THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC: Form 990, tax year 2025

View the entire original 990 at ProPublica ↗

Organization
THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC (EIN 31-1405490)
Tax period
2025-01-01 to 2025-12-31
Filed
2026-08-17
IRS object ID
202622299349302077
Schema version
2025v4.2
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)
Return2026-08-17T11:51:46-05:00ReturnTs
Tax Period End2025-12-31TaxPeriodEndDt

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 Begin2025-01-01TaxPeriodBeginDt

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 STREET NW 500AddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20005ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonPATRICIA A FURLONGPersonNm
Person TitleFOUNDING PRESIDENT/CEOPersonTitleTxt
Phone2012508440PhoneNum
Signature2026-08-17SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJAMES M WOODPreparerPersonNm
PTINP00310420PTIN
Phone9084311700PhoneNum
Preparation2026-07-29PreparationDt
Self EmployedYes (X)SelfEmployedInd
FieldValueIRS element (for citing)
Tax2025TaxYr
Build TS2025-03-06 01:10:19ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerPATRICIA A FURLONGPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line11012 14TH STREET NW 500AddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20005ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$13,108,512GrossReceiptsAmt
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 Body13VotingMembersGoverningBodyCnt
Voting Members Independent13VotingMembersIndependentCnt
Total Employee28TotalEmployeeCnt
Total Volunteers550TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$10,008,956PYContributionsGrantsAmt
CY Contributions Grants$8,061,163CYContributionsGrantsAmt
PY Program Service Revenue$2,234,268PYProgramServiceRevenueAmt
CY Program Service Revenue$2,310,082CYProgramServiceRevenueAmt
PY Investment Income$150,586PYInvestmentIncomeAmt
CY Investment Income$174,692CYInvestmentIncomeAmt
PY Other Revenue$1,917,951PYOtherRevenueAmt
CY Other Revenue$1,503,509CYOtherRevenueAmt
PY Total Revenue$14,311,761PYTotalRevenueAmt
CY Total Revenue$12,049,446CYTotalRevenueAmt
PY Grants And Similar Paid$2,650,583PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$1,500,817CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$4,089,108PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$4,341,780CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$626,376CYTotalFundraisingExpenseAmt
PY Other Expenses$6,141,711PYOtherExpensesAmt
CY Other Expenses$6,053,356CYOtherExpensesAmt
PY Total Expenses$12,881,402PYTotalExpensesAmt
CY Total Expenses$11,895,953CYTotalExpensesAmt
PY Revenues Less Expenses$1,430,359PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$153,493CYRevenuesLessExpensesAmt
Total Assets BOY$12,567,424TotalAssetsBOYAmt
Total Assets EOY$12,713,304TotalAssetsEOYAmt
Total Liabilities BOY$1,109,314TotalLiabilitiesBOYAmt
Total Liabilities EOY$1,186,492TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$11,458,110NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$11,526,812NetAssetsOrFundBalancesEOYAmt
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$6,955,873ExpenseAmt
Grant$1,493,317GrantAmt
Revenue$3,932,180RevenueAmt
DescRESEARCHPPMD'S RESEARCH PROGRAM IDENTIFIES AND FUNDS THE MOST PROMISING NEAR- AND LONG-TERM THERAPEUTIC STRATEGIES FOR DUCHENNE AND BECKER MUSCULAR DYSTROPHY. WE INVEST ACROSS THE DEVELOPMENT PIPELINE-FROM BASIC SCIENCE TO CLINICAL APPLICATION-WHILE ACTIVELY STIMULATING NEW RESEARCH TO KEEP THE THERAPEUTIC PIPELINE ROBUST. THROUGH INITIATIVES LIKE THE DUCHENNE DRUG DEVELOPMENT ROUNDTABLE, WE FOSTER INDUSTRY COLLABORATION TO HARMONIZE THE CLINICAL TRIAL LANDSCAPE AND ACCELERATE PROGRESS.IN ADDITION TO FUNDING ACADEMIC AND PRE-CLINICAL RESEARCH, OUR VENTURE PATHWAYS PROGRAM INVESTS IN EARLY-STAGE BIOPHARMACEUTICAL COMPANIES TO DRIVE THE DEVELOPMENT OF NOVEL TREATMENTS FOR DUCHENNE AND BECKER MUSCULAR DYSTROPHY.THE DUCHENNE REGISTRYTHE DUCHENNE REGISTRY REMAINS THE LARGEST PATIENT-REPORTED REGISTRY FOR DUCHENNE, BECKER AND CARRIER FEMALES. OVER 6,000 PEOPLE FROM MORE THAN 125 COUNTRIES HAVE JOINED SINCE 2007, CONTRIBUTING OVER 18 YEARS OF DATA. REGISTRY DATA HAS BEEN EXPORTED FOR RESEARCHERS OVER 80 TIMES, AND THE REGISTRY HAS BEEN USED TO IDENTIFY AND CONNECT PEOPLE WITH DUCHENNE AND BECKER TO MORE THAN 100 CLINICAL TRIALS AND RESEARCH STUDIES. PPMD ALSO MANAGES COMPLEMENTARY INITIATIVES:THE INTERCHANGE PROVIDES A CENTRAL PATIENT-AND CLINICIAN REPORTED DATA WAREHOUSE SO ALL TYPES OF DUCHENNE DATA FROM VARIOUS SOURCES, INCLUDING THE DUCHENNE REGISTRY, ACADEMIC CONSORTIA, REAL-WORLD DATA FROM ELECTRONIC HEALTH RECORDS (EHRS), AND POST-MARKET STUDIES FROM INDUSTRY PARTNERS, ARE COLLECTED AND ANALYZED IN ONE PLACE. BY DE-SILOING