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THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC: Form 990, tax year 2020

View the entire original 990 at ProPublica ↗

Organization
THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC (EIN 31-1405490)
Tax period
2020-01-01 to 2020-12-31
Filed
2021-11-15
IRS object ID
202113199349310076
Schema version
2020v4.1
Source
Download XML · Original 990 at ProPublica

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

Return header ReturnHeader

FieldValueIRS element (for citing)
Return2021-11-15T12:03:36-06:00ReturnTs
Tax Period End2020-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN223604710PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1JAMES M WOOD CPABusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line1603B OMNI DRIVEAddressLine1Txt
CityHILLSBOROUGHCityNm
State AbbreviationNJStateAbbreviationCd
ZIP08844ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2020-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN311405490EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1THE PARENT PROJECT FOR MUSCULARBusinessNameLine1Txt
Business Name Line2DYSTROPHY RESEARCH INCBusinessNameLine2Txt
FieldValueIRS element (for citing)
Business Name ControlPAREBusinessNameControlTxt
Phone2012508440PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11012 14TH STR NW NO 500AddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20005ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonPATRICIA A FURLONGPersonNm
Person TitleFOUNDING PRESIDENT/CEOPersonTitleTxt
Phone2012508440PhoneNum
Signature2021-11-15SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstPATRICIAPersonFirstNm
Person LastFURLONGPersonLastNm
FieldValueIRS element (for citing)
SSN999009999SSN

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJAMES M WOODPreparerPersonNm
PTINP00310420PTIN
Phone9084311700PhoneNum
Preparation2021-11-15PreparationDt
Self EmployedYes (X)SelfEmployedInd

