| I Pv4 Address | 173.161.221.185 | IPv4AddressTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IP | 2020-08-06 | IPDt |
| IP Tm | 08:29:39 | IPTm |
| IP Timezone | ED | IPTimezoneCd |
| Filing License Type | P | FilingLicenseTypeCd |
| At Submission Creation Device Id | 2D72A1720A40BAF8C6E91116F587AF915797A6E6 | AtSubmissionCreationDeviceId |
| At Submission Filing Device Id | 2D72A1720A40BAF8C6E91116F587AF915797A6E6 | AtSubmissionFilingDeviceId |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2019 | TaxYr |
| Build TS | 2021-01-29 14:40:06Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | PATRICIA A FURLONG | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 401 HACKENSACK AVENUE 9TH FLOOR | AddressLine1Txt |
| City | HACKENSACK | CityNm |
| State Abbreviation | NJ | StateAbbreviationCd |
| ZIP | 07601 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $12,535,654 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.PARENTPROJECTMD.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1997 | FormationYr |
| Legal Domicile State | OH | LegalDomicileStateCd |
| Activity Or Mission | END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE. | ActivityOrMissionDesc |
| Voting Members Governing Body | 15 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 15 | VotingMembersIndependentCnt |
| Total Employee | 26 | TotalEmployeeCnt |
| Total Volunteers | 1103 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $9,010,932 | PYContributionsGrantsAmt |
| CY Contributions Grants | $11,218,006 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $443,499 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $536,156 | CYProgramServiceRevenueAmt |
| PY Investment Income | $353 | PYInvestmentIncomeAmt |
| CY Investment Income | $2,232 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$383,625 | PYOtherRevenueAmt |
| CY Other Revenue | -$320,727 | CYOtherRevenueAmt |
| PY Total Revenue | $9,071,159 | PYTotalRevenueAmt |
| CY Total Revenue | $11,435,667 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $2,393,393 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $4,455,275 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $2,712,295 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $3,127,518 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $780,442 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $3,582,547 | PYOtherExpensesAmt |
| CY Other Expenses | $3,270,195 | CYOtherExpensesAmt |
| PY Total Expenses | $8,688,235 | PYTotalExpensesAmt |
| CY Total Expenses | $10,852,988 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $382,924 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $582,679 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $5,732,769 | TotalAssetsBOYAmt |
| Total Assets EOY | $4,713,542 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $1,963,776 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $361,870 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $3,768,993 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $4,351,672 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | THE PARENT PROJECT MUSCULAR DYSTROPHY (PPMD) FIGHTS TO END DUCHENNE. WE ACCELERATE RESEARCH, RAISE OUR VOICES TO IMPACT POLICY, DEMAND OPTIMAL CARE FOR EVERY SINGLE FAMILY, AND STRIVE TO ENSURE ACCESS TO APPROVED THERAPIES. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $7,647,985 | ExpenseAmt |
| Grant | $4,455,275 | GrantAmt |
| Revenue | $227,711 | RevenueAmt |
| Desc | RESEARCHPPMD'S RESEARCH INITIATIVE IDENTIFIES AND AGGRESSIVELY FUNDS THE MOST PROMISING NEAR AND LONG-TERM DUCHENNE RESEARCH AND CUTTING-EDGE THERAPIES; STIMULATES NEW RESEARCH TO ENSURE THAT THE THERAPEUTIC PIPELINE IS RICH WITH OPPORTUNITY; FACILITATES PRE-COMPETITIVE INDUSTRY INTERACTIONS THROUGH THE DUCHENNE DRUG DEVELOPMENT ROUNDTABLE TO ENHANCE AND HARMONIZE THE CLINICAL TRIAL LANDSCAPE; AND SUPPORTS MULTI-STAKEHOLDER DATA MODELLING CONSORTIA TO ACCELERATE DRUG DEVELOPMENT TIMELINES.THE DUCHENNE REGISTRYTHE DUCHENNE REGISTRY IS A PATIENT-REPORTED REGISTRY FOR INDIVIDUALS WITH DUCHENNE AND BECKER MUSCULAR DYSTROPHY AND CARRIER FEMALES. ESTABLISHED BY PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH IN 2007, THE REGISTRY WAS CREATED TO BRIDGE THE INFORMATION GAP BETWEEN CLINICIANS, RESEARCHERS AND THE PATIENT COMMUNITY, THEREBY ADDRESSING MEDICAL CARE NEEDS AND ACCELERATING THE PACE OF THERAPEUTIC ADVANCEMENTS. OVER 5,000 FAMILIES ACROSS THE GLOBE HAVE EMBRACED THEIR ROLE AS CITIZEN SCIENTISTS AND HAVE CONTRIBUTED TO THE LARGEST PATIENT-REPORTED DATA SET FOR DUCHENNE.CAREPPMD'S CARE INITIATIVE IDENTIFIES GAPS IN CARE FOR PEOPLE WITH DUCHENNE THROUGHOUT THE LIFESPAN AND COLLABORATES WITH HEALTH CARE PROFESSIONALS ACROSS THE GLOBE TO IMPROVE HEALTH OUTCOMES FOR ALL DUCHENNE PATIENTS THROUGH ACCESS TO STANDARDIZED CARE VIA THE CERTIFIED DUCHENNE CARE CENTER PROGRAM. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $1,407,262 | ExpenseAmt |
| Revenue | $308,445 | RevenueAmt |
