THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC: Form 990, tax year 2022
View the entire original 990 at ProPublica ↗
- Organization
- THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC (EIN 31-1405490)
- Tax period
- 2022-01-01 to 2022-12-31
- Filed
- 2023-08-07
- IRS object ID
- 202312199349301496
- Schema version
- 2022v5.0
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule J
- Schedule M
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2023-08-07T15:52:18-05:00 | ReturnTs |
| Tax Period End | 2022-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 223604710 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | JAMES M WOOD CPA | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 603B OMNI DRIVE | AddressLine1Txt |
| City | HILLSBOROUGH | CityNm |
| State Abbreviation | NJ | StateAbbreviationCd |
| ZIP | 08844 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2022-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 311405490 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | THE PARENT PROJECT FOR MUSCULAR | BusinessNameLine1Txt |
| Business Name Line2 | DYSTROPHY RESEARCH INC | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | PARE | BusinessNameControlTxt |
| Phone | 2012508440 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1012 14TH STREET NW 500 | AddressLine1Txt |
| City | WASHINGTON | CityNm |
| State Abbreviation | DC | StateAbbreviationCd |
| ZIP | 20005 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | PATRICIA A FURLONG | PersonNm |
| Person Title | FOUNDING PRESIDENT/CEO | PersonTitleTxt |
| Phone | 2012508440 | PhoneNum |
| Signature | 2023-08-07 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Signing Officer SigningOfficerGrp
Person Full Name PersonFullName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person First | PATRICIA | PersonFirstNm |
| Person Last | FURLONG | PersonLastNm |
| Field | Value | IRS element (for citing) |
|---|---|---|
| SSN | 999009999 | SSN |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IRS Responsible Prty Info Curr | 0 | IRSResponsiblePrtyInfoCurrInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | JAMES M WOOD | PreparerPersonNm |
| PTIN | P00310420 | PTIN |
| Phone | 9084311700 | PhoneNum |
| Preparation | 2023-08-01 | PreparationDt |
| Self Employed | Yes (X) | SelfEmployedInd |
Additional Filer Information AdditionalFilerInformation
Trusted Customer TrustedCustomerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Trusted Customer | 2 | TrustedCustomerCd |
| Authentication Assurance Level | AAL1 | AuthenticationAssuranceLevelCd |
| Identity Assurance Level | IAL1 | IdentityAssuranceLevelCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2022 | TaxYr |
| Build TS | 2023-04-26 12:10:37Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | PATRICIA A FURLONG | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1012 14TH STREET NW 500 | AddressLine1Txt |
| City | WASHINGTON | CityNm |
| State Abbreviation | DC | StateAbbreviationCd |
| ZIP | 20005 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $11,975,273 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.PARENTPROJECTMD.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1997 | FormationYr |
| Legal Domicile State | OH | LegalDomicileStateCd |
| Activity Or Mission | END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE. | ActivityOrMissionDesc |
| Voting Members Governing Body | 12 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 12 | VotingMembersIndependentCnt |
| Total Employee | 25 | TotalEmployeeCnt |
| Total Volunteers | 500 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $10,454,728 | PYContributionsGrantsAmt |
| CY Contributions Grants | $9,959,415 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $485,989 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $798,475 | CYProgramServiceRevenueAmt |
| PY Investment Income | $53,606 | PYInvestmentIncomeAmt |
| CY Investment Income | $41,696 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$137,765 | PYOtherRevenueAmt |
| CY Other Revenue | -$46,572 | CYOtherRevenueAmt |
| PY Total Revenue | $10,856,558 | PYTotalRevenueAmt |