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

FieldValueIRS element (for citing)
Trusted Customer2TrustedCustomerCd
Authentication Assurance LevelAAL1AuthenticationAssuranceLevelCd
Identity Assurance LevelIAL1IdentityAssuranceLevelCd
FieldValueIRS element (for citing)
Tax2020TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerPATRICIA A FURLONGPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line11012 14TH STR NW NO 500AddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20005ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$9,957,876GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.PARENTPROJECTMD.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1997FormationYr
Legal Domicile StateOHLegalDomicileStateCd
Activity Or MissionEND DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE.ActivityOrMissionDesc
Voting Members Governing Body14VotingMembersGoverningBodyCnt
Voting Members Independent14VotingMembersIndependentCnt
Total Employee24TotalEmployeeCnt
Total Volunteers988TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$11,218,006PYContributionsGrantsAmt
CY Contributions Grants$8,889,998CYContributionsGrantsAmt
PY Program Service Revenue$536,156PYProgramServiceRevenueAmt
CY Program Service Revenue$403,270CYProgramServiceRevenueAmt
PY Investment Income$2,232PYInvestmentIncomeAmt
CY Investment Income$1,780CYInvestmentIncomeAmt
PY Other Revenue-$320,727PYOtherRevenueAmt
CY Other Revenue$264,042CYOtherRevenueAmt
PY Total Revenue$11,435,667PYTotalRevenueAmt
CY Total Revenue$9,559,090CYTotalRevenueAmt
PY Grants And Similar Paid$4,455,275PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$2,689,159CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$3,127,518PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$2,739,629CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$720,711CYTotalFundraisingExpenseAmt
PY Other Expenses$3,270,195PYOtherExpensesAmt
CY Other Expenses$2,436,850CYOtherExpensesAmt
PY Total Expenses$10,852,988PYTotalExpensesAmt
CY Total Expenses$7,865,638CYTotalExpensesAmt
PY Revenues Less Expenses$582,679PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$1,693,452CYRevenuesLessExpensesAmt
Total Assets BOY$4,713,542TotalAssetsBOYAmt
Total Assets EOY$7,136,426TotalAssetsEOYAmt
Total Liabilities BOY$361,870TotalLiabilitiesBOYAmt
Total Liabilities EOY$1,080,993TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$4,351,672NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$6,055,433NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionTHE 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 Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$5,341,667ExpenseAmt
Grant$2,669,159GrantAmt
Revenue$73,920RevenueAmt
DescRESEARCHPPMD'S RESEARCH PROGRAM 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. IN ADDITION TO SIGNIFICANT PRE-CLINICAL AND ACADEMIC RESEARCH FUNDING, PPMD MAKES INVESTMENTS IN EARLY-STAGE BIOPHARMACEUTICAL COMPANIES TO CATALYZE DEVELOPMENT OF NOVEL THERAPIES TO TREAT DUCHENNE AND BECKER. 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 PROGRAM STRIVES TO ENSURE THAT PEOPLE LIVING WITH DUCHENNE ARE LIVING LONGER, STRONGER LIVES, BY HELPING PROVIDE ACCESS EXPERT HEALTHCARE PROVIDERS, A COMPREHENSIVE TEAM OF SUB-SPECIALISTS, AND CUTTING EDGE TREATMENTS. PPMD 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. PPMD'S CERTIFIED DUCHENNE CARE CENTER PROGRAM HELPS TO ENSURE THAT CENTERS COMPLY WITH THE STANDARDS OF CARE AND SERVICES THAT HAVE BEEN ESTABLISHED IN THE DUCHENNE CARE GUIDELINES. ALL CERTIFIED DUCHENNE CARE CENTERS HAVE MET THE REQUIREMENTS FOR, AND AGREE TO PROVIDE, OPTIMAL STANDARDIZED CARE AND SERVICES.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$873,169ExpenseAmt
DescEDUCATIONPPMD'S EDUCATION INITIATIVES INCREASE 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 NATIONAL AND INTERNATIONAL ORGANIZATIONS TO DEVELOP AND DISSEMINATE EDUCATIONAL RESOURCES APPROPRIATE FOR THE GLOBAL DUCHENNE COMMUNITY.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$364,011ExpenseAmt
Grant$20,000GrantAmt
DescADVOCACYPPMD'S ADVOCACY EFFORTS ARE FOCUSED ON ADVANCING CARE AND TREATMENTS FOR DUCHENNE BY LEVERAGING FEDERAL RESOURCES, BUILDING PARTNERSHIPS, AND CREATING REGULATORY PROCEDURES AND INFRASTRUCTURE. WE EMPOWER ADVOCATES WITH THE TOOLS AND INFORMATION TO ENGAGE WITH CONGRESSIONAL REPRESENTATIVES TO FOSTER DUCHENNE CHAMPIONS WITHIN CONGRESS AND TO ADVANCE LEGISLATION AND REGULATORY POLICIES, ENSURING THAT DUCHENNE PRIORITIES ARE REFLECTED ACROSS ALL GOVERNMENT AGENCIES.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$6,578,847TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying ActivitiesYes (1)LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related InvstYes (1)ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other LiabilitiesYes (1)ReportOtherLiabilitiesInd
Include FIN48 Footnote0IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign Activities0ForeignActivitiesInd
More Than5000 K To Org0MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash ContriYes (1)DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document36IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee24EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members14GoverningBodyVotingMembersCnt
Independent Voting Member14IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of Committees0MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process OtherYes (1)CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCOStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldINStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1THE ORGANIZATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone2012508440PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11012 14TH STR NW NO 500AddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20005ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (24 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeIndFormer Ofcr Director TrusteeFormerOfcrDirectorTrusteeInd
ANESSA FEHSENFELD
PRESIDENT8.00Yes (X)Yes (X)$0$0$0
JOHN KILLIAN
TREASURER8.00Yes (X)Yes (X)$0$0$0
JOANNA JOHNSON
SECRETARY6.00Yes (X)Yes (X)$0$0$0
RASHA ALNAIBARI
BOARD MEMBER2.00Yes (X)$0$0$0
JEFFREY BIGELOW
BOARD MEMBER2.00Yes (X)$0$0$0
LINDA CRIPE
BOARD MEMBER2.00Yes (X)$0$0$0
JONATHAN FINDER
BOARD MEMBER2.00Yes (X)$0$0$0
LANCE HESTER
BOARD MEMBER2.00Yes (X)$0$0$0
DAVID HOFSTEIN
BOARD MEMBER2.00Yes (X)$0$0$0
CHRISTOPHER JONES
BOARD MEMBER2.00Yes (X)$0$0$0
RICHARD KLEIN
BOARD MEMBER2.00Yes (X)$0$0$0
COLIN RENSCH
BOARD MEMBER2.00Yes (X)$0$0$0
DONNA SACCAMANNO
BOARD MEMBER2.00Yes (X)$0$0$0
BETH WHITE
BOARD MEMBER2.00Yes (X)$0$0$0
PATRICIA A FURLONG
FOUNDING CEO & PRESIDENT40.00Yes (X)$230,950$0$10,484
KIMBERLY GALBERAITH
CREATIVE DIRECTOR, PROJECTS AND EVENTS40.00$173,400$0$37,780Yes (X)
KAYLAN MOITOSO
CHIEF BUSINESS OFFICER40.00$172,658$0$9,358Yes (X)
RYAN FISCHER
CHIEF ADVOCACY OFFICER40.00$165,823$0$13,679Yes (X)
RACHEL SCHRADER
VP, CLINICAL CARE AND ED40.00$132,942$0$12,823Yes (X)
ANN MARTIN
VP, COMM RES AND GEN, DUCHENNE REG40.00$126,064$0$7,127Yes (X)
ERIC CAMINO
VP, RESEARCH AND CLINICAL INNOVATION40.00$111,415$0$20,238Yes (X)
ERIN DRESNICK
DIRECTOR, DEVELOPMENT40.00$110,308$0$8,541Yes (X)
KELLY J DOUGHERTY
FORMER SR. VP-FINANCE AND ADMINISTRATION40.00$148,604$0$9,353Yes (X)
WILLIAM P NOLAN
SR. VP- COMMUNICATIONS40.00$106,667$0$5,596Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$1,478,831TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$134,979TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K10IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedYes (1)FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (2 entries)