| Desc | EDUCATIONPPMD'S EDUCATION INITIATIVE INCREASES AWARENESS AND UNDERSTANDING OF THE DISEASE PROGRESSION AND THE COMPONENTS OF MULTIDISCIPLINARY COMPREHENSIVE CARE NECESSARY TO OPTIMIZE QUALITY AND QUANTITY OF LIFE THROUGHOUT THE LIFESPAN. PPMD PARTNERS WITH EXPERTS IN DUCHENNE TO DEVELOP UP-TO-DATE INFORMATIONAL RESOURCES REGARDING TREATMENT AND CARE THAT WE THEN SHARE BROADLY. PPMD COLLABORATES WITH INTERNATIONAL ORGANIZATIONS TO DEVELOP AND DISSEMINATE EDUCATIONAL RESOURCES APPROPRIATE FOR THE GLOBAL DUCHENNE COMMUNITY. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $420,166 | ExpenseAmt |
| Desc | ADVOCACYPPMD'S ADVOCACY EFFORTS ARE DESIGNED TO ENSURE THE PATIENT'S VOICE IS HEARD IN WASHINGTON, DC, TO ENSURE THE LEGISLATIVE AGENDA AND ASSOCIATED POLICIES LEAD TO IMPROVEMENTS IN THE LIVES OF FAMILIES AFFECTED BY DUCHENNE AND REFLECT THE NEEDS OF THE WHOLE COMMUNITY. PPMD WORKS TO ENSURE THAT DUCHENNE RESEARCH, CARE, AND REGULATORY FLEXIBILITY REMAIN A HIGH PRIORITY FOR THE AGENCIES THAT HAVE THE POTENTIAL TO IMPACT DUCHENNE. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $9,475,413 | 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 |
| Donor Rstr Or Quasi Endowments | 0 | DonorRstrOrQuasiEndowmentsInd |
| 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 | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | 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 | Yes (1) | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | 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 With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| 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 | 47 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 26 | 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 | 0 | 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 | 15 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 15 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | 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 | 0 | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| 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 | 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 | AR | 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 | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | 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 | ME | 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 | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NE | 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 | PA | 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 | 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 |
| States Where Copy Of Return Is Fld | WY | 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 | THE ORGANIZATION | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 2012508440 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 401 HACKENSACK AVENUE 9TH FLOOR | AddressLine1Txt |
| City | HACKENSACK | CityNm |
| State Abbreviation | NJ | StateAbbreviationCd |
| ZIP | 07601 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (28 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 | Former Ofcr Director TrusteeFormerOfcrDirectorTrusteeInd |
|---|---|---|---|---|---|---|---|---|---|
| ANESSA FEHSENFELD | |||||||||
| BOARD CHAIRMAN | 8.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |||
| JOHN KILLIAN | |||||||||
| BOARD TREASURER | 8.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |||
| CHRISTINE L PIACENTINO | |||||||||
| BOARD SECRETARY | 6.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |||
| RASHA ALNAIBARI | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| JEFFREY BIGELOW MD | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| LINDA CRIPE MD | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| CHRISTOPHER B CURRAN | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| JONATHAN FINDER MD | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| LANCE HESTER | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| DAVID N HOFSTEIN | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| JOANNA BECKER JOHNSON | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| CHRISTOPHER JONES | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| RICHARD KLEIN | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| COLIN RENSCH | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| ELIZABETH WHITE | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| DONNA SACCAMANNO | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| HOWARD KAPLAN | |||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| PATRICIA A FURLONG | |||||||||
| FOUNDING CEO & PRESIDENT | 40.00 | Yes (X) | $236,487 | $0 | $10,701 | ||||
| KIMBERLY GALBERAITH | |||||||||
| CHIEF OPERATING OFFICER | 40.00 | Yes (X) | $175,694 | $0 | $36,309 | ||||
| ABBY H BRONSON | |||||||||
| SENIOR VICE PRESIDENT, RESEARCH STRATEGY | 40.00 | $200,496 | $0 | $23,170 | Yes (X) | ||||
| KELLY J DOUGHERTY | |||||||||
| SENIOR VICE PRESIDENT, FINANCE & ADMINISTRATION | 40.00 | $167,100 | $0 | $9,916 | Yes (X) | ||||
| ERIN DRESNICK | |||||||||
| DIRECTOR, DEVELOPMENT | 40.00 | $104,863 | $0 | $27,448 | Yes (X) | ||||
| RYAN K FISCHER | |||||||||
