THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC: Form 990, tax year 2024
View the entire original 990 at ProPublica ↗
- Organization
- THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC (EIN 31-1405490)
- Tax period
- 2024-01-01 to 2024-12-31
- Filed
- 2025-08-21
- IRS object ID
- 202522339349301912
- Schema version
- 2024v5.2
- 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
- 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 | 2025-08-21T16:07:53-05:00 | ReturnTs |
| Tax Period End | 2024-12-31 | 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 | 2024-01-01 | 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 | 2025-07-28 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
| 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 | 2025-07-28 | PreparationDt |
| Self Employed | Yes (X) | SelfEmployedInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2024 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | 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 | $15,003,956 | 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 | 16 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 16 | VotingMembersIndependentCnt |
| Total Employee | 27 | TotalEmployeeCnt |
| Total Volunteers | 500 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $12,660,929 | PYContributionsGrantsAmt |
| CY Contributions Grants | $10,008,956 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $1,210,969 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $2,234,268 | CYProgramServiceRevenueAmt |
| PY Investment Income | $88,569 | PYInvestmentIncomeAmt |
| CY Investment Income | $150,586 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$79,382 | PYOtherRevenueAmt |
| CY Other Revenue | $1,917,951 | CYOtherRevenueAmt |
| PY Total Revenue | $13,881,085 | PYTotalRevenueAmt |
| CY Total Revenue | $14,311,761 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $2,560,127 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $2,650,583 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $3,699,580 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $4,089,108 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $662,951 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $5,852,779 | PYOtherExpensesAmt |
| CY Other Expenses | $6,141,711 | CYOtherExpensesAmt |
| PY Total Expenses | $12,112,486 | PYTotalExpensesAmt |
| CY Total Expenses | $12,881,402 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $1,768,599 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $1,430,359 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $10,440,900 | TotalAssetsBOYAmt |
| Total Assets EOY | $12,567,424 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $634,715 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $1,109,314 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $9,806,185 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $11,458,110 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | THE PARENT PROJECT MUSCULAR DYSTROPHY (PPMD) FIGHTS TO END DUCHENNE. WE ACCELERATE RESEARCH, RAISE OUR VOICES TO IMPACT POLICY, DEMAND OPTIMAL CARE FOR EVERY SINGLE FAMILY, AND STRIVE TO ENSURE ACCESS TO APPROVED THERAPIES. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $7,260,936 | ExpenseAmt |
| Grant | $2,443,083 | GrantAmt |
| Revenue | $4,432,545 | RevenueAmt |
| Desc | RESEARCHPPMD'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 PRE-COMPETITIVE 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 REGISTRYESTABLISHED IN 2007, THE DUCHENNE REGISTRY IS THE LARGEST PATIENT-REPORTED DATA REPOSITORY FOR INDIVIDUALS LIVING WITH DUCHENNE AND BECKER MUSCULAR DYSTROPHY AND CARRIER FEMALES. WITH PARTICIPATION FROM OVER 6,000 FAMILIES WORLDWIDE, THE REGISTRY HELPS BRIDGE INFORMATION GAPS BETWEEN FAMILIES, CLINICIANS, AND RESEARCHERS. IT HAS CONTRIBUTED TO 14 PEER-REVIEWED PUBLICATIONS AND SUPPORTED OVER 85 CLINICAL TRIALS THROUGH TARGETED OUTREACH.PPMD ALSO MANAGES COMPLEMENTARY INITIATIVES:-THE DUCHENNE OUTCOMES RESEARCH INTERCHANGE (THE INTERCHANGE) AGGREGATES PATIENT- AND CLINICIAN-REPORTED DATA TO PROVIDE A COMPREHENSIVE VIEW OF THE LIVED EXPERIENCE OF DUCHENNE, SUPPORTING REAL-WORLD EVIDENCE GENERATION.- THE ELECTRONIC HEALTH RECORD (EHR) STUDY EXTRACTS DE-IDENTIFIED CLINICAL DATA FROM CERTIFIED DUCHENNE CARE CENTERS TO IMPROVE CARE AND INFORM RESEARCH WITHOUT ADDING BURDEN TO PATIENTS OR PROVIDERS.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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $2,863,541 | ExpenseAmt |
| Grant | $7,500 | GrantAmt |