| CY Total Revenue | $10,753,014 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $2,509,187 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $2,629,658 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $2,350,713 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $3,241,316 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $546,628 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $2,983,464 | PYOtherExpensesAmt |
| CY Other Expenses | $5,166,667 | CYOtherExpensesAmt |
| PY Total Expenses | $7,843,364 | PYTotalExpensesAmt |
| CY Total Expenses | $11,037,641 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $3,013,194 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$284,627 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $10,203,860 | TotalAssetsBOYAmt |
| Total Assets EOY | $8,648,654 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $1,504,388 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $768,416 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $8,699,472 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $7,880,238 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | THE PARENT PROJECT MUSCULAR DYSTROPHY (PPMD) FIGHTS TO END DUCHENNE. WE ACCELERATE RESEARCH, RAISE OUR VOICES TO IMPACT POLICY, DEMAND OPTIMAL CARE FOR EVERY SINGLE FAMILY, AND STRIVE TO ENSURE ACCESS TO APPROVED THERAPIES. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $6,532,965 | ExpenseAmt |
| Grant | $2,629,658 | GrantAmt |
| Revenue | $1,006,187 | RevenueAmt |
| Desc | RESEARCHPPMD'S RESEARCH PROGRAM IDENTIFIES AND AGGRESSIVELY FUNDS THE MOST PROMISING NEAR AND LONG-TERM DUCHENNE RESEARCH ACROSS NUMEROUS THERAPEUTIC STRATEGIES; 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 PPMD 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 TO EXPERT HEALTHCARE PROVIDERS, A COMPREHENSIVE TEAM OF SUB-SPECIALISTS, AND APPROVED 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 (CDCC) 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, STANDARDIZED CARE AND SERVICES. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $2,168,132 | ExpenseAmt |
| Desc | EDUCATIONPPMD'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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $910,780 | ExpenseAmt |
| Desc | ADVOCACYPPMD'S ADVOCACY EFFORTS ARE FOCUSED ON ADVANCING CARE AND TREATMENTS FOR DUCHENNE BY LEVERAGING FEDERAL RESOURCES, BUILDING PARTNERSHIPS, AND ADVANCING 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 SUPPORT LEGISLATION AND REGULATORY POLICIES, ENSURING THAT DUCHENNE PRIORITIES ARE REFLECTED ACROSS ALL GOVERNMENT AGENCIES. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $9,611,877 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | 0 | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | Yes (1) | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | Yes (1) | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 33 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 25 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | 0 | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 12 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 12 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | 0 | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | THE ORGANIZATION | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 2012508440 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1012 14TH STREET NW 500 | AddressLine1Txt |
| City | WASHINGTON | CityNm |
| State Abbreviation | DC | StateAbbreviationCd |
| ZIP | 20005 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (17 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|
| ANESSA FEHSENFELD | |||||||
| BOARD CHAIRMAN | 8.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| GRETCHEN EGNER | |||||||
| VICE CHAIR | 8.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| LANCE HESTER | |||||||
| TREASURER | 6.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| DEANNE FRIAR | |||||||
| SECRETARY | 6.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| DAVID N HOFSTEIN | |||||||
| EXECUTIVE OVERSIGHT CHAIR | 6.00 | Yes (X) | $0 | $0 | $0 | ||