| SENIOR VICE PRESIDENT, COMMUNITY ENGAGEMENT | 40.00 | $148,833 | $0 | $12,516 | Yes (X) | ||||
| KATHLEEN KINNETT | |||||||||
| SENIOR VICE PRESIDENT, CLINICAL CARE | 20.00 | $121,471 | $0 | $6,328 | Yes (X) | ||||
| ANN MARTIN | |||||||||
| DIRECTOR, THE DUCHENNE REGISTRY | 40.00 | $114,064 | $0 | $6,302 | Yes (X) | ||||
| KAYLAN MOITOSO | |||||||||
| SENIOR VICE PRESIDENT, DEVELOPMENT | 40.00 | $158,908 | $0 | $8,633 | Yes (X) | ||||
| WILLIAM P NOLAN | |||||||||
| SENIOR VICE PRESIDENT, COMMUNICATIONS | 40.00 | $151,560 | $0 | $8,048 | Yes (X) | ||||
| ANNE KENNEDY | |||||||||
| SENIOR VICE PRESIDENT, LEGISLATION & PUBLIC POLICY | 20.00 | $140,566 | $0 | $19,452 | Yes (X) | ||||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $1,720,042 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $168,823 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 11 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | Yes (1) | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (3 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| PROMETHEUS RESEARCH LLC | |||||
| 1 AUDUBON STREET 4TH FLOOR | NEW HAVEN | CT | 65111 | DATABASE/INFORMATION TECHNOLOGY SERVICES | $290,650 |
| CONTINENTAL PLAZA ASSOCIATES | |||||
| PO BOX 392185 | PITTSBURGH | PA | 15251 | RENT | $118,788 |
| FAEGRE BAKER DANIELS LLP | |||||
| 1050 K STREET NW SUITE 400 | WASHINGTON | DC | 20001 | RESEARCH AND EDUCATION SERVICES | $106,502 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 3 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $885,303 | FundraisingAmt |
| All Other Contributions | $10,332,703 | AllOtherContributionsAmt |
| Total Contributions | $11,218,006 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| CONFERENCE INCOME | 900099 | $308,445 | $308,445 |
| FEES FOR SERVICE | 900099 | $227,711 | $227,711 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $536,156 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $883 | TotalRevenueColumnAmt |
| Exclusion | $883 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $780,609 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $779,260 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $1,349 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,349 | TotalRevenueColumnAmt |
| Exclusion | $1,349 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $0 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $885,303 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $320,727 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$320,727 | TotalRevenueColumnAmt |
| Exclusion | -$320,727 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $11,435,667 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $536,156 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$318,495 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,448,275 | TotalAmt |
| Program Services | $4,448,275 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,000 | TotalAmt |
| Program Services | $7,000 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $612,677 | TotalAmt |
| Program Services | $448,139 | ProgramServicesAmt |
| Management And General | $102,711 | ManagementAndGeneralAmt |
| Fundraising | $61,827 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,026,451 | TotalAmt |
| Program Services | $1,418,930 | ProgramServicesAmt |
| Management And General | $244,570 | ManagementAndGeneralAmt |
| Fundraising | $362,951 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $302,572 | TotalAmt |
| Program Services | $216,409 | ProgramServicesAmt |
| Management And General | $37,299 | ManagementAndGeneralAmt |
| Fundraising | $48,864 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $185,818 | TotalAmt |
| Program Services | $132,916 | ProgramServicesAmt |
| Management And General | $22,911 | ManagementAndGeneralAmt |
| Fundraising | $29,991 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $85,284 | TotalAmt |
| Program Services | $77,579 | ProgramServicesAmt |
| Management And General | $7,705 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $10,506 | TotalAmt |
| Management And General | $10,506 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $603,601 | TotalAmt |
| Program Services | $582,232 | ProgramServicesAmt |
| Management And General | $20,115 | ManagementAndGeneralAmt |
| Fundraising | $1,254 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $84,330 | TotalAmt |
| Program Services | $54,873 | ProgramServicesAmt |
| Management And General | $20,603 | ManagementAndGeneralAmt |
| Fundraising | $8,854 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $768,832 | TotalAmt |
| Program Services | $605,105 | ProgramServicesAmt |
| Management And General | $38,085 | ManagementAndGeneralAmt |
| Fundraising | $125,642 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $167,126 | TotalAmt |
| Program Services | $113,424 | ProgramServicesAmt |
| Management And General | $18,350 | ManagementAndGeneralAmt |
| Fundraising | $35,352 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $421,842 | TotalAmt |
| Program Services | $388,136 | ProgramServicesAmt |