Address Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCdServicesServicesDescCompensationCompensationAmt
PROMETHEUS RESEARCH LLC
PO BOX 41125SAN JOSECA95160DATABASE/INFORMATION TECHNOLOGY SERVICES$107,700
OXFORD HEALTH PLANS
PO BOX 1697NEWARKNJ07101HEALTH INSURANCE$106,146
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K2CntrctRcvdGreaterThan100KCnt
Fundraising$1,536,341FundraisingAmt
All Other Contributions$7,353,657AllOtherContributionsAmt
Total Contributions$8,889,998TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
CONFERENCE INCOME900099$329,350$329,350
FEES FOR SERVICE900099$73,920$73,920
FieldValueIRS element (for citing)
Total Program Service Revenue$403,270TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$203TotalRevenueColumnAmt
Exclusion$203ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$266,606SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$265,029SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$1,577SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,577TotalRevenueColumnAmt
Related Or Exempt Func Income$1,577RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$0FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$1,536,341ContriRptFundraisingEventAmt
Fundraising Direct Expenses$133,757FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$133,757TotalRevenueColumnAmt
Exclusion-$133,757ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescOTHER INCOMEDesc
Business900099BusinessCd
Total Revenue Column$397,799TotalRevenueColumnAmt
Related Or Exempt Func Income$397,799RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total$397,799OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$9,559,090TotalRevenueColumnAmt
Related Or Exempt Func Income$802,646RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion-$133,554ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$2,689,159TotalAmt
Program Services$2,689,159ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$233,600TotalAmt
Program Services$175,200ProgramServicesAmt
Management And General$23,360ManagementAndGeneralAmt
Fundraising$35,040FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$2,121,589TotalAmt
Program Services$1,485,095ProgramServicesAmt
Management And General$263,737ManagementAndGeneralAmt
Fundraising$372,757FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$107,343TotalAmt
Program Services$75,677ProgramServicesAmt
Management And General$13,085ManagementAndGeneralAmt
Fundraising$18,581FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$107,308TotalAmt
Program Services$75,634ProgramServicesAmt
Management And General$13,081ManagementAndGeneralAmt
Fundraising$18,593FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$169,789TotalAmt
Program Services$119,701ProgramServicesAmt
Management And General$20,697ManagementAndGeneralAmt
Fundraising$29,391FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$81,870TotalAmt
Program Services$51,020ProgramServicesAmt
Management And General$30,850ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$17,225TotalAmt
Management And General$17,225ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$815,867TotalAmt
Program Services$744,635ProgramServicesAmt
Management And General$32,775ManagementAndGeneralAmt
Fundraising$38,457FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$57,760TotalAmt
Program Services$40,329ProgramServicesAmt
Management And General$11,315ManagementAndGeneralAmt
Fundraising$6,116FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$523,842TotalAmt
Program Services$399,987ProgramServicesAmt
Management And General$34,155ManagementAndGeneralAmt
Fundraising$89,700FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$147,543TotalAmt
Program Services$87,809ProgramServicesAmt
Management And General$27,259ManagementAndGeneralAmt
Fundraising$32,475FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$134,258TotalAmt
Program Services$126,783ProgramServicesAmt
Management And General$1,874ManagementAndGeneralAmt
Fundraising$5,601FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$151,951TotalAmt
Program Services$151,451ProgramServicesAmt
Management And General$242ManagementAndGeneralAmt
Fundraising$258FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$15,447TotalAmt
Program Services$10,848ProgramServicesAmt
Management And General$2,112ManagementAndGeneralAmt
Fundraising$2,487FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$21,713TotalAmt
Program Services$15,016ProgramServicesAmt
Management And General$2,986ManagementAndGeneralAmt
Fundraising$3,711FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
MEALS$189,819$181,675$5,387$2,757
BANK CHARGES$54,180$269$15,214$38,697
PRINTING & PUBLICATIONS$53,325$49,790$1,015$2,520
FEES & PERMITS$44,919$34,579$3,288$7,052