| RASHA ALNAIBARI | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| JEFF BIGELOW | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| LINDA CRIPE | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| CHRISTOPHER JONES | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| RICHARD KLEIN | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| COLIN RENSCH | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| BETH WHITE | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| PATRICIA A FURLONG | |||||||
| PRESIDENT AND CEO | 40.00 | Yes (X) | $292,250 | $0 | $12,648 | ||
| RYAN FISCHER | |||||||
| CHIEF ADVOCACY OFFICER | 40.00 | $187,206 | $0 | $14,500 | Yes (X) | ||
| KAYLAN MOITOSO | |||||||
| CHIEF BUSINESS OFFICER | 40.00 | $184,600 | $0 | $9,443 | Yes (X) | ||
| RACHEL SCHRADER | |||||||
| VICE PRESIDENT, CLINICAL CARE AND EDUCATION | 40.00 | $153,280 | $0 | $15,124 | Yes (X) | ||
| ANN MARTIN | |||||||
| VP, COMM RESEARCH AND GENETIC SERVICES | 40.00 | $151,910 | $0 | $7,088 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $969,246 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $58,803 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 13 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (5 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| THE PHOENICIAN RESORT | |||||
| 6000 EAST CAMELBACK ROAD | SCOTTSDALE | AZ | 85251 | ANNUAL CONFERENCE VENUE | $968,428 |
| SOMALOGIC INC | |||||
| 2945 WILDERNESS PLACE | BOULDER | CO | 80301 | BIOMARKER INITIATIVE | $472,550 |
| FAEGRE DRINKER BIDDIE & REATH LLP | |||||
| 75 REMITTANCE DRIVE | CHICAGO | IL | 60675 | REGULATORY CONSULTING FEES | $260,564 |
| ALL COLORS LLC | |||||
| 176 WOODBRIDGE AVE | HIGHLAND PARK | NJ | 08904 | SUPPLIES, PRINTING & STORAGE | $242,611 |
| PROMETHEUS RESEARCH LLC | |||||
| 4820 EMPEROR BOULEVARD | DURHAM | NC | 27703 | DATABASE/INFORMATION TECHNOLOGY SERVICES | $220,409 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 12 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $2,923,010 | FundraisingAmt |
| Government Grants | $425,852 | GovernmentGrantsAmt |
| All Other Contributions | $6,610,553 | AllOtherContributionsAmt |
| Total Contributions | $9,959,415 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| CONFERENCE INCOME | 900099 | $483,304 | $483,304 |
| FEES FOR SERVICE | 900099 | $315,171 | $315,171 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $798,475 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $9,584 | TotalRevenueColumnAmt |
| Exclusion | $9,584 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $1,032,199 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $1,000,087 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $32,112 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $32,112 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $32,112 | RelatedOrExemptFuncIncomeAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $0 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $2,923,010 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $222,172 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$222,172 | TotalRevenueColumnAmt |
| Exclusion | -$222,172 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | RECOVERY OF PREVIOUSLY AWARDED GR | Desc |
| Business | 900099 | BusinessCd |
| Total Revenue Column | $175,600 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $175,600 | RelatedOrExemptFuncIncomeAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $175,600 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $10,753,014 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $1,006,187 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$212,588 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,538,809 | TotalAmt |
| Program Services | $2,538,809 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $90,849 | TotalAmt |
| Program Services | $90,849 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $296,765 | TotalAmt |
| Program Services | $252,250 | ProgramServicesAmt |
| Management And General | $14,838 | ManagementAndGeneralAmt |
| Fundraising | $29,677 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,434,480 | TotalAmt |
| Program Services | $2,097,673 | ProgramServicesAmt |