| Management And General | $10,802 | ManagementAndGeneralAmt |
| Fundraising | $22,904 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $440,381 | TotalAmt |
| Program Services | $438,869 | ProgramServicesAmt |
| Management And General | $1,298 | ManagementAndGeneralAmt |
| Fundraising | $214 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $15,910 | TotalAmt |
| Program Services | $11,924 | ProgramServicesAmt |
| Management And General | $1,516 | ManagementAndGeneralAmt |
| Fundraising | $2,470 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $16,764 | TotalAmt |
| Program Services | $9,920 | ProgramServicesAmt |
| Management And General | $4,456 | ManagementAndGeneralAmt |
| Fundraising | $2,388 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| MEALS | $373,001 | $364,372 | $6,462 | $2,167 |
| PRINTING & PUBLICATIONS | $81,065 | $49,506 | $12,965 | $18,594 |
| FEES & PERMITS | $66,816 | $55,628 | $1,892 | $9,296 |
| BANK CHARGES | $52,496 | $0 | $21,545 | $30,951 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $82,241 | TotalAmt |
| Program Services | $52,176 | ProgramServicesAmt |
| Management And General | $13,342 | ManagementAndGeneralAmt |
| Fundraising | $16,723 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $10,852,988 | TotalAmt |
| Program Services | $9,475,413 | ProgramServicesAmt |
| Management And General | $597,133 | ManagementAndGeneralAmt |
| Fundraising | $780,442 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,365,764 | BOYAmt |
| EOY | $3,287,937 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,382,306 | BOYAmt |
| EOY | $546,925 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $788,259 | BOYAmt |
| EOY | $584,939 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $12,452 | BOYAmt |
| EOY | $25,728 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $124,003 | BOYAmt |
| EOY | $204,312 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $171,178 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $136,921 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $34,210 | BOYAmt |
| EOY | $34,257 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $25,775 | BOYAmt |
| EOY | $29,444 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,732,769 | BOYAmt |
| EOY | $4,713,542 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $150,381 | BOYAmt |
| EOY | $195,776 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $265,421 | BOYAmt |
| EOY | $141,094 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,547,974 | BOYAmt |
| EOY | $25,000 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,963,776 | BOYAmt |
| EOY | $361,870 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,768,993 | BOYAmt |
| EOY | $3,509,682 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $841,990 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,768,993 | BOYAmt |
| EOY | $4,351,672 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,732,769 | BOYAmt |
| EOY | $4,713,542 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $582,679 | ReconcilationRevenueExpnssAmt |
| 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 | $8,563,585 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,966,916 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,136,279 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $9,011,232 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $11,218,006 | CurrentTaxYearAmt |
| Total | $45,896,018 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $8,563,585 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,966,916 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,136,279 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $9,011,232 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $11,218,006 | CurrentTaxYearAmt |
| Total | $45,896,018 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $11,765,058 | SubstantialContributorsTotAmt |
| Public Support Total170 | $34,130,960 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $377 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,220 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,560 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,654 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $883 | CurrentTaxYearAmt |
| Total | $7,694 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $45,903,712 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $2,224,115 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.74350 | PublicSupportCY170Pct |
| Public Support PY170 | 0.81180 | 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
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $13,325 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $176,675 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $190,000 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $10,662,988 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $10,852,988 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $692,649 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $173,162 | FilingOrganizationsTotalAmt |
Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $477,643 | CurrentYearMinus3Amt |
| Current Year Minus2 | $605,138 | CurrentYearMinus2Amt |
| Current Year Minus1 | $584,412 | CurrentYearMinus1Amt |
| Current Year | $692,649 | CurrentYearAmt |
| Total | $2,359,842 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $3,539,763 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $214,000 | CurrentYearMinus3Amt |
| Current Year Minus2 | $170,000 | CurrentYearMinus2Amt |
| Current Year Minus1 | $230,000 | CurrentYearMinus1Amt |
| Current Year | $190,000 | CurrentYearAmt |
| Total | $804,000 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $119,411 | CurrentYearMinus3Amt |
| Current Year Minus2 | $151,285 | CurrentYearMinus2Amt |
| Current Year Minus1 | $146,103 | CurrentYearMinus1Amt |
| Current Year | $173,162 | CurrentYearAmt |
| Total | $589,961 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $884,942 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus1 | $14,710 | CurrentYearMinus1Amt |
| Current Year | $13,325 | CurrentYearAmt |
| Total | $28,035 | TotalAmt |
Schedule D IRS990ScheduleD
Leasehold Improvements LeaseholdImprovementsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $6,180 | OtherCostOrOtherBasisAmt |
| Depreciation | $1,248 | DepreciationAmt |
| Book Value | $4,932 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $127,188 | OtherCostOrOtherBasisAmt |
| Depreciation | $101,903 | DepreciationAmt |
| Book Value | $25,285 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $37,810 | OtherCostOrOtherBasisAmt |
| Depreciation | $33,770 | DepreciationAmt |
| Book Value | $4,040 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $34,257 | TotalBookValueLandBuildingsAmt |
| Total Rev Etc Audited Fincl Stmt | $11,435,667 | TotalRevEtcAuditedFinclStmtAmt |
| Revenue Not Reported | $0 | RevenueNotReportedAmt |
| Revenue Subtotal | $11,435,667 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $11,435,667 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $10,852,988 | TotExpnsEtcAuditedFinclStmtAmt |
| Expenses Not Reported | $0 | ExpensesNotReportedAmt |
| Expenses Subtotal | $10,852,988 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $10,852,988 | TotalExpensesPerForm990Amt |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | EUROPE | RegionTxt |
| Offices | 0 | OfficesCnt |
| Employee | 0 | EmployeeCnt |
| Type Of Activities Conducted | GRANTS TO RECIPIENTS LOCATED IN REGION | TypeOfActivitiesConductedTxt |
| Region Total Expenditures | $7,000 | RegionTotalExpendituresAmt |
| 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 | $7,000 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $7,000 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | EUROPE | RegionTxt |
| Purpose Of Grant | INTERNATIONAL SCHOOL OF BIOLOGICAL MAGNETIC RESONANCE: 17TH COURSE | PurposeOfGrantTxt |
| Cash Grant | $7,000 | CashGrantAmt |
| 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 III ACCOUNTING METHOD: | FormAndLineReferenceDesc |
Schedule G IRS990ScheduleG
| Field | Value | IRS element (for citing) |
|---|---|---|
| In Person Solicitations | Yes (X) | InPersonSolicitationsInd |
| Agrmt Prof Fundraising Acty | 0 | AgrmtProfFundraisingActyInd |
Fundraiser Activity Info FundraiserActivityInfoGrp
Organization Business Name OrganizationBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FISHBAIT MARKETING LLC | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1968 LONG CREEK ROAD | AddressLine1Txt |
| City | WADMALAW ISLAND | CityNm |
| State Abbreviation | SC | StateAbbreviationCd |
| ZIP | 29487 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Activity | CTC SPONSORSHIP FOR WHATABURGER | ActivityTxt |
| Fundraiser Control Of Funds | 0 | FundraiserControlOfFundsInd |
| Gross Receipts | $0 | GrossReceiptsAmt |
| Retained By Contractor | $17,961 | RetainedByContractorAmt |
| Net To Organization | -$17,961 | NetToOrganizationAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Retained By Contractors | $17,961 | TotalRetainedByContractorsAmt |
| Total Net To Organization | -$17,961 | TotalNetToOrganizationAmt |
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | SAM'S NIGHT | Event1Nm |
| Gross Receipts Event1 | $314,293 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $314,293 | CharitableContriEvent1Amt |
| Other Direct Expenses Event1 | $1,372 | OtherDirectExpensesEvent1Amt |
| Event2 | GR. 1K | Event2Nm |
| Gross Receipts Event2 | $105,594 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $105,594 | CharitableContriEvent2Amt |
| Other Direct Expenses Event2 | $19,664 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 103 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $465,416 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $465,416 | CharitableContriOtherEventsAmt |
| Oth Direct Expnss Other Events | $299,691 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $885,303 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $885,303 | CharitableContributionsTotAmt |