DATA, THE INTERCHANGE DELIVERS A MORE COMPLETE PICTURE OF DUCHENNE AND BECKER AND HELPS CLINICAL RESEARCHERS AND PARTNERS IN THERAPY DEVELOPMENT ADDRESS COMMON RESEARCH CHALLENGES. THUS, RESEARCHERS CAN EFFECTIVELY CONDUCT THEIR WORK AND ACCELERATE SCIENTIFIC DISCOVERY AND PATIENT ACCESS TO NEW THERAPIES.CAREPPMD'S CARE PROGRAM ENSURES INDIVIDUALS WITH DUCHENNE HAVE ACCESS TO EXPERT CLINICAL TEAMS, APPROVED THERAPIES, AND COMPREHENSIVE MULTIDISCIPLINARY CARE ACROSS THEIR LIFESPAN. WE IDENTIFY GAPS IN CARE AND WORK COLLABORATIVELY WITH GLOBAL HEALTHCARE PROVIDERS TO CLOSE THOSE GAPS AND IMPROVE OUTCOMES.OUR CERTIFIED DUCHENNE CARE CENTER (CDCC) PROGRAM CERTIFIES CARE CENTERS THAT MEET RIGOROUS STANDARDS ALIGNED WITH THE DUCHENNE CARE GUIDELINES. THESE CENTERS COMMIT TO DELIVERING CONSISTENT, HIGH-QUALITY CARE BASED ON BEST PRACTICES.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$2,438,077ExpenseAmt
Grant$7,500GrantAmt
DescEDUCATIONPPMD'S EDUCATION INITIATIVES EQUIP FAMILIES, HEALTHCARE PROVIDERS, AND THE BROADER COMMUNITY WITH THE INFORMATION NEEDED TO NAVIGATE DUCHENNE CARE ACROSS ALL STAGES OF THE DISORDER. WE PARTNER WITH CLINICAL AND SCIENTIFIC EXPERTS TO DEVELOP ACCURATE, ACCESSIBLE RESOURCES AND SHARE THEM BROADLY. WE ALSO COLLABORATE WITH DOMESTIC AND INTERNATIONAL ORGANIZATIONS TO ENSURE EDUCATIONAL MATERIALS REACH GLOBAL AUDIENCES.ENGAGEMENTPPMD FOSTERS A STRONG, INFORMED, AND CONNECTED COMMUNITY. EACH SUMMER, WE HOST THE WORLD'S LARGEST DUCHENNE CONFERENCE, BRINGING TOGETHER FAMILIES, CLINICIANS, RESEARCHERS, AND INDUSTRY PARTNERS TO SHARE UPDATES AND BUILD CONNECTIONS.THROUGHOUT THE YEAR, WE OFFER VIRTUAL AND IN-PERSON GATHERINGS FOR SUBGROUPS INCLUDING DUCHENNE CARRIERS, SIBLINGS, DADS, GRANDPARENTS, AND NEWLY DIAGNOSED FAMILIES.THROUGH PPMD TOGETHER, WE ALSO PROVIDE PERSONALIZED ONE-ON-ONE VIRTUAL SUPPORT TO HELP FAMILIES NAVIGATE THEIR INDIVIDUAL CHALLENGES.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$1,041,438ExpenseAmt
DescADVOCACYPPMD LEADS FEDERAL AND STATE-LEVEL ADVOCACY TO IMPROVE ACCESS TO CARE, ACCELERATE THERAPEUTIC DEVELOPMENT, AND ENSURE REGULATORY FRAMEWORKS SUPPORT THE DUCHENNE COMMUNITY. WE PROVIDE ADVOCATES WITH THE TOOLS AND INFORMATION NEEDED TO ENGAGE POLICYMAKERS AND BUILD CONGRESSIONAL CHAMPIONS.WE ALSO SPEARHEAD EFFORTS TO EXPAND NEWBORN SCREENING FOR DUCHENNE, ENSURING EARLY DIAGNOSIS AND ACCESS TO INTERVENTIONS.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$10,435,388TotalProgramServiceExpensesAmt
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 SecYes (1)ReportInvestmentsOtherSecInd
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 ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
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 Document30IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee28EmployeeCnt
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 Members13GoverningBodyVotingMembersCnt
Independent Voting Member13IndependentVotingMemberCnt
Family Or Business RlnYes (1)FamilyOrBusinessRlnInd
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 FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldHIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNMStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldRIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
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 STREET NW 500AddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20005ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (19 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeInd
JOHN KILLIAN
CHAIR8.00Yes (X)Yes (X)$0$0$0
ALPA KHUSHALANI
VICE CHAIR6.00Yes (X)Yes (X)$0$0$0
DAWN REZKALLA
TREASURER6.00Yes (X)Yes (X)$0$0$0
DEANNE FRIAR
SECRETARY6.00Yes (X)Yes (X)$0$0$0
COLIN RENSCH
DIRECTOR2.00Yes (X)$0$0$0
MICHELLE FURLONG
DIRECTOR2.00Yes (X)$0$0$0
SCOTT PERRIN PHD
DIRECTOR2.00Yes (X)$0$0$0
MARU CHAPUR
DIRECTOR2.00Yes (X)$0$0$0
SUSAN HUANG
DIRECTOR2.00Yes (X)$0$0$0
SUSAN APKON
DIRECTOR2.00Yes (X)$0$0$0
TIM CRIPE MD PHD
DIRECTOR2.00Yes (X)$0$0$0
LINDA CRIPE MD
EMERITUS2.00Yes (X)$0$0$0
DAVID HOFSTEIN JD
EMERITUS2.00Yes (X)$0$0$0
PATRICIA A FURLONG
PRESIDENT AND CEO40.00Yes (X)$391,500$0$14,365
KAYLAN MOITOSO
CHIEF BUSINESS OFFICER40.00$316,440$0$10,996Yes (X)
MEGAN FREED
CHIEF OF STRATEGIC INITIATIVES40.00$209,234$0$18,370Yes (X)
ANN MARTIN
VICE PRESIDENT, COMMUNITY RESEARCH & GENETIC SVCS.40.00$186,369$0$22,346Yes (X)
RACHEL SCHRADER
VICE PRESIDENT, CLINICAL CARE & EDUCATION40.00$177,589$0$9,069Yes (X)
KIMBERLY GALBERAITH
PRINCIPAL CREATIVE DIRECTOR40.00$190,487$0$22,725Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$1,471,619TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$97,871TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K16IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (4 entries)