| Management And General | $106,536 | ManagementAndGeneralAmt |
| Fundraising | $230,271 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $120,484 | TotalAmt |
| Program Services | $103,664 | ProgramServicesAmt |
| Management And General | $5,350 | ManagementAndGeneralAmt |
| Fundraising | $11,470 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $195,298 | TotalAmt |
| Program Services | $168,027 | ProgramServicesAmt |
| Management And General | $8,690 | ManagementAndGeneralAmt |
| Fundraising | $18,581 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $194,289 | TotalAmt |
| Program Services | $167,166 | ProgramServicesAmt |
| Management And General | $8,627 | ManagementAndGeneralAmt |
| Fundraising | $18,496 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $229,806 | TotalAmt |
| Program Services | $47,210 | ProgramServicesAmt |
| Management And General | $182,596 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $19,009 | TotalAmt |
| Management And General | $19,009 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $926,644 | TotalAmt |
| Program Services | $685,306 | ProgramServicesAmt |
| Management And General | $213,076 | ManagementAndGeneralAmt |
| Fundraising | $28,262 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $17,363 | TotalAmt |
| Program Services | $16,807 | ProgramServicesAmt |
| Fundraising | $556 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $54,155 | TotalAmt |
| Program Services | $35,280 | ProgramServicesAmt |
| Management And General | $11,028 | ManagementAndGeneralAmt |
| Fundraising | $7,847 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $88,893 | TotalAmt |
| Program Services | $77,760 | ProgramServicesAmt |
| Management And General | $8,402 | ManagementAndGeneralAmt |
| Fundraising | $2,731 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $531,479 | TotalAmt |
| Program Services | $499,967 | ProgramServicesAmt |
| Management And General | $10,063 | ManagementAndGeneralAmt |
| Fundraising | $21,449 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $432,862 | TotalAmt |
| Program Services | $417,650 | ProgramServicesAmt |
| Management And General | $15,212 | ManagementAndGeneralAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $13,698 | TotalAmt |
| Program Services | $11,785 | ProgramServicesAmt |
| Management And General | $609 | ManagementAndGeneralAmt |
| Fundraising | $1,304 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $16,147 | TotalAmt |
| Program Services | $10,295 | ProgramServicesAmt |
| Management And General | $4,412 | ManagementAndGeneralAmt |
| Fundraising | $1,440 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| PROGRAM SUPPLIES | $1,254,124 | $1,254,124 | $0 | $0 |
| MEALS | $579,008 | $571,545 | $4,145 | $3,318 |
| TECHNOLOGY | $398,103 | $130,647 | $150,840 | $116,616 |
| A/V AND PRODUCTION | $341,320 | $341,320 | $0 | $0 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $264,056 | TotalAmt |
| Program Services | $93,743 | ProgramServicesAmt |
| Management And General | $115,703 | ManagementAndGeneralAmt |
| Fundraising | $54,610 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,037,641 | TotalAmt |
| Program Services | $9,611,877 | ProgramServicesAmt |
| Management And General | $879,136 | ManagementAndGeneralAmt |
| Fundraising | $546,628 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,257,144 | BOYAmt |
| EOY | $1,694,546 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,523,580 | BOYAmt |
| EOY | $1,500,181 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $830,789 | BOYAmt |
| EOY | $1,782,425 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $52,041 | BOYAmt |
| EOY | $87,750 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $217,861 | BOYAmt |
| EOY | $197,973 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $104,025 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $77,550 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $27,206 | BOYAmt |
| EOY | $26,475 | EOYAmt |
Investments Other Securities InvestmentsOtherSecuritiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $250,000 | BOYAmt |