| Desc | EDUCATIONPPMD'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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $1,250,344 | ExpenseAmt |
| Grant | $200,000 | GrantAmt |
| Desc | ADVOCACYPPMD 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 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $11,374,821 | 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 | 44 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 27 | 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 | 16 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 16 | IndependentVotingMemberCnt |
| Family Or Business Rln | Yes (1) | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | 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 | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | HI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | 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 | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | 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 (21 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 |
|---|---|---|---|---|---|---|---|
| GRETCHEN EGNER | |||||||
| BOARD CHAIRMAN | 8.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| ALPA KHUSHALANI | |||||||
| VICE CHAIR | 8.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| DAWN REZKALLA | |||||||
| 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 COMMITTEE | 6.00 | Yes (X) | $0 | $0 | $0 | ||
| SUE APKON | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| JEFFREY BIGELOW | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| MARU CHAPUR | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| TIMOTHY CRIPE | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| MICHELLE FURLONG | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| LANCE HESTER | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| SUSAN HUANG | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| JOHN KILLIAN | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| RICHARD KLEIN | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| SCOTT PERRIN | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| COLIN RENSCH | |||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| PATRICIA A FURLONG | |||||||
| PRESIDENT AND CEO | 40.00 | Yes (X) | $370,075 | $0 | $13,694 | ||
| KAYLAN MOITOSO | |||||||
| CHIEF BUSINESS OFFICER | 40.00 | $293,650 | $0 | $9,025 | Yes (X) | ||
| JODI WOLFF | |||||||
| CHIEF PROGRAM OFFICER | 40.00 | $194,569 | $0 | $12,395 | Yes (X) | ||
| ANN MARTIN | |||||||
| VICE PRESIDENT, COMMUNITY RESEARCH & GENETIC SERV. | 40.00 | $176,600 | $0 | $16,829 | Yes (X) | ||
| RACHEL SCHRADER | |||||||
| VICE PRESIDENT, CLINICAL CARE & EDUCATION | 40.00 | $174,800 | $0 | $33,557 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $1,209,694 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $85,500 | 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 |
|---|---|---|---|---|---|
| OMNI HOTELS | |||||
| 1500 MASTERS BLVD | DAVENPORT | FL | 33896 | MEETING AND CONFERENCE SERVICES | $978,891 |
| SANIBEL HARBOUR MARRIOTT RESORT AND SPA | |||||
| 17260 HARBOUR POINTE DR | FT MYERS | FL | 33908 | MEETING AND CONFERENCE SERVICES | $413,775 |
| FAEGRE DRINKER BIDDLE & REATH LLP | |||||
| 75 REMITTANCE DRIVE DEPT 6952 | CHICAGO | IL | 60675 | LEGAL AND REGULATORY CONSULTING | $372,956 |
| UHS PREMIUM BILLING | |||||
| PO BOX 94017 | PALATINE | IL | 60094 | HEALTH INSURANCE | $311,634 |
| ALL COLORS | |||||
| 425 RARITAN AVENUE | HIGHLAND PARK | NJ | 08904 | MATERIALS SUPPLIER, SHIPPING, AND STORAG | $277,424 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 16 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $3,216,030 | FundraisingAmt |
| All Other Contributions | $6,792,926 | AllOtherContributionsAmt |
| Total Contributions | $10,008,956 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (3 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| CONFERENCE INCOME | 900099 | $830,046 | $830,046 |
| OTHER MEETINGS AND CONFERENCES | 900099 | $720,300 | $720,300 |
| FEES FOR SERVICE | 900099 | $683,922 | $683,922 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $2,234,268 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $149,903 | TotalRevenueColumnAmt |
| Exclusion | $149,903 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $305,688 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $305,005 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $683 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $683 | TotalRevenueColumnAmt |