Address Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCdServicesServicesDescCompensationCompensationAmt
FAEGRE DRINKER BIDDLE & REATH LLP
75 REMITTANCE DRIVE DEPT 6952CHICAGOIL60675LEGAL AND REGULATORY CONSULTING$361,007
PROMETHEUS RESEARCH
4820 EMPEROR BLVDDURHAMNC27703DATA TECHNOLOGY$247,145
YOUR PART TIME CONTROLLER
1600 MARKET STREET SUITE 3425PHILADELPHIAPA19103ACCOUNTING$138,635
EZE CASTLE
55 COURT ST SUITE 520BOSTONMA02108IT SERVICES$125,590
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K4CntrctRcvdGreaterThan100KCnt
Fundraising$3,207,704FundraisingAmt
All Other Contributions$4,853,459AllOtherContributionsAmt
Total Contributions$8,061,163TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (3 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
OTHER MEETINGS AND CONFERENCES900099$952,608$952,608
CONFERENCE INCOME900099$806,840$806,840
PROGRAM SERVICE REVENUE900099$550,634$550,634
FieldValueIRS element (for citing)
Total Program Service Revenue$2,310,082TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$175,893TotalRevenueColumnAmt
Exclusion$175,893ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$715,514SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$716,715SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$1,201SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$1,201TotalRevenueColumnAmt
Related Or Exempt Func Income-$1,201RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$222,561FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$3,207,704ContriRptFundraisingEventAmt
Fundraising Direct Expenses$342,351FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$119,790TotalRevenueColumnAmt
Exclusion-$119,790ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp (3 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
REVENUE SHARING900099$1,594,356$1,594,356
OTHER900099$15,803$15,803
RECOVERY OF PREVIOUSLY AWARDED GR900099$13,707$13,707