| EOY | $2,210,501 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,027,774 | BOYAmt |
| EOY | $989,377 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $17,465 | BOYAmt |
| EOY | $159,426 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $10,203,860 | BOYAmt |
| EOY | $8,648,654 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $396,783 | BOYAmt |
| EOY | $463,474 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $531,753 | BOYAmt |
| EOY | $62,917 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $575,852 | BOYAmt |
| EOY | $242,025 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,504,388 | BOYAmt |
| EOY | $768,416 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,899,231 | BOYAmt |
| EOY | $6,152,121 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $800,241 | BOYAmt |
| EOY | $1,728,117 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,699,472 | BOYAmt |
| EOY | $7,880,238 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $10,203,860 | BOYAmt |
| EOY | $8,648,654 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$284,627 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | -$534,607 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $9,010,932 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $11,062,420 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $8,889,998 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $9,127,402 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $9,959,415 | CurrentTaxYearAmt |
| Total | $48,050,167 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $9,010,932 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $11,062,420 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $8,889,998 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $9,127,402 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $9,959,415 | CurrentTaxYearAmt |
| Total | $48,050,167 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $17,512,373 | SubstantialContributorsTotAmt |
| Public Support Total170 | $30,537,794 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,654 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $883 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $203 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $49,538 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $9,584 | CurrentTaxYearAmt |
| Total | $61,862 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus1 Year | $329,826 | CurrentTaxYearMinus1YearAmt |
| Total | $329,826 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $48,441,855 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $2,817,604 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.63040 | PublicSupportCY170Pct |
| Public Support PY170 | 0.61110 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $27,134 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $80,000 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $107,134 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $10,930,507 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $11,037,641 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $701,882 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $175,471 | FilingOrganizationsTotalAmt |
Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $692,649 | CurrentYearMinus3Amt |
| Current Year Minus2 | $478,942 | CurrentYearMinus2Amt |
| Current Year Minus1 | $542,168 | CurrentYearMinus1Amt |
| Current Year | $701,882 | CurrentYearAmt |
| Total | $2,415,641 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $3,623,462 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $190,000 | CurrentYearMinus3Amt |
| Current Year Minus2 | $30,000 | CurrentYearMinus2Amt |
| Current Year Minus1 | $50,000 | CurrentYearMinus1Amt |
| Current Year | $107,134 | CurrentYearAmt |
| Total | $377,134 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $173,162 | CurrentYearMinus3Amt |
| Current Year Minus2 | $119,736 | CurrentYearMinus2Amt |
| Current Year Minus1 | $135,542 | CurrentYearMinus1Amt |
| Current Year | $175,471 | CurrentYearAmt |
| Total | $603,911 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $905,867 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $13,325 | CurrentYearMinus3Amt |