| Exclusion | $683 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $106,864 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $3,216,030 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $387,190 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$280,326 | TotalRevenueColumnAmt |
| Exclusion | -$280,326 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp (3 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| REVENUE SHARING | 900099 | $2,193,277 | $2,193,277 |
| OTHER | 900099 | $4,849 | $4,849 |
| RECOVERY OF PREVIOUSLY AWARDED GR | 900099 | $151 | $151 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $2,198,277 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $14,311,761 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $4,432,545 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$129,740 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part IX | Yes (X) | InfoInScheduleOPartIXInd |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,464,612 | TotalAmt |
| Program Services | $2,464,612 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $185,971 | TotalAmt |
| Program Services | $185,971 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $370,075 | TotalAmt |
| Program Services | $314,564 | ProgramServicesAmt |
| Management And General | $18,504 | ManagementAndGeneralAmt |
| Fundraising | $37,007 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,045,805 | TotalAmt |
| Program Services | $2,582,039 | ProgramServicesAmt |
| Management And General | $192,317 | ManagementAndGeneralAmt |
| Fundraising | $271,449 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $145,866 | TotalAmt |
| Program Services | $122,338 | ProgramServicesAmt |
| Management And General | $10,502 | ManagementAndGeneralAmt |
| Fundraising | $13,026 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $287,801 | TotalAmt |
| Program Services | $241,342 | ProgramServicesAmt |
| Management And General | $20,755 | ManagementAndGeneralAmt |
| Fundraising | $25,704 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $239,561 | TotalAmt |
| Program Services | $200,920 | ProgramServicesAmt |
| Management And General | $17,248 | ManagementAndGeneralAmt |
| Fundraising | $21,393 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $153,709 | TotalAmt |
| Program Services | $86,114 | ProgramServicesAmt |
| Management And General | $67,177 | ManagementAndGeneralAmt |
| Fundraising | $418 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,000 | TotalAmt |
| Management And General | $22,000 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,369,143 | TotalAmt |
| Program Services | $1,146,523 | ProgramServicesAmt |
| Management And General | $174,370 | ManagementAndGeneralAmt |
| Fundraising | $48,250 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $51,895 | TotalAmt |
| Program Services | $49,892 | ProgramServicesAmt |
| Fundraising | $2,003 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $49,199 | TotalAmt |
| Program Services | $6,065 | ProgramServicesAmt |
| Management And General | $42,943 | ManagementAndGeneralAmt |
| Fundraising | $191 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $82,826 | TotalAmt |
| Program Services | $78,170 | ProgramServicesAmt |
| Management And General | $2,570 | ManagementAndGeneralAmt |
| Fundraising | $2,086 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $535,207 | TotalAmt |
| Program Services | $512,763 | ProgramServicesAmt |
| Management And General | $5,755 | ManagementAndGeneralAmt |
| Fundraising | $16,689 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $244,273 | TotalAmt |
| Program Services | $238,835 | ProgramServicesAmt |
| Management And General | $5,438 | ManagementAndGeneralAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $15,473 | TotalAmt |
| Program Services | $13,121 | ProgramServicesAmt |
| Management And General | $955 | ManagementAndGeneralAmt |
| Fundraising | $1,397 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $21,538 | TotalAmt |
| Program Services | $14,644 | ProgramServicesAmt |
| Management And General | $5,335 | ManagementAndGeneralAmt |
| Fundraising | $1,559 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| ANNUAL CONFERENCE | $1,432,211 | $1,432,211 | $0 | $0 |
| PROGRAM SUPPLIES | $754,944 | $754,944 | $0 | $0 |
| MEALS | $562,431 | $557,779 | $3,313 | $1,339 |
| TECHNOLOGY | $329,031 | $103,013 | $173,839 | $52,179 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $517,831 | TotalAmt |
| Program Services | $268,961 | ProgramServicesAmt |
| Management And General | $80,609 | ManagementAndGeneralAmt |
| Fundraising | $168,261 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $12,881,402 | TotalAmt |