Miscellaneous Revenue MiscellaneousRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column-$567TotalRevenueColumnAmt
Related Or Exempt Func Income-$567RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total$1,623,299OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$12,049,446TotalRevenueColumnAmt
Related Or Exempt Func Income$3,932,180RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$56,103ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$1,344,321TotalAmt
Program Services$1,344,321ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$156,496TotalAmt
Program Services$156,496ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$391,500TotalAmt
Program Services$332,775ProgramServicesAmt
Management And General$19,575ManagementAndGeneralAmt
Fundraising$39,150FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$3,237,043TotalAmt
Program Services$2,764,416ProgramServicesAmt
Management And General$212,177ManagementAndGeneralAmt
Fundraising$260,450FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$151,926TotalAmt
Program Services$123,531ProgramServicesAmt
Management And General$16,119ManagementAndGeneralAmt
Fundraising$12,276FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$308,187TotalAmt
Program Services$250,560ProgramServicesAmt
Management And General$32,669ManagementAndGeneralAmt
Fundraising$24,958FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$253,124TotalAmt
Program Services$205,816ProgramServicesAmt
Management And General$26,856ManagementAndGeneralAmt
Fundraising$20,452FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$120,808TotalAmt
Program Services$104,738ProgramServicesAmt
Management And General$10,335ManagementAndGeneralAmt
Fundraising$5,735FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$24,000TotalAmt
Management And General$24,000ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$1,254,470TotalAmt
Program Services$968,076ProgramServicesAmt
Management And General$260,681ManagementAndGeneralAmt
Fundraising$25,713FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$38,539TotalAmt
Program Services$38,422ProgramServicesAmt
Fundraising$117FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$7,904TotalAmt
Program Services$1,110ProgramServicesAmt
Management And General$6,317ManagementAndGeneralAmt
Fundraising$477FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$67,586TotalAmt
Program Services$59,886ProgramServicesAmt
Management And General$7,700ManagementAndGeneralAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$183,107TotalAmt
Program Services$183,107ProgramServicesAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$8,117TotalAmt
Program Services$7,116ProgramServicesAmt
Management And General$575ManagementAndGeneralAmt
Fundraising$426FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$21,032TotalAmt
Program Services$15,194ProgramServicesAmt
Management And General$4,449ManagementAndGeneralAmt
Fundraising$1,389FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
ANNUAL CONFERENCE$1,390,799$1,390,799$0$0
PROGRAM SUPPLIES$662,753$662,753$0$0
MEALS$592,219$586,150$5,199$870
TRAVEL$515,250$458,173$26,210$30,867

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$1,166,772TotalAmt
Program Services$781,949ProgramServicesAmt
Management And General$181,327ManagementAndGeneralAmt
Fundraising$203,496FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$11,895,953TotalAmt
Program Services$10,435,388ProgramServicesAmt
Management And General$834,189ManagementAndGeneralAmt
Fundraising$626,376FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$5,201,236BOYAmt
EOY$5,041,500EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$1,500,774BOYAmt
EOY$1,501,070EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$940,770BOYAmt
EOY$1,284,622EOYAmt

Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp

FieldValueIRS element (for citing)
BOY$550,137BOYAmt
EOY$814,026EOYAmt

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

FieldValueIRS element (for citing)
BOY$87,886BOYAmt
EOY$100,321EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$474,736BOYAmt
EOY$322,705EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$57,034LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$51,451LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$14,267BOYAmt
EOY$5,583EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$505,462BOYAmt
EOY$419,791EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
BOY$2,357,590BOYAmt
EOY$2,247,625EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