| Oth Direct Expnss Total Events | $320,727 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $320,727 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$320,727 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (58 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|
| AMERICAN COLLEGE OF MEDICAL GENETICS AND GENOMICS | ||||||||
| 7101 WISCONSIN AVENUE STE 1101 | BETHESDA | MD | 20814 | 521774227 | 501(C)(6) | $284,679 | NEWBORN SCREENING PILOT PROGRAM | |
| ANALYSIS GROUP INC | ||||||||
| 111 HUNTINGTON AVENUE 14TH FLOOR | BOSTON | MA | 02199 | 042727260 | $37,500 | SERVICES IN SUPPORT OF CTAP COLLABORATION | ||
| ARKANSAS CHILDREN'S HOSPITAL | ||||||||
| 1 CHILDRENS WAY SLOT 512-15 | LITTLE ROCK | AR | 72202 | 710568795 | 501(C)(3) | $5,000 | CERTIFIED DUCHENNE CARE CENTER | |
| BIOSYMETRICS INC | ||||||||
| 315 MAIN STREET 2ND FLOOR | HUNTINGTON | NY | 11743 | 821509054 | $15,000 | ANALYSIS OF BIOMARKERS FROM PATIENT SAMPLES | ||
| BOARD OF REGENTS UNIVERSITY OF WISCONSIN SYSTEM | ||||||||
| DRAWER 538 | MILWAUKEE | WI | 53278 | 396006492 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| CENTER FOR MEDICAL TECHNOLOGY POLICY | ||||||||
| 401 EAST PRATT STREET SUITE 631 | BALTIMORE | MD | 21202 | 271203017 | 501(C)(3) | $103,796 | ASSISTANCE IN CONVENING A ONE-DAY MULTISTAKEHOLDER MEETING TO DISCUSS POSSIBLE CORE OUTCOME SET | |
| CHILDREN'S COLORADO | ||||||||
| 13123 EAST 16TH AVE BOX 285 | AURORA | CO | 80045 | 742161737 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| CHILDREN'S HOSPITAL OF LOS ANGELES | ||||||||
| 4650 SUNSET BLVD MS82 | LOS ANGELES | CA | 90027 | 951690977 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| CHILDREN'S HOSPITAL OF THE KING'S DAUGHTERS | ||||||||
| 601 CHILDRENS LANE | NORFOLK | VA | 23507 | 540506321 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| CHILDREN'S HOSPITAL OF WISCONSIN | ||||||||
| 9000 W WISCONSIN AVENUE | MILWAUKEE | WI | 53226 | 391500075 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| CHILDREN'S MERCY KANSAS CITY | ||||||||
| RESEARCH ADMINISTRATION PO BOX | KANSAS CITY | MO | 64108 | 440605373 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | 803852 |
| CHILDREN'S NATIONAL HEALTH SYSTEM | ||||||||
| NEUROMUSCULAR CLINIC 111 MICHIGAN | WASHINGTON | DC | 20008 | 530196580 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | AVENUE NW SUITE 1090 PMR ADMIN OFFI |
| CINCINNATI CHILDREN'S HOSPITAL MC | ||||||||
| 3333 BURNET AVENUE | CINCINNATI | OH | 45229 | 310833936 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| CRITICAL PATH INSTITUTE | ||||||||
| 1730 E RIVER ROAD SUITE 200 | TUCSON | AZ | 85718 | 201991334 | 501(C)(3) | $100,000 | DUCHENNE REGULATORY SCIENCE CONSORTIUM (D-RSC) | |
| CURATORS OF THE UNIVERSITY OF MISSOURI | ||||||||
| PO BOX 807012 | KANSAS CITY | MO | 64180 | 436003859 | $30,000 | DYSTROPHIN STRUCTURE AND HEART FUNCTION | ||
| CURATORS OF THE UNIVERSITY OF MISSOURI | ||||||||
| PO BOX 807012 | KANSAS CITY | MO | 64180 | 436003859 | $3,705 | CARDIAC AND SKELETAL MUSCLE FUNCTION EVALUATION | ||
| CURATORS OF THE UNIVERSITY OF MISSOURI | ||||||||
| PO BOX 807012 | KANSAS CITY | MO | 64108 | 436003859 | $5,000 | CERTIFIED DUCHENNE CARE CENTER | ||
| DUKE UNIVERSITY | ||||||||
| PO BOX 602651 | CHARLOTTE | NC | 28260 | 560532129 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| GILLETTE CHILDREN'S SPECIALTY HOSPITAL | ||||||||
| 200 UNIVERSITY AVENUE EAST | ST PAUL | MN | 55101 | 363379150 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| HEALTH CHILDREN'S HOSPITAL OF RICHMOND VCU | ||||||||
| PO BOX 843039 BIO TECH BLDG- 800 | RICHMOND | VA | 23284 | 546001758 | $5,000 | CERTIFIED DUCHENNE CARE CENTER | EAST LEIGH STREET SUITE 3100 | |
| HEALTH RESEARCH INC | ||||||||
| RIVERVIEW CENTER 150 BROADWAY SUITE | MENANDS | NY | 12204 | 141402155 | $1,387,199 | NEWBORN SCREENING PILOT PROGRAM | 580 | |
| HOPE FOR GUS | ||||||||
| 583 GREENFIELD ROAD | PETERBOROUGH | NH | 03458 | 272224833 | 501(C)(3) | $10,000 | EVEREST TO END DUCHENNE SPONSORSHIP | |
| HUGO W MOSER RESINST AT KENNEDY KREIGERINC CTR GENETIC MUSCULAR DISOR | ||||||||
| 707 NORTH BROADWAY | BALTIMORE | MD | 21205 | 521524967 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| INSTITUTE ADVANCED CLINCAL TRIALS FOR CHILDREN | ||||||||
| 9211 CORPORATE BLVD SUITE 260 | ROCKVILLE | MD | 20850 | 812076517 | $200,000 | FEASIBILITY ANALYSIS CLINICAL TRIAL PLATFORM | ||
| LUCILE PACKARD FOUNDATION FOR CHILDREN'S HEALTH | ||||||||
| 400 HAMILTON AVE SUITE 340 | PALO ALTO | CA | 94306 | 770440090 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| ANN & ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO | ||||||||
| DIVISION OF NEUROLOGY 225 E CHICAGO | CHICAGO | IL | 60611 | 362170833 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | AVENUE |
| MASSACHUSETTS GENERAL HOSPITAL - RESEARCH | ||||||||
| 55 FRUIT STREET | BOSTON | MA | 02144 | 042697983 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| MICHIGAN STATE UNIVERSITY BOARD OF TRUSTEES | ||||||||
| 426 AUDITORIUM ROAD ROOM 2 | EAST LANSING | MI | 48824 | 386005984 | $235,000 | ASSESSMENT OF EFFICACY OF PASSIVE EXOSKELETONS WITH MOTOR ACUATION ASSIST FOR PATIENTS WITH DMD | ||