| Current Year Minus2 | $12,440 | CurrentYearMinus2Amt |
| Current Year Minus1 | $16,400 | CurrentYearMinus1Amt |
| Current Year | $27,134 | CurrentYearAmt |
| Total | $69,299 | TotalAmt |
Schedule D IRS990ScheduleD
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $88,006 | OtherCostOrOtherBasisAmt |
| Depreciation | $62,586 | DepreciationAmt |
| Book Value | $25,420 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $16,019 | OtherCostOrOtherBasisAmt |
| Depreciation | $14,964 | DepreciationAmt |
| Book Value | $1,055 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $26,475 | TotalBookValueLandBuildingsAmt |
Other Securities OtherSecuritiesGrp (2 entries)
| DescDesc | Book ValueBookValueAmt | Method ValuationMethodValuationCd |
|---|---|---|
| REAL ESTATE INVESTMENT TRUST | $250,000 | F |
| U.S. TREASURY BONDS | $1,960,501 | F |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Securities | $2,210,501 | TotalBookValueSecuritiesAmt |
Invst Program Related Org InvstProgramRelatedOrgGrp (2 entries)
| DescDesc | Book ValueBookValueAmt | Method ValuationMethodValuationCd |
|---|---|---|
| AGREEMENT FOR FUTURE EQUITY | $850,479 | C |
| EQUITY SECURITIES | $138,898 | F |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Program Rltd | $989,377 | TotalBookValueProgramRltdAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)
| DescDesc | AmtAmt |
|---|---|
| GRANT RECEIVED WITH CONDITIONS | $87,200 |
| OPERATING LEASE LIABILITIES | $154,825 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $242,025 | TotalLiabilityAmt |
| Total Rev Etc Audited Fincl Stmt | $10,218,407 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | -$534,607 | NetUnrealizedGainsInvstAmt |
| Revenue Not Reported | -$534,607 | RevenueNotReportedAmt |
| Revenue Subtotal | $10,753,014 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $10,753,014 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $11,037,641 | TotExpnsEtcAuditedFinclStmtAmt |
| Expenses Not Reported | $0 | ExpensesNotReportedAmt |
| Expenses Subtotal | $11,037,641 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $11,037,641 | TotalExpensesPerForm990Amt |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | 0 | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|
| NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | $24,077 |
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | $66,772 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $90,849 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $90,849 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (4 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt | Non Cash AssistanceNonCashAssistanceAmt |
|---|---|---|---|---|
| NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES | CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | $24,077 | WIRE TRANSFER | $0 |
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | RESEARCH- MEETING SUPPORT | $20,000 | WIRE TRANSFER | $0 |
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | RESEARCH- PROTEIN MAPPING PROJECT | $21,452 | WIRE TRANSFER | $0 |
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | $25,320 | WIRE TRANSFER | $0 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART III ACCOUNTING METHOD: | FormAndLineReferenceDesc |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | SAM'S NIGHT | Event1Nm |
| Gross Receipts Event1 | $1,349,113 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $1,349,113 | CharitableContriEvent1Amt |
| Other Direct Expenses Event1 | $3,223 | OtherDirectExpensesEvent1Amt |
| Event2 | WALT DISNEY WORLD EVENT | Event2Nm |
| Gross Receipts Event2 | $294,568 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $294,568 | CharitableContriEvent2Amt |
| Other Direct Expenses Event2 | $64,620 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 33 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $1,279,329 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $1,279,329 | CharitableContriOtherEventsAmt |
| Oth Direct Expnss Other Events | $154,329 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $2,923,010 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $2,923,010 | CharitableContributionsTotAmt |