FieldValueIRS element (for citing)
BOY$850,479BOYAmt
EOY$850,479EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$84,087BOYAmt
EOY$125,582EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$12,567,424BOYAmt
EOY$12,713,304EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$458,828BOYAmt
EOY$576,122EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$556,646BOYAmt
EOY$75,000EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$17,450BOYAmt
EOY$464,448EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$76,390BOYAmt
EOY$70,922EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,109,314BOYAmt
EOY$1,186,492EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$9,034,708BOYAmt
EOY$9,746,314EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$2,423,402BOYAmt
EOY$1,780,498EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$11,458,110BOYAmt
EOY$11,526,812EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$12,567,424BOYAmt
EOY$12,713,304EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$153,493ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$84,791NetUnrlzdGainsLossesInvstAmt
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$9,127,402CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$9,959,415CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$12,802,680CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$10,008,956CurrentTaxYearMinus1YearAmt
Current Tax Year$8,061,163CurrentTaxYearAmt
Total$49,959,616TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$9,127,402CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$9,959,415CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$12,802,680CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$10,008,956CurrentTaxYearMinus1YearAmt
Current Tax Year$8,061,163CurrentTaxYearAmt
Total$49,959,616TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$17,715,560SubstantialContributorsTotAmt
Public Support Total170$32,244,056PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$49,538CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$9,584CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$88,182CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$149,903CurrentTaxYearMinus1YearAmt
Current Tax Year$175,893CurrentTaxYearAmt
Total$473,100TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$329,826CurrentTaxYearMinus4YearsAmt
Total$329,826TotalAmt
FieldValueIRS element (for citing)
Total Support$50,762,542TotalSupportAmt
Gross Receipts Rltd Activities$7,039,783GrossReceiptsRltdActivitiesAmt
Public Support CY1700.63520PublicSupportCY170Pct
Public Support PY1700.62800PublicSupportPY170Pct
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$20,622FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$120,000FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$140,622FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$11,755,331FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$11,895,953FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$744,798FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$186,200FilingOrganizationsTotalAmt

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$701,882CurrentYearMinus3Amt
Current Year Minus2$755,624CurrentYearMinus2Amt
Current Year Minus1$794,070CurrentYearMinus1Amt
Current Year$744,798CurrentYearAmt
Total$2,996,374TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$4,494,561LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$107,134CurrentYearMinus3Amt
Current Year Minus2$110,148CurrentYearMinus2Amt
Current Year Minus1$88,121CurrentYearMinus1Amt
Current Year$140,622CurrentYearAmt
Total$446,025TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$175,471CurrentYearMinus3Amt
Current Year Minus2$188,906CurrentYearMinus2Amt
Current Year Minus1$198,518CurrentYearMinus1Amt
Current Year$186,200CurrentYearAmt
Total$749,095TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$1,123,643GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$27,134CurrentYearMinus3Amt
Current Year Minus2$30,148CurrentYearMinus2Amt
Current Year Minus1$18,121CurrentYearMinus1Amt
Current Year$20,622CurrentYearAmt
Total$96,025TotalAmt

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$57,034OtherCostOrOtherBasisAmt
Depreciation$51,451DepreciationAmt
Book Value$5,583BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$5,583TotalBookValueLandBuildingsAmt

Other Securities OtherSecuritiesGrp (2 entries)

DescDescBook ValueBookValueAmtMethod ValuationMethodValuationCd
REAL ESTATE INVESTMENT TRUST$280,676F
U.S. TREASURY BONDS$1,966,949F
FieldValueIRS element (for citing)
Total Book Value Securities$2,247,625TotalBookValueSecuritiesAmt

Invst Program Related Org InvstProgramRelatedOrgGrp

FieldValueIRS element (for citing)
DescAGREEMENT FOR FUTURE EQUITYDesc
Book Value$850,479BookValueAmt
Method ValuationCMethodValuationCd
FieldValueIRS element (for citing)
Total Book Value Program Rltd$850,479TotalBookValueProgramRltdAmt

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescOPERATING LEASE LIABILITIESDesc
Amt$70,922Amt
FieldValueIRS element (for citing)
Total Liability$70,922TotalLiabilityAmt
Total Rev Etc Audited Fincl Stmt$11,964,655TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst-$84,791NetUnrealizedGainsInvstAmt
Revenue Not Reported-$84,791RevenueNotReportedAmt
Revenue Subtotal$12,049,446RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$12,049,446TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$11,895,953TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$11,895,953ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$11,895,953TotalExpensesPerForm990Amt