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$127,131TotalAmt
Program Services$64,190ProgramServicesAmt
Management And General$46,423ManagementAndGeneralAmt
Fundraising$16,518FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$7,865,638TotalAmt
Program Services$6,578,847ProgramServicesAmt
Management And General$566,080ManagementAndGeneralAmt
Fundraising$720,711FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$3,287,937BOYAmt
EOY$4,937,401EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$546,925BOYAmt
EOY$535,134EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$584,939BOYAmt
EOY$355,746EOYAmt

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

FieldValueIRS element (for citing)
BOY$25,728BOYAmt
EOY$29,158EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$204,312BOYAmt
EOY$105,167EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$176,949LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$152,368LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$34,257BOYAmt
EOY$24,581EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
EOY$260,308EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

FieldValueIRS element (for citing)
EOY$849,880EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$29,444BOYAmt
EOY$39,051EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$4,713,542BOYAmt
EOY$7,136,426EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$195,776BOYAmt
EOY$115,946EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$141,094BOYAmt
EOY$517,387EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$25,000BOYAmt
EOY$0EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$447,660EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$361,870BOYAmt
EOY$1,080,993EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$3,509,682BOYAmt
EOY$5,224,854EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$841,990BOYAmt
EOY$830,579EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,351,672BOYAmt
EOY$6,055,433EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,713,542BOYAmt
EOY$7,136,426EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$1,693,452ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$10,309NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Info In Schedule O Part XIIYes (X)InfoInScheduleOPartXIIInd
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$7,966,916CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$9,136,279CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$9,010,932CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$11,062,420CurrentTaxYearMinus1YearAmt
Current Tax Year$8,889,998CurrentTaxYearAmt
Total$46,066,545TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$7,966,916CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$9,136,279CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$9,010,932CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$11,062,420CurrentTaxYearMinus1YearAmt
Current Tax Year$8,889,998CurrentTaxYearAmt
Total$46,066,545TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$14,444,419SubstantialContributorsTotAmt
Public Support Total170$31,622,126PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,220CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,560CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,654CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$883CurrentTaxYearMinus1YearAmt
Current Tax Year$203CurrentTaxYearAmt
Total$7,520TotalAmt
FieldValueIRS element (for citing)
Total Support$46,074,065TotalSupportAmt
Gross Receipts Rltd Activities$2,615,700GrossReceiptsRltdActivitiesAmt
Public Support CY1700.68630PublicSupportCY170Pct
Public Support PY1700.74350PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule C IRS990ScheduleC