| Oth Direct Expnss Total Events | $222,172 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $222,172 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$222,172 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (23 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt | IRC SectionIRCSectionDesc | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|---|
| ANALYSIS GROUP | |||||||||
| 111 HUNTINGTON AVE 14TH | BOSTON | MA | 02199 | 042727260 | $106,667 | $0 | RESEARCH- SUPPORT OF COLLECTIVE ANALYSIS TRAJECTORY PROJECT | ||
| ARKANSAS CHILDREN'S HOSPITAL | |||||||||
| 1 CHILDRENS WAY SLOT 512-15 | LITTLE ROCK | AR | 72202 | 710568795 | $30,645 | $0 | RESEARCH- DORI EHR PROGRAM & CARE PROGRAM-AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | 501(C)(3) | |
| CINCINNATI CHILDREN'S HOSPITAL MC | |||||||||
| MLC 4900 | CINCINNATI | OH | 45229 | 310833936 | $641,008 | $0 | RESEARCH- ACTION NETWORK GRANT & CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | 501(C)(3) | |
| CRITICAL PATH INSTITUTE | |||||||||
| 1730 E RIVER ROAD SUITE 200 | TUCSON | AZ | 85718 | 201991334 | $100,000 | $0 | RESEARCH - SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM | 501(C)(3) | |
| DUKE UNIVERSITY | |||||||||
| A/R LOCKBOX PO BOX 602651 | CHARLOTTE | NC | 28260 | 560532129 | $30,163 | $0 | RESEARCH- DORI EHR PROGRAM & CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | 501(C)(3) | |
| ENERGIZING & EMPOWERING MINDS | |||||||||
| PO BOX 1134 | CARMEL | IN | 46082 | 474960300 | $10,000 | $0 | WELSTONE SUPPLEMENT | ||
| FASEB | |||||||||
| 6120 EXECUTIVE BLVD STE 230 | ROCKVILLE | MD | 20852 | 520700490 | $11,500 | $0 | RESEARCH- MEETING SUPPORT | 501(C)(3) | |
| KENNEDY KRIEGER INSTITUTE | |||||||||
| 707 NORTH BROADWAY 4TH FL TOWER | BALTIMORE | MD | 21205 | 521524967 | $10,000 | $0 | CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | 501(C)(3) | |
| LUCILE PACKARD FOUNDATION FOR CHILDREN'S HEALTH | |||||||||
| 400 HAMILTON AVE STE 340 | PALO ALTO | CA | 94301 | 770003859 | $10,000 | $0 | CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | 501(C)(3) | |
| MYOGENE BIO LLC | |||||||||
| 807 WESTWOOD BLVD 376 | LOS ANGELES | CA | 90024 | 831507849 | $50,000 | $0 | RESEARCH- MYOGENE DEVELOPMENT OF MYODYS45-55 | ||
| NATIONWIDE CHILDRENS HOSPITAL | |||||||||
| 700 CHILDRENS DR | COLUMBUS | OH | 43205 | 316056230 | $35,000 | $0 | CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | 501(C)(3) | |
| NEW YORK UNIVERSITY | |||||||||
| ONE PARK AVE 5TH FLOOR | NEW YORK | NY | 10016 | 135562308 | $100,000 | $0 | RESEARCH- PEDIATRIC GENE THERAPY MEDICAL ETHICS | 501(C)(3) | |
| NORTHWESTERN UNIVERSITY | |||||||||
| 633 CLARK ROOM G-547 | EVANSTON | IL | 60208 | 362167817 | $73,500 | $0 | RESEARCH- WELLSTONE SUPPLEMENT | 501(C)(3) | |
| OHIO STATE UNIVERSITY | |||||||||
| 1960 KENNY ROAD | COLUMBUS | OH | 43210 | 316025986 | $30,862 | $0 | RESEARCH- DIVERSITY EQUITY AND INCLUSION INTERVIEWS | 501(C)(3) | |
| REALLY USEFUL ROBOTS | |||||||||
| 26 SHADY BROOK DR | LANGHORNE | PA | 19047 | 844830485 | $12,117 | $0 | RESEARCH- ASSESSMENT OF EFFICACY AND MAINTENANCE OF PASSIVE EXOSKELETONS WITH MOTOR ACTUATION ASSIST FOR PATIENTS WITH DUCHENNES MUSCULAR DYSTROPHY | ||
| REGENTS OF THE UNIVERSITY OF CALIFORNIA-LA | |||||||||
| 1125 MURPHY HALL 405 HILGARD | LOS ANGELES | CA | 90095 | 956006143 | $20,000 | $0 | RESEARCH- WELLSTONE SUPPLEMENT & CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | 501(C)(3) | |
| RESEARCH FOUNDATION FOR SUNY | |||||||||
| PO BOX 6000 | BINGHAMTON | NY | 13902 | 141368361 | $50,000 | $0 | RESEARCH- DUK 2020 GRANT IMMUNE MODULATION | 501(C)(3) | |
| TEAM JOSEPH | |||||||||
| 5745 W MAPLE RD STE 204 | WEST BLOOMFIELD | MI | 48322 | 800613664 | $145,000 | $0 | CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | ||
| THE NEMOURS FOUNDATION | |||||||||
| 1600 ROCKLAND ROAD | WILMINGTON | DE | 19803 | 590634433 | $92,276 | $0 | CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | 501(C)(3) | |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA-BERKELEY | |||||||||