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records Maintained0GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)

RegionRegionTxtOfficesOfficesCntEmployeeEmployeeCntType Of Activities ConductedTypeOfActivitiesConductedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES00GRANTS TO RECIPIENTS LOCATED IN REGION$111,538
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM00GRANTS TO RECIPIENTS LOCATED IN REGION$43,311
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$154,849SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$154,849TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (4 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtNon Cash AssistanceNonCashAssistanceAmt
NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATESCARE FELLOWSHIP$20,000WIRE TRANSFER$0
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMRESEARCH - BRAIN PROJECT$27,590WIRE TRANSFER$0
EUROPE (INCLUDING ICELAND & GREENLAND)RESEARCH - MEETING SUPPORT$17,721WIRE TRANSFER$0
NORTH AMERICARESEARCH- JENSEN SPECIFIC$91,538$0
FieldValueIRS element (for citing)
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1SAM'S NIGHTEvent1Nm
Gross Receipts Event1$1,802,728GrossReceiptsEvent1Amt
Charitable Contri Event1$1,802,728CharitableContriEvent1Amt
Other Direct Expenses Event1$11,610OtherDirectExpensesEvent1Amt
Event2WALT DISNEY WORLD EVENTEvent2Nm
Gross Receipts Event2$355,173GrossReceiptsEvent2Amt
Charitable Contri Event2$345,215CharitableContriEvent2Amt
Gross Revenue Event2$9,958GrossRevenueEvent2Amt
Other Direct Expenses Event2$113,032OtherDirectExpensesEvent2Amt
Other Events Total33OtherEventsTotalCnt
Gross Receipts Other Events$1,272,364GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$1,059,761CharitableContriOtherEventsAmt
Gross Revenue Other Events$212,603GrossRevenueOtherEventsAmt
Oth Direct Expnss Other Events$217,709OthDirectExpnssOtherEventsAmt
Gross Receipts Total$3,430,265GrossReceiptsTotalAmt
Charitable Contributions Tot$3,207,704CharitableContributionsTotAmt
Gross Revenue Total Events$222,561GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$342,351OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$342,351DirectExpenseSummaryEventsAmt
Net Income Summary-$119,790NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (22 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxtAddress Line2USAddress/AddressLine2Txt
ANALYSIS GROUPCTAP
111 HUNTINGTON AVE 14TH FLOORBOSTONMA02199042727260C CORPORATION$50,000$0RESEARCH- SUPPORT OF COLLECTIVE ANALYSIS TRAJECTORY PROJECT
ARKANSAS CHILDREN'S HOSPITAL
13 CHILDRENS WAYLITTLE ROCKAR72202710694931501(C)(3)$7,500$0RESEARCH- DORI EHR PROGRAM
CHILDREN'S NATIONAL MEDICAL CENTER
111 MICHIGAN AVE NWWASHINGTONDC20010521654453501(C)(3)$32,740$0RESEARCH- DORI EHR PROGRAM
CRITICAL PATH
1730 E RIVER ROAD SUITE 200TUCSONAZ85718201991334501(C)(3)$100,000$0RESEARCH- SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM
DUKE UNIVERSITY
PO BOX 104132DURHAMNC27708560532129501(C)(3)$29,039$0RESEARCH- DORI EHR PROGRAM
THE GENERAL HOSPITAL CORP DBS MASSACHUSETTS GENERAL HOSPITAL
55 FRUIT STBOSTONMA02114042697983501(C)(3)$100,000$0RESEARCH- FELLOWSHIP
NATIONWIDE CHILDREN'S HOSPITAL
700 CHILDRENS DRCOLUMBUSOH43205316056230501(C)(3)$60,000$0RESEARCH- MEETING SUPPORT
NORTHWESTERN UNIVERSITY
633 CLARK ROOM G-547EVANSTONIL60208362167817501(C)(3)$93,597$0RESEARCH- WELLSTONE SUPPLEMENT
OHIO STATE UNIVERSITY
1960 KENNY ROADCOLUMBUSOH43210316025986$134,961$0RESEARCH- PATIENT PREFERENCE
THE RESEARCH FOUNDATION FOR SUNY
PO BOX 9ALBANYNY12201141368361501(C)(3)$15,000$0RESEARCH- GENE THERAPY
UNIVERSITY OF COLORADO AT DENVER
MAIL STOP F428 BLDG 500 13001 EAURORACO80045846000555$12,500$0RESEARCH- DORI EHR PROGRAM17TH PL
UNIVERSITY OF FLORIDA BOARD OF TRUSTEES
219 GRINTER HALLGAINESVILLEFL32611596002052501(C)(3)$199,875$0RESEARCH- WELLSTONE SUPPLEMENT
UNIVERSITY OF FLORIDA BOARD OF TRUSTEES
219 GRINTER HALLGAINESVILLEFL32611596002052501(C)(3)$65,000$0RESEARCH- BIOMARKER
UNIVERSITY OF FLORIDA FOUNDATION
1200 NEWELL DRIVE ARB R5-2GAINESVILLEFL32610590974739501(C)(3)$300,000$0RESEARCH- PRECLINICAL THERAPEUTIC ASSESSMENT LAB
REGENTS OF UNIVERSITY OF MINNESOTA
2221 UNIVERSITY AVE SE STE 100MINNEAPOLISMN55414416007513$25,000$0RESEARCH- CLINICAL TRIALS
UNIVERSITY OF ROCHESTER MEDICAL CENTER
601 ELMWOOD AVE PO BOX 673ROCHESTERNY14642160743209$25,000$0RESEARCH- NEWBORN SCREENING
UNIVERSITY OF UTAH
201 S PRESIDENTS CIRCLE RM 159SALT LAKE CITYUT84112876000525501(C)(3)$25,000$0RESEARCH- DORI EHR PROGRAM
UT SOUTHWESTERN MED
5323 HARRY HINES BLVD MC 9029DALLASTX75390756002868$25,000$0RESEARCH- DORI EHR PROGRAM
VANDERBILT (DR JONATHAN SOSLOW)
1211 MEDICAL CENTER DRNASHVILLETN37232352528741501(C)(3)$10,000$0RESEARCH- CARDIAC INITIATIVE
VANDERBILT
1211 MEDICAL CENTER DRNASHVILLETN37232352528741501(C)(3)$10,000$0RESEARCH- NEWBORN SCREENING
VIRGINIA TECH FOUNDATION
220 GILBERT STRBLACKSBURGVA24061540721690501(C)(3)$7,500$0RESEARCH- ROBOTICS
YALE UNIVERSITY
PO BOX 1873NEW HAVENCT06508060646973C CORPORATION$25,161$0RESEARCH- DORI EHR PROGRAM