Total Grassroots Lobbying TotalGrassrootsLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$12,440FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$17,560FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$30,000FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$6,548,847FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$6,578,847FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$478,942FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$119,736FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$605,138CurrentYearMinus3Amt
Current Year Minus2$584,412CurrentYearMinus2Amt
Current Year Minus1$692,649CurrentYearMinus1Amt
Current Year$478,942CurrentYearAmt
Total$2,361,141TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$3,541,712LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$170,000CurrentYearMinus3Amt
Current Year Minus2$230,000CurrentYearMinus2Amt
Current Year Minus1$190,000CurrentYearMinus1Amt
Current Year$30,000CurrentYearAmt
Total$620,000TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$151,285CurrentYearMinus3Amt
Current Year Minus2$146,103CurrentYearMinus2Amt
Current Year Minus1$173,162CurrentYearMinus1Amt
Current Year$119,736CurrentYearAmt
Total$590,286TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$885,429GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus2$14,710CurrentYearMinus2Amt
Current Year Minus1$13,325CurrentYearMinus1Amt
Current Year$12,440CurrentYearAmt
Total$40,475TotalAmt

Schedule D IRS990ScheduleD

Leasehold Improvements LeaseholdImprovementsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$6,180OtherCostOrOtherBasisAmt
Depreciation$1,407DepreciationAmt
Book Value$4,773BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$132,959OtherCostOrOtherBasisAmt
Depreciation$116,158DepreciationAmt
Book Value$16,801BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$37,810OtherCostOrOtherBasisAmt
Depreciation$34,803DepreciationAmt
Book Value$3,007BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$24,581TotalBookValueLandBuildingsAmt

Invst Program Related Org InvstProgramRelatedOrgGrp

FieldValueIRS element (for citing)
DescCONVERTIBLE NOTEDesc
Book Value$849,880BookValueAmt
Method ValuationCMethodValuationCd
FieldValueIRS element (for citing)
Total Book Value Program Rltd$849,880TotalBookValueProgramRltdAmt

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescLOAN PAYABLEDesc
Amt$447,660Amt
FieldValueIRS element (for citing)
Total Liability$447,660TotalLiabilityAmt
Total Rev Etc Audited Fincl Stmt$9,569,399TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$10,309NetUnrealizedGainsInvstAmt
Revenue Not Reported$10,309RevenueNotReportedAmt
Revenue Subtotal$9,559,090RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$9,559,090TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$7,865,638TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$7,865,638ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$7,865,638TotalExpensesPerForm990Amt