| Program Services | $11,374,821 | ProgramServicesAmt |
| Management And General | $843,630 | ManagementAndGeneralAmt |
| Fundraising | $662,951 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,303,990 | BOYAmt |
| EOY | $5,201,236 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,500,476 | BOYAmt |
| EOY | $1,500,774 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,565,673 | BOYAmt |
| EOY | $940,770 | EOYAmt |
Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $252,548 | BOYAmt |
| EOY | $550,137 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $65,513 | BOYAmt |
| EOY | $87,886 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $367,666 | BOYAmt |
| EOY | $474,736 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $121,064 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $106,797 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $20,361 | BOYAmt |
| EOY | $14,267 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $282,716 | BOYAmt |
| EOY | $505,462 | EOYAmt |
Investments Other Securities InvestmentsOtherSecuritiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,113,362 | BOYAmt |
| EOY | $2,357,590 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $850,479 | BOYAmt |
| EOY | $850,479 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $118,116 | BOYAmt |
| EOY | $84,087 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $10,440,900 | BOYAmt |
| EOY | $12,567,424 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $435,449 | BOYAmt |
| EOY | $458,828 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $102,502 | BOYAmt |
| EOY | $556,646 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $17,450 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $96,764 | BOYAmt |
| EOY | $76,390 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $634,715 | BOYAmt |
| EOY | $1,109,314 | 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 | $7,453,058 | BOYAmt |
| EOY | $9,034,708 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,353,127 | BOYAmt |
| EOY | $2,423,402 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,806,185 | BOYAmt |
| EOY | $11,458,110 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $10,440,900 | BOYAmt |
| EOY | $12,567,424 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $1,430,359 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $221,566 | 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 | $8,889,998 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $9,127,402 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,959,415 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $12,802,680 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $10,008,956 | CurrentTaxYearAmt |
| Total | $50,788,451 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $8,889,998 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $9,127,402 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,959,415 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $12,802,680 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $10,008,956 | CurrentTaxYearAmt |
| Total | $50,788,451 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $18,497,581 | SubstantialContributorsTotAmt |
| Public Support Total170 | $32,290,870 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $203 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $49,538 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,584 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $88,182 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $149,903 | CurrentTaxYearAmt |
| Total | $297,410 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus3 Years | $329,826 | CurrentTaxYearMinus3YearsAmt |
| Total | $329,826 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $51,415,687 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $5,132,971 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.62800 | PublicSupportCY170Pct |
| Public Support PY170 | 0.63100 | 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 | $18,121 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $70,000 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $88,121 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $12,793,281 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $12,881,402 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $794,070 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $198,518 | 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 | $542,168 | CurrentYearMinus3Amt |
| Current Year Minus2 | $701,882 | CurrentYearMinus2Amt |
| Current Year Minus1 | $755,624 | CurrentYearMinus1Amt |