| 2195 HEARST AVE RM 130 MC 1103 | BERKELEY | CA | 94720 | 946002123 | $86,529 | $0 | RESEARCH- WELLSTONE SUPPLEMENT | 501(C)(3) | |
| TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA | |||||||||
| 3451 WALNUT STR 5TH FLOOR FRANKLIN | PHILADELPHIA | PA | 19104 | 231352685 | $50,000 | $0 | CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | 501(C)(3) | BLDG |
| UNIVERSITY OF FLORIDA | |||||||||
| 219 GRINTER HALL | GAINESVILLE | FL | 32611 | 596002052 | $271,241 | $0 | RESEARCH- PROTEIN MAPPING PROJECT, TRAVEL SUPPORT FOR NATURAL HISTORY STUDY AND WELLSTONE SUPPLEMENT | 501(C)(3) | |
| UNIVERSITY OF FLORIDA FOUNDATION | |||||||||
| 1200 NEWELL DRIVE ARB R5-234 PO BOX | GAINESVILLE | FL | 32610 | 590974739 | $436,910 | $0 | RESEARCH- BIOBANK, CARDIAC GENE THERAPY DEVELOPMENT SWEENEY, MEETING SUPPORT AND PRECLINICAL THERAPEUTIC ASSESSMENT LAB | 501(C)(3) | 100267 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | THE ORGANIZATION HAS A STANDARDIZED GRANT TEMPLATE THAT REQUIRES REGULAR PERIODIC REPORTING OF THE USE OF GRANT FUNDS AND A PROGRESS REPORT OF THE GRANT ACTIVITIES. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (5 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| PATRICIA A FURLONG | ||||||||||||||
| PRESIDENT AND CEO | $292,250 | $0 | $0 | $0 | $0 | $0 | $11,871 | $0 | $777 | $0 | $304,898 | $0 | $0 | $0 |
| RYAN FISCHER | ||||||||||||||
| CHIEF ADVOCACY OFFICER | $187,206 | $0 | $0 | $0 | $0 | $0 | $6,698 | $0 | $7,802 | $0 | $201,706 | $0 | $0 | $0 |
| KAYLAN MOITOSO | ||||||||||||||
| CHIEF BUSINESS OFFICER | $184,600 | $0 | $0 | $0 | $0 | $0 | $9,314 | $0 | $129 | $0 | $194,043 | $0 | $0 | $0 |
| RACHEL SCHRADER | ||||||||||||||
| VICE PRESIDENT, CLINICAL CARE AND ED | $153,280 | $0 | $0 | $0 | $0 | $0 | $7,697 | $0 | $7,427 | $0 | $168,404 | $0 | $0 | $0 |
| ANN MARTIN | ||||||||||||||
| VP, COMM RESEARCH AND GENETIC SERVIC | $151,910 | $0 | $0 | $0 | $0 | $0 | $6,959 | $0 | $129 | $0 | $158,998 | $0 | $0 | $0 |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 4 | ContributionCnt |
| Noncash Contributions Rpt F990 | $1,000,092 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV ON DATE OF GIFT | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | Yes (1) | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 8B | NO COMMITTEE HAS AUTHORITY TO ACT ON BEHALF OF THE ENTIRE BOARD. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE 990 IS COMPLETED BY AN INDEPENDENT CPA FIRM AND A DRAFT IS PRESENTED TO THE BOARD MEMBERS FOR REVIEW. THE BOARD THEN VOTES TO APPROVE THE 990 BEFORE IT IS SIGNED AND MAILED. IF THERE ARE ANY COMMENTS OR QUESTIONS THE ISSUE IS RESOLVED PRIOR TO FILING THE 990 WITH THE IRS. |
| FORM 990, PART VI, SECTION B, LINE 12C | THE SECRETARY IS RESPONSIBLE TO ENSURE EACH BOARD MEMBER HAS COMPLETED THEIR WRITTEN STATEMENT ANNUALLY. |
| FORM 990, PART VI, SECTION B, LINE 15 | PARENT PROJECT MUSCULAR DYSTROPHY CEO COMPENSATION REVIEW PROCESS THE PRESIDENT AND CEO IS THE PRINCIPAL REPRESENTATIVE OF THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH ("PPMD"), AND THE PERSON RESPONSIBLE FOR THE EFFICIENT OPERATION OF THE ORGANIZATION. THE ANNUAL PROCESS FOR DETERMINING HIS/HER COMPENSATION IS AS FOLLOWS: PPMD SHALL [EITHER THE FULL BOARD OR A COMPENSATION COMMITTEE/EXECUTIVE COMMITTEE] ANNUALLY EVALUATE THE PRESIDENT AND CEO ON HIS/HER PERFORMANCE, AND ASK FOR HIS/HER INPUT ON MATTERS OF PERFORMANCE AND COMPENSATION. BOARD APPROVAL. THE BOARD COMMITTEE WILL OBTAIN RESEARCH AND INFORMATION TO MAKE A RECOMMENDATION TO THE FULL BOARD FOR THE COMPENSATION (SALARY AND BENEFITS) OF THE PRESIDENT AND CEO BASED ON A REVIEW OF COMPARABILITY DATA. THIS DATA MAY INCLUDE THE FOLLOWING: - SALARY AND BENEFIT COMPENSATION STUDIES BY INDEPENDENT SOURCES; - WRITTEN JOB OFFERS FOR POSITIONS AT SIMILAR ORGANIZATIONS; - DOCUMENTED TELEPHONE CALLS ABOUT SIMILAR POSITIONS AT BOTH NONPROFIT AND FOR-PROFIT ORGANIZATIONS; AND - INFORMATION OBTAINED FROM THE IRS FORM 990 FILINGS OF SIMILAR ORGANIZATIONS. |
| FORM 990, PART VI, SECTION C, LINE 19 | AVAILABLE UPON REQUEST. |
| FORM 990, PART XII, LINE 2C | THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR. |
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