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1SAM'S NIGHTEvent1Nm
Gross Receipts Event1$514,834GrossReceiptsEvent1Amt
Charitable Contri Event1$514,834CharitableContriEvent1Amt
Other Direct Expenses Event1$0OtherDirectExpensesEvent1Amt
Event2WALT DISNEY WORLD EVENTEvent2Nm
Gross Receipts Event2$294,788GrossReceiptsEvent2Amt
Charitable Contri Event2$294,788CharitableContriEvent2Amt
Other Direct Expenses Event2$55,551OtherDirectExpensesEvent2Amt
Other Events Total45OtherEventsTotalCnt
Gross Receipts Other Events$726,719GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$726,719CharitableContriOtherEventsAmt
Oth Direct Expnss Other Events$78,206OthDirectExpnssOtherEventsAmt
Gross Receipts Total$1,536,341GrossReceiptsTotalAmt
Charitable Contributions Tot$1,536,341CharitableContributionsTotAmt
Oth Direct Expnss Total Events$133,757OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$133,757DirectExpenseSummaryEventsAmt
Net Income Summary-$133,757NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (47 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxtAddress Line2USAddress/AddressLine2Txt
AKRON CHILDREN'S HOSPITAL
215 WEST BOWERY ST 4TH FLAKRONOH44308237114013501(C)(6)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
AMERICAN COLLEGE OF MEDICAL GENETICS AND GENOMICS
7101 WISCONSIN AVENUE SUITE 1101BETHESDAMD20814521774227501(C)(6)$63,510RESEARCH GRANT- NYS NEWBORN SCREENING
ARKANSAS CHILDREN'S HOSPITAL
1 CHILDRENS WAY SLOT 512-15LITTLE ROCKAR72202710568795501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN
UW-MADISON GAR ACCOUNT OFFICE OFMILWAUKEEWI53278396006492501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDSRESEARCH SPONSORED PROGRAMS
CHILDREN'S COLORADO DEPT OF REHAB
13123 E 16TH AVEAURORACO80045742161737501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
CHILDREN'S HOSPITAL OF LOS ANGELES
4650 SUNSET BLVD MS82LOS ANGELESCA90027951690977501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
CHILDREN'S HOSPITAL OF THE KING'S DAUGHTERS
601 CHILDRENS LANENORFOLKVA23507540506321501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
CHILDREN'S HOSPITAL OF WISCONSIN
9000 W WISCONSIN AVENUE CCC SUITEMILWAUKEEWI53226391500075501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS540
CHILDREN'S MERCY KANSAS CITY
RESEARCH ADMINISTRATION PO BOXKANSAS CITYMO64108440605373501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS803852
CHILDREN'S RESEARCH INSTITUTE
801 ROEDER ROAD SUITE 500SILVER SPRINGMD20910521654453501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
CINCINNATI CHILDREN'S HOSPITAL MC
MLC 4900 3333 BURNET AVENUECINCINNATIOH45229310833936501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
CRITICAL PATH INSTITUTE
1730 E RIVER ROAD SUITE 200TUCSONAZ85718201991334501(C)(3)$100,000RESEARCH- SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM
CURATORS OF THE UNIVERSITY OF MISSOURI
PO BOX 807012KANSAS CITYMO64180436003859$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
DUKE UNIVERSITY
A/R LOCKBOX PO BOX 602651CHARLOTTENC28260560532129501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
EVERYLIFE FOUNDATION FOR RARE DISEASES
1012 14TH STREET NW SUITE 500WASHINGTONDC20005264614274501(C)(3)$21,000RESEARCH PROGRAM- AWARD FOR GENETICS FELLOWSHIP
HEALTH CHILDREN'S HOSPITAL OF RICHMOND VCU
PO BOX 843039 BIO TECH ONE BLDG -RICHMONDVA23284546001758$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS800 EAST LEIGH STREET
HEALTH RESEARCH INC
RIVERVIEW CENTER 150 BROADWAY SUITEMENANDSNY12204141402155$600,000RESEARCH - NYS NEWBORN SCREENING PILOT560
INSTITUTE ADVANCE CLINICAL TRIALS FOR CHILDREN
9211 CORPORATE BLVDROCKVILLEMD20850812076517$151,240RESEARCH - MASTER PROTOCOL FOR DMD
KENNEDY KRIEGER INSTITUTE
707 NORTH BROADWAYBALTIMOREMD21205521524967501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
LUCILE PACKARD FOUNDATION FOR CHILDREN'S HEALTH
400 HAMILTON AVE SUITE 340PALO ALTOCA94306770440090501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