| Current Year | $794,070 | CurrentYearAmt |
| Total | $2,793,744 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $4,190,616 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $50,000 | CurrentYearMinus3Amt |
| Current Year Minus2 | $107,134 | CurrentYearMinus2Amt |
| Current Year Minus1 | $110,148 | CurrentYearMinus1Amt |
| Current Year | $88,121 | CurrentYearAmt |
| Total | $355,403 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $135,542 | CurrentYearMinus3Amt |
| Current Year Minus2 | $175,471 | CurrentYearMinus2Amt |
| Current Year Minus1 | $188,906 | CurrentYearMinus1Amt |
| Current Year | $198,518 | CurrentYearAmt |
| Total | $698,437 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $1,047,656 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $16,400 | CurrentYearMinus3Amt |
| Current Year Minus2 | $27,134 | CurrentYearMinus2Amt |
| Current Year Minus1 | $30,148 | CurrentYearMinus1Amt |
| Current Year | $18,121 | CurrentYearAmt |
| Total | $91,803 | TotalAmt |
Schedule D IRS990ScheduleD
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $105,045 | OtherCostOrOtherBasisAmt |
| Depreciation | $90,778 | DepreciationAmt |
| Book Value | $14,267 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $16,019 | OtherCostOrOtherBasisAmt |
| Depreciation | $16,019 | DepreciationAmt |
| Book Value | $0 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $14,267 | TotalBookValueLandBuildingsAmt |
Other Securities OtherSecuritiesGrp (2 entries)
| DescDesc | Book ValueBookValueAmt | Method ValuationMethodValuationCd |
|---|---|---|
| REAL ESTATE INVESTMENT TRUST | $398,582 | F |
| U.S. TREASURY BONDS | $1,959,008 | F |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Securities | $2,357,590 | TotalBookValueSecuritiesAmt |
Invst Program Related Org InvstProgramRelatedOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | AGREEMENT FOR FUTURE EQUITY | Desc |
| Book Value | $850,479 | BookValueAmt |
| Method Valuation | C | MethodValuationCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Program Rltd | $850,479 | TotalBookValueProgramRltdAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | OPERATING LEASE LIABILITIES | Desc |
| Amt | $76,390 | Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $76,390 | TotalLiabilityAmt |
| Total Rev Etc Audited Fincl Stmt | $14,533,327 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $221,566 | NetUnrealizedGainsInvstAmt |
| Revenue Not Reported | $221,566 | RevenueNotReportedAmt |
| Revenue Subtotal | $14,311,761 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $14,311,761 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $12,881,402 | TotExpnsEtcAuditedFinclStmtAmt |
| Expenses Not Reported | $0 | ExpensesNotReportedAmt |
| Expenses Subtotal | $12,881,402 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $12,881,402 | 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 | $152,910 |
| EUROPE (INCLUDING ICELAND & GREENLAND) | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | $33,061 |
| 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 | $185,971 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $185,971 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 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 FELLOWSHIP | $80,000 | WIRE TRANSFER | $0 |
| EUROPE (INCLUDING ICELAND & GREENLAND) | RESEARCH - BRAIN PROJECT AND PROTEIN MAPPING PROJECT | $33,061 | WIRE TRANSFER | $0 |
| NORTH AMERICA | RESEARCH - JENSEN SPECIFIC | $72,910 | 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 |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | SAM'S NIGHT | Event1Nm |
| Gross Receipts Event1 | $1,171,207 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $1,171,207 | CharitableContriEvent1Amt |
| Event2 | WALT DISNEY WORLD EVENT | Event2Nm |
| Gross Receipts Event2 | $516,972 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $516,972 | CharitableContriEvent2Amt |
| Other Direct Expenses Event2 | $55,561 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 32 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $1,634,715 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $1,527,851 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $106,864 | GrossRevenueOtherEventsAmt |
| Oth Direct Expnss Other Events | $331,629 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $3,322,894 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $3,216,030 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $106,864 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $387,190 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $387,190 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$280,326 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (29 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|---|