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
PRESIDENT AND CEO$362,500$0$29,000$0$0$0$14,333$0$32$0$405,865$0$0$0
KAYLAN MOITOSO
CHIEF BUSINESS OFFICER$293,000$0$23,440$0$0$0$10,867$0$129$0$327,436$0$0$0
MEGAN FREED
CHIEF OF STRATEGIC INITIATIVES$205,134$0$4,100$0$0$0$6,927$0$11,443$0$227,604$0$0$0
KIMBERLY GALBERAITH
PRINCIPAL CREATIVE DIRECTOR$179,714$0$10,773$0$0$0$8,965$0$13,760$0$213,212$0$0$0
ANN MARTIN
VICE PRESIDENT, COMMUNITY RESEARCH &$172,569$0$13,800$0$0$0$9,380$0$12,966$0$208,715$0$0$0
RACHEL SCHRADER
VICE PRESIDENT, CLINICAL CARE & EDUC$167,539$0$10,050$0$0$0$8,940$0$129$0$186,658$0$0$0

Schedule M IRS990ScheduleM

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution6ContributionCnt
Noncash Contributions Rpt F990$586,819NoncashContributionsRptF990Amt
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 (8 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION A, LINE 2MICHELLE FURLONG - DIRECTOR IS THE DAUGHTER OF PATRICIA FURLONG CEO, OFFICER
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 11GCONSULTING EXPENSE: PROGRAM SERVICE EXPENSES 968,076. MANAGEMENT AND GENERAL EXPENSES 260,681. FUNDRAISING EXPENSES 25,713. TOTAL EXPENSES 1,254,470.
FORM 990, PART XII, LINE 2CTHE PROCESS HAS NOT CHANGED FROM PRIOR YEAR.

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