LURIE CHILDREN'S HOSPITAL OF CHICAGO
225 E CHICAGO AVENUE BOX 4CHICAGOIL60611362170833501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
MICHIGAN STATE UNIVERSITY BOARD OF TRUSTEES
426 AUDITORIUM ROAD ROOM 2EAST LANSINGMI48824386005984$15,009RESEARCH PROGRAM - AWARD FOR ROBOTICS INITIATIVE
NEW YORK UNIVERSITY
NYU LANGONE HEALTH ONE PARK PLAZANEW YORKNY10016472613531501(C)(3)$75,000RESEARCH PROGRAM - GENE THERAPY INITIATIVEAVENUE 5TH FLOOR
NORTHWESTERN UNIVERSITY
633 CLARKEVANSTONIL60208362167817501(C)(3)$55,200RESEARCH PROGRAM - WELLSTONE SUPPLEMENT
OHIO STATE UNIVERSITY
1960 KENNY ROADCOLUMBUSOH43210316025986$344,000RESEARCH PROGRAM - CARDIAC INITIATIVE (GENE EDITING TO CORRECT HEART FUNCTION)
REGENTS OF THE UNIVERSITY OF CALIFORNIA
695 CHARLES E YOUNG DRIVE S ROOMLOS ANGELESCA90095946036493$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS5506A - GONDA BLDG
REGENTS OF THE UNIVERSITY OF CALIFORNIA - LA
PO BOX 957089 1125 MURPHY HALLLOS ANGELESCA90095956006143$64,866RESEARCH PROGRAM - GENE THERAPY INITIATIVE (CRISPR/CAS9 OPTIMIZATION)
RESEARCH FOUNDATION FOR SUNY
GRANTS FINANCIAL MGMT UNIVERSITY OFBINGHAMTONNY13902141368361501(C)(3)$148,052RESEARCH PROGRAM - GENE THERAPY INITIATIVEMISSOURI AR PO BOX 6000
RESEARCH INST AT NATIONWIDE CHILDREN'S HOSPITAL
PO BOX 78000DETROITMI48278316056230$175,000RESEARCH PROGRAM - DMD CARRIER STUDY
SEATTLE CHILDREN'S HOSPITAL FOUNDATION
6901 SAND POINT WAY NE M/S S-200SEATTLEWA98155911156519501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
THE NEMOURS FOUNDATION
1600 ROCKLAND ROADWILMINGTONDE19803590634433501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
UC REGENTS UC DAVIS MEDICAL CTR
4860 Y STREET SUITE 3850SACRAMENTOCA95817946036494501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
UNIVERSITY OF FLORIDA-WELLSTONE
219 GRINTER HAL PO BOX 115500GAINESVILLEFL32611596002052501(C)(3)$299,445RESEARCH PROGRAM - WELLSTONE SUPPLEMENT
UNIVERSITY OF FLORIDA FOUNDATION- PAT LAB
1200 NEWELL DRIVE ARB R5-234GAINESVILLEFL32610590974739501(C)(3)$351,667RESEARCH PROGRAM - CARDIAC INITIATIVE
UNIVERSITY OF IOWA GRANT ACCOUNTING
118 SOUTH CLINTON STREETIOWA CITYIA52242426004813$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
UNIVERSITY OF ROCHESTER MEDICAL CENTER
DEPT OF NEUROLOGY 601 ELMWOODROCHESTERNY14642160743209$101,700RESEARCH PROGRAM - GENE THERAPY INITIATIVEAVENUE BOX 673
UNIVERSITY OF UTAH
201 S PRESIDENTS CIRCLE RM 406 PARKSALT LAKE CITYUT84112876000525501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDSBLDG
UNIVERSITY OF VIRGINIA
101 HOSPITAL DR DAVIS 5 RM 5293CHARLOTTESVILLEVA22908546001796$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
UT SOUTHWESTERN MEDICAL CENTER
5323 HARRY HINES BLVDDALLASTX75390752556007501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
YALE UNIVERSITY
OFFICE OF SPONSORED PROJECTS PO BOXNEW HAVENCT06508060646973501(C)(3)$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS1873
CASIMIR
36 CORDAGE PARK CIRCLE S 300PLYMOUTHMA02360810761070$6,500RESEARCH PROGRAM - PATIENT PREFERENCE STUDY
RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S
PO BOX 78000DETROITMI48278316056230$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS
UNIVERSITY OF ROCHESTER MEDICAL CENTER
DEPT OF NEUROLOGY 601 ELMWOODROCHESTERNY14642160743209$5,000CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDSAVENUE BOX 673
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS
CASHIERS OFFICE PO BOX 989062W SACRAMENTOCA95798946036494501(C)(3)-$312RESEARCH GRANT
UNIVERSITY OF ARIZONA
1303 E UNIVERSITY BLVD BOX 3TUCSONAZ85719742652689501(C)(3)-$700RESEARCH MEETING GRANT
NJIT
GRANTS AND CONTRACTS ACCT UNIVERSITNEWARKNJ07102226000910501(C)(3)-$19,669TRANSLATION OF AN UPPER EXTREMITY EXOSKELETON TO COMMUNITY USEHEIGHTS
CURATORS OF THE UNIVERSITY OF MISSOURI
PO BOX 807012KANSAS CITYMO64180436003859501(C)(3)-$33CARDIAC AND SKELETAL MUSCLE FUNCTION EVALUATION