| NATIONWIDE CHILDRENS HOSPITAL | ||||||||
| 700 CHILDRENS DRIVE | COLUMBUS | OH | 43205 | 314379441 | 501(C)(3) | $30,000 | NCH/OSU MYOLOGY COURSE | |
| NEW YORK UNIVERSITY | ||||||||
| NYU LANGONE ONE PARK AVENUE 5TH | NEW YORK | NY | 10016 | 472613531 | 501(C)(3) | $75,000 | WORKING GROUP ON PEDIATRIC GENE THERAPY AND MEDICAL ETHICS | FLOOR |
| NORTHWESTERN UNIVERSITY | ||||||||
| 633 CLARK ROOM G-547 | EVANSTON | IL | 60208 | 362167817 | 501(C)(3) | $55,200 | WELLSTONE SUPPLEMENT | |
| OHIO STATE UNIVERSITY | ||||||||
| 1960 KENNY ROAD | COLUMBUS | OH | 43210 | 316025986 | $158,338 | INTERNATIONAL STUDY OF TREATMENT PREFERENCES FOR DMD | ||
| OHIO STATE UNIVERSITY | ||||||||
| 1960 KENNY ROAD | COLUMBUS | OH | 43210 | 316025986 | $50,000 | RESCUE OF CARDIAC DYSTROPHIN AND FUNCTION IN DMD | ||
| REGENTS OF THE UNIVERSITY OF CALIFORNIA- UCSF | ||||||||
| UCSF MAIN DEPOSITORY PO BOX 748872 | LOS ANGELES | CA | 90074 | 946036493 | $10,000 | CERTIFIED DUCHENNE CARE CENTER | ||
| REGENTS OF THE UNIVERSITY OF CALIFORNIA- LA | ||||||||
| PO BOX 957089 1125 MURPHY HALL 405 | LOS ANGELES | CA | 90095 | 956006143 | $10,000 | CERTIFIED DUCHENNE CARE CENTER | HILGARD | |
| REGENTS OF THE UNIVERSITY OF CALIFORNIA- LA | ||||||||
| PO BOX 957089 1125 MURPHY HALL 405 | LOS ANGELES | CA | 90095 | 956006143 | $100,000 | IDENTIFICATION OF IMMUNE SUBPOPULATIONS IN DMD PBMC AND MUSCLE INFILTRATES USING CYTOF | HILGARD | |
| REGENTS OF THE UNIVERSITY OF CALIFORNIA- LA | ||||||||
| PO BOX 957089 1125 MURPHY HALL 405 | LOS ANGELES | CA | 90095 | 956006143 | $25,000 | OPTIMIZATION OF A CRISPR/CAS9 PLATFORM FOR DMD | HILGARD | |
| REGENTS OF THE UNIVERSITY OF CALIFORNIA- LA | ||||||||
| PO BOX 957089 1125 MURPHY HALL 405 | LOS ANGELES | CA | 90095 | 956006143 | $59,866 | WELLSTONE SUPPLEMENT | HILGARD | |
| REGENTS OF THE UNIVERSITY OF CALIFORNIA- DAVIS | ||||||||
| PO BOX 989062 | WEST SACRAMENTO | CA | 95798 | 946036494 | $11,000 | CERTIFIED DUCHENNE CARE CENTER 2018 | ||
| RESEARCH FOUNDATION FOR SUNY | ||||||||
| UNIVERSITY OF MISSOURI AR PO BOX | BINGHAMTON | NY | 13902 | 141368361 | 501(C)(3) | $164,503 | EFFECT OF IMMUNOMODULATORY TREATMENTS ON IMMUNE RESPONSE AFTER GENE CORRECTION IN DMD | 6000 |
| RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL | ||||||||
| 700 CHILDRENS DRIVE | COLUMBUS | OH | 43205 | 316056230 | $175,000 | DETERMINE INCIDENCE AND PROGNOSIS OF CLINICALLY SIGNIFICANT CARDIAC, SKELETAL MUSCLE AND COGNITIVE IMPAIRMENT IN CARRIERS OF DMD AND BMD | ||
| RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL | ||||||||
| 700 CHILDRENS DRIVE | COLUMBUS | OH | 43205 | 316056230 | $40,000 | CARDIAC MAGNETIC RESONANCE IMAGING NATURAL HISTORY STUDY IN DMD | ||
| RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL | ||||||||
| 700 CHILDRENS DRIVE | COLUMBUS | OH | 43205 | 316056230 | $10,000 | CERTIFIED DUCHENNE CARE CENTER | ||
| SEATTLE CHILDREN'S HOSPITAL FOUNDATION | ||||||||
| 4800 SAND POINT WAY NE M/S S-200 | SEATTLE | WA | 98145 | 911156519 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| SOMALOGIC INC | ||||||||
| 2945 WILDERNESS PLACE | BOULDER | CO | 80301 | 052219896 | $24,800 | BIOMARKERS EXPLORATION | ||
| ALFRED I DUMONT HOSPITAL FOR CHILDREN OF THE NEMOURS FOUNDATION | ||||||||
| 10140 CENTURION PWY NORTH | JACKSONVILLE | FL | 32256 | 590634433 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| REGENTS OF THE UNIVERSITY OF CALIFORNIA- DAVIS | ||||||||
| PO BOX 989062 | WEST SACRAMENTO | CA | 95798 | 946036494 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| UNIVERSITY OF FLORIDA | ||||||||
| 219 GRINTER HAL PO BOX 115500 | GAINESVILLE | FL | 32611 | 596002052 | 501(C)(3) | $105,000 | WELLSTONE SUPPLEMENT | |
| UNIVERSITY OF FLORIDA FOUNDATION | ||||||||
| UF- MYOLOGY INSTITUTE 1200 NEWELL | GAINESVILLE | FL | 32610 | 590974739 | 501(C)(3) | $3,407 | BIOREPOSITORY | DRIVE ARB R5-234 PO BOX 100267 |
| UNIVERSITY OF FLORIDA FOUNDATION | ||||||||
| UF- MYOLOGY INSTITUTE 1200 NEWELL | GAINESVILLE | FL | 32610 | 590974739 | 501(C)(3) | $329,356 | AAV VIRUS-PREP AND CARDIAC CONSTRUCTS/VECTORS | DRIVE ARB R5-234 PO BOX 100267 |
| UNIVERSITY OF FLORIDA FOUNDATION | ||||||||
| UF- MYOLOGY INSTITUTE 1200 NEWELL | GAINESVILLE | FL | 32610 | 590974739 | 501(C)(3) | $275,000 | PRECLINICAL ASSESSMENT OF THERAPEUTICS LAB | DRIVE ARB R5-234 PO BOX 100267 |
| UNIVERSITY OF IOWA | ||||||||
| 118 S CLINTON STREET | IOWA CITY | IA | 52242 | 426004813 | $10,000 | CERTIFIED DUCHENNE CARE CENTER | ||
| UNIVERSITY OF ROCHESTER | ||||||||
| 518 HYLAN BUILDING | ROCHESTER | NY | 14627 | 160743209 | $10,000 | CERTIFIED DUCHENNE CARE CENTER | ||
| UNIVERSITY OF ROCHESTER MEDICAL CENTER | ||||||||
| DEPT OF NEUROLOGY 601 ELMWOOD | ROCHESTER | NY | 14642 | 160743209 | $98,300 | DEVELOPMENT AND INTERNATIONAL VALIDATION OF A NOVEL, DISEASE-SPECIFIC CAREGIVER-REPORTED OUTCOME MEASURE | AVENUE BOX 673 | |
| UNIVERSITY OF UTAH | ||||||||
| GRANTS AND CONTRACTS ACCT 201 S | SALT LAKE CITY | UT | 84112 | 876000525 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | PRESIDENTS CIRCLE RM 406 PARK BLDG |