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationTHE 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

FieldValueIRS element (for citing)
Compensation CommitteeYes (X)CompensationCommitteeInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org0CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org0CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (6 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountBonus Related OrganizationsBonusRelatedOrganizationsAmtOther Compensation Filing OrgOtherCompensationFilingOrgAmtOther Compensation Rltd OrgsOtherCompensationRltdOrgsAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
PATRICIA A FURLONG
FOUNDING CEO & PRESIDENT$220,950$0$10,000$0$0$0$9,357$0$1,127$0$241,434$0$0$0
KIMBERLY GALBERAITH
CREATIVE DIRECTOR, PROJECTS AND EVEN$173,400$0$0$0$0$0$9,238$0$28,542$0$211,180$0$0$0
KAYLAN MOITOSO
CHIEF BUSINESS OFFICER$167,658$0$5,000$0$0$0$8,899$0$459$0$182,016$0$0$0
RYAN FISCHER
CHIEF ADVOCACY OFFICER$160,823$0$5,000$0$0$0$5,918$0$7,761$0$179,502$0$0$0
KELLY J DOUGHERTY
FORMER SR. VP-FINANCE AND ADMINISTRA$148,604$0$0$0$0$0$7,474$0$1,879$0$157,957$0$0$0
WILLIAM P NOLAN
SR. VP- COMMUNICATIONS$106,667$0$0$0$0$0$5,333$0$263$0$112,263$0$0$0

Schedule M IRS990ScheduleM

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution4ContributionCnt
Noncash Contributions Rpt F990$515,028NoncashContributionsRptF990Amt
Method Of Determining RevenuesFMV ON DATE OF GIFTMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC GiftsYes (1)ReviewProcessUnusualNCGiftsInd
Third Parties Used0ThirdPartiesUsedInd

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (7 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION A, LINE 8BNO COMMITTEE HAS AUTHORITY TO ACT ON BEHALF OF THE ENTIRE BOARD.
FORM 990, PART VI, SECTION B, LINE 11BTHE 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 12CTHE SECRETARY IS RESPONSIBLE TO ENSURE EACH BOARD MEMBER HAS COMPLETED THEIR WRITTEN STATEMENT ANNUALLY.
FORM 990, PART VI, SECTION B, LINE 15PARENT 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 19AVAILABLE UPON REQUEST.
FORM 990, PART IX, LINE 11GCONSULTANTS: PROGRAM SERVICE EXPENSES 744,635. MANAGEMENT AND GENERAL EXPENSES 32,775. FUNDRAISING EXPENSES 38,457. TOTAL EXPENSES 815,867.
FORM 990, PART XII, LINE 2CTHE PROCESS HAS NOT CHANGED FROM PRIOR YEAR.