| UNIVERSITY OF VA DEPARTMENT OF PEDIATRICS | ||||||||
| 101 HOSPITAL DRIVE DAVIS 5 RM 5293 | CHARLOTTESVILLE | VA | 22908 | 546001796 | $10,000 | CERTIFIED DUCHENNE CARE CENTER | ||
| YALE UNIVERSITY | ||||||||
| 333 CEDAR STREET LMP 3088 | NEW HAVEN | CT | 06510 | 060646973 | 501(C)(3) | $10,000 | CERTIFIED DUCHENNE CARE CENTER | |
| CHILDREN'S NATIONAL MEDICAL CENTER CHILDRENS RESEARCH INSTITUTE | ||||||||
| 801 ROEDER ROAD STE 500 | SILVER SPRING | MD | 20910 | 521654453 | 501(C)(3) | -$3,374 | UNEXPENDED FUNDS. INVESTIGATION OF THE EFFICIENCY FOR EXON SKIPPING AND MODE OF ENTRY INTO MUSCLE BY ANTISENSE CONSTRUCTS OF DIFFERENT CHEMISTRIES | |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | THE ORGANIZATION HAS A STANDARDIZED GRANT TEMPLATE THAT REQUIRES REGULAR PERIODIC REPORTING OF THE USE OF GRANT FUNDS AND A PROGRESS REPORT OF THE GRANT ACTIVITIES. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| 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 (8 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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| PATRICIA A FURLONG | ||||||||||||||
| FOUNDING CEO & PRESIDENT | $236,487 | $0 | $0 | $0 | $0 | $0 | $9,579 | $0 | $1,122 | $0 | $247,188 | $0 | $0 | $0 |
| KIMBERLY GALBERAITH | ||||||||||||||
| CHIEF OPERATING OFFICER | $175,694 | $0 | $0 | $0 | $0 | $0 | $9,230 | $0 | $27,079 | $0 | $212,003 | $0 | $0 | $0 |
| ABBY H BRONSON | ||||||||||||||
| SENIOR VICE PRESIDENT, RESEARCH STRA | $200,496 | $0 | $0 | $0 | $0 | $0 | $8,201 | $0 | $14,969 | $0 | $223,666 | $0 | $0 | $0 |
| KELLY J DOUGHERTY | ||||||||||||||
| SENIOR VICE PRESIDENT, FINANCE & ADM | $167,100 | $0 | $0 | $0 | $0 | $0 | $8,046 | $0 | $1,870 | $0 | $177,016 | $0 | $0 | $0 |
| RYAN K FISCHER | ||||||||||||||
| SENIOR VICE PRESIDENT, COMMUNITY ENG | $148,833 | $0 | $0 | $0 | $0 | $0 | $5,316 | $0 | $7,200 | $0 | $161,349 | $0 | $0 | $0 |
| KAYLAN MOITOSO | ||||||||||||||
| SENIOR VICE PRESIDENT, DEVELOPMENT | $158,908 | $0 | $0 | $0 | $0 | $0 | $8,179 | $0 | $454 | $0 | $167,541 | $0 | $0 | $0 |
| WILLIAM P NOLAN | ||||||||||||||
| SENIOR VICE PRESIDENT, COMMUNICATION | $151,560 | $0 | $0 | $0 | $0 | $0 | $7,594 | $0 | $454 | $0 | $159,608 | $0 | $0 | $0 |
| ANNE KENNEDY | ||||||||||||||
| SENIOR VICE PRESIDENT, LEGISLATION & | $140,566 | $0 | $0 | $0 | $0 | $0 | $7,370 | $0 | $12,082 | $0 | $160,018 | $0 | $0 | $0 |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 18 | ContributionCnt |
| Noncash Contributions Rpt F990 | $779,245 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV ON DATE OF GIFT | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | Yes (1) | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | Yes (1) | ThirdPartiesUsedInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 32B: | FormAndLineReferenceDesc |
| Explanation | THE ORGANIZATION USES CARS FOR CAUSES, ANOTHER TAX-EXEMPT ORGANIZATION, WHEN A VEHICLE IS DONATED. THE DONOR DONATES THE VEHICLE TO CARS FOR CAUSES AND THE PROCEEDS OF THE SALE ARE FORWARDED TO THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH, INC. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 8B | NO COMMITTEE HAS AUTHORITY TO ACT ON BEHALF OF THE ENTIRE BOARD. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE 990 IS COMPLETED BY AN INDEPENDENT CPA FIRM AND A DRAFT IS PRESENTED TO THE BOARD MEMBERS FOR REVIEW. THE BOARD THEN VOTES TO APPROVE THE 990 BEFORE IT IS SIGNED AND MAILED. IF THERE ARE ANY COMMENTS OR QUESTIONS THE ISSUE IS RESOLVED PRIOR TO FILING THE 990 WITH THE IRS. |
| FORM 990, PART VI, SECTION B, LINE 12C | THE SECRETARY IS RESPONSIBLE TO ENSURE EACH BOARD MEMBER HAS COMPLETED THEIR WRITTEN STATEMENT ANNUALLY. |
| FORM 990, PART VI, SECTION B, LINE 15 | PARENT PROJECT MUSCULAR DYSTROPHY CEO COMPENSATION REVIEW PROCESS THE PRESIDENT AND CEO IS THE PRINCIPAL REPRESENTATIVE OF THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH ("PPMD"), AND THE PERSON RESPONSIBLE FOR THE EFFICIENT OPERATION OF THE ORGANIZATION. THE ANNUAL PROCESS FOR DETERMINING HIS/HER COMPENSATION IS AS FOLLOWS: PPMD SHALL [EITHER THE FULL BOARD OR A COMPENSATION COMMITTEE/EXECUTIVE COMMITTEE] ANNUALLY EVALUATE THE PRESIDENT AND CEO ON HIS/HER PERFORMANCE, AND ASK FOR HIS/HER INPUT ON MATTERS OF PERFORMANCE AND COMPENSATION. BOARD APPROVAL. THE BOARD COMMITTEE WILL OBTAIN RESEARCH AND INFORMATION TO MAKE A RECOMMENDATION TO THE FULL BOARD FOR THE COMPENSATION (SALARY AND BENEFITS) OF THE PRESIDENT AND CEO BASED ON A REVIEW OF COMPARABILITY DATA. THIS DATA MAY INCLUDE THE FOLLOWING: - SALARY AND BENEFIT COMPENSATION STUDIES BY INDEPENDENT SOURCES; - WRITTEN JOB OFFERS FOR POSITIONS AT SIMILAR ORGANIZATIONS; - DOCUMENTED TELEPHONE CALLS ABOUT SIMILAR POSITIONS AT BOTH NONPROFIT AND FOR-PROFIT ORGANIZATIONS; AND - INFORMATION OBTAINED FROM THE IRS FORM 990 FILINGS OF SIMILAR ORGANIZATIONS. |
| FORM 990, PART VI, SECTION C, LINE 19 | AVAILABLE UPON REQUEST. |
| FORM 990. PART XII, LINE 2C | THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR. |