| ANALYSIS GROUPCTAP | |||||||||
| 111 HUNTINGTON AVE 14TH FLOOR | BOSTON | MA | 02199 | 042727260 | C CORPORATION | $40,000 | $0 | RESEARCH- SUPPORT OF COLLECTIVE ANALYSIS TRAJECTORY PROJECT | |
| ARKANSAS CHILDREN'S HOSPITAL | |||||||||
| 13 CHILDRENS WAY | LITTLE ROCK | AR | 72202 | 710694931 | 501 (C) (3) | $15,000 | $0 | RESEARCH- NEWBORN SCREENING | |
| ARKANSAS CHILDREN'S HOSPITAL | |||||||||
| 13 CHILDRENS WAY | LITTLE ROCK | AR | 72202 | 710694931 | 501 (C) (3) | $57,603 | $0 | RESEARCH- DORI EHR PROGRAM | |
| CINCINNATI CHILDREN'S HOSPITAL MC | |||||||||
| MLC 49003333 BURNET AVENUE | CINCINNATI | OH | 45229 | 310833936 | 501 (C) (3) | $25,000 | $0 | RESEARCH- NEWBORN SCREENING | |
| CINCINNATI CHILDREN'S HOSPITAL MC | |||||||||
| MLC 49003333 BURNET AVENUE | CINCINNATI | OH | 45229 | 310833936 | 501 (C) (3) | $617,000 | $0 | RESEARCH- ACTION NETWORK GRANT | |
| CRITICAL PATH | |||||||||
| 1730 E RIVER ROAD SUITE 200 | TUCSON | AZ | 85718 | 201991334 | 501 (C) (3) | $100,000 | $0 | RESEARCH - SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM | |
| NATIONWIDE CHILDREN'S HOSPITAL | |||||||||
| 700 CHILDRENS DR | COLUMBUS | OH | 43205 | 316056230 | 501 (C) (3) | $60,000 | $0 | RESEARCH - MEETING SUPPORT | |
| NORTHWESTERN UNIVERSITY | |||||||||
| 633 CLARK ROOM G-547 | EVANSTON | IL | 60208 | 362167817 | 501 (C) (3) | $73,500 | $0 | RESEARCH - WELLSTONE SUPPLEMENT | |
| NYU LANGONE HEALTH | |||||||||
| 350 FIRST AVE | NEW YORK | NY | 10016 | 135562308 | 501 (C) (3) | $200,000 | $0 | RESEARCH - GENE THERAPY | |
| NEW YORK UNIVERSITY | |||||||||
| ONE PARK AVE 5TH FLOOR | NEW YORK | NY | 10016 | 135562308 | 501 (C) (3) | $100,000 | $0 | RESEARCH - PEDIATRIC THERAPY MEDICAL ETHICS | |
| OHIO STATE UNIVERSITY | |||||||||
| 1960 KENNY ROAD | COLUMBUS | OH | 43210 | 316025986 | $28,236 | $0 | RESEARCH - DIVERSITY EQUITY AND INCLUSION INTERVIEWS | ||
| OHIO STATE UNIVERSITY | |||||||||
| 1960 KENNY ROAD | COLUMBUS | OH | 43210 | 316025986 | $84,363 | $0 | RESEARCH - FELLOWSHIP | ||
| OHIO STATE UNIVERSITY | |||||||||
| 1960 KENNY ROAD | CINCINNATI | OH | 43210 | 316025986 | $19,000 | $0 | RESEARCH - NEWBORN SCREENING | ||
| OHIO STATE UNIVERSITY | |||||||||
| 1960 KENNY ROAD | CINCINNATI | OH | 43210 | 316025986 | $50,000 | $0 | RESEARCH - PATIENT PREFERENCE | ||
| REGENTS OF THE UNIVERSITY OF CALIFORNIA - LA | |||||||||
| 1125 MURPHY HALL 405 HILGARD | LOS ANGELES | CA | 90095 | 956006143 | 501 (C) (3) | $10,000 | $0 | RESEARCH - DMD MOLECULAR AND CELLULAR DYNAMICS AT SINGLE NUCLEAR RESOLUTION | |
| REGENTS OF THE UNIVERSITY OF CALIFORNIA - LA | |||||||||
| 1125 MURPHY HALL 405 HILGARD | LOS ANGELES | CA | 90095 | 956006143 | 501 (C) (3) | $15,000 | $0 | RESEARCH - WELLSTONE SUPPLEMENT | |
| REGENTS OF UNIVERSITY OF MINNESOTA | |||||||||
| 2221 UNIVERSITY AVE SE STE 100 | MINNEAPOLIS | MN | 55414 | 416007513 | $25,000 | $0 | RESEARCH - CLINICAL TRIALS | ||
| THE UNIVERSITY OF IOWA | |||||||||
| 105 JESSUP HALL | IOWA CITY | IA | 52242 | 426004813 | $25,000 | $0 | RESEARCH - DORI EHR PROGRAM | ||
| UNIVERSITY OF CALIFORNIA BERKELEY | |||||||||
| 2195 HEARST AVE RM 130 | BERKLEY | CA | 94720 | 946002123 | 501 (C) (3) | $57,690 | $0 | RESEARCH - BIOMARKER | |
| UNIVERSITY OF COLORADO AT DENVER | |||||||||
| MAIL STOP F428 BLDG 500 13001 E | AURORA | CO | 80045 | 846000555 | $50,000 | $0 | RESEARCH - DORI EHR PROGRAM | 17TH PL | |
| UNIVERSITY OF FLORIDA | |||||||||
| 219 GRINTER HALL PO BOX 115500 | GAINESVILLE | FL | 32611 | 596002052 | 501 (C) (3) | $40,000 | $0 | RESEARCH - MEETING SUPPORT | |
| UNIVERSITY OF FLORIDA | |||||||||
| 219 GRINTER HALL PO BOX 115500 | GAINESVILLE | FL | 32611 | 596002052 | 501 (C) (3) | $178,500 | $0 | RESEARCH - WELLSTONE SUPPLEMENT | |
| UNIVERSITY OF FLORIDA FOUNDATION | |||||||||
| 1200 NEWELL DRIVE ARB R5-234 PO BOX | GAINESVILLE | FL | 32610 | 590974739 | 501 (C) (3) | $300,000 | $0 | RESEARCH - PRECLINICAL THERAPEUTIC ASSESSMENT LAB | 100267 |
| UNIVERSITY OF MASSACHUSETTS CHAN MED SCHOOL | |||||||||
| 55 LAKE AVE N | WORCESTER | MA | 01655 | 043167352 | $20,000 | $0 | RESEARCH - NEWBORN SCREENING | ||
| UNIVERSITY OF ROCHESTER MEDICAL CENTER | |||||||||
| 601 ELMWOOD AVE PO BOX 673 | ROCHESTER | NY | 14642 | 160743209 | $210,000 | $0 | RESEARCH - NEWBORN SCREENING | ||
| UNIVERISTY OF UTAH PRIMARY CHILDREN'S EHR | |||||||||
| 295 CHIPETA WAY | SALT LAKE CITY | UT | 84158 | 876000525 | 501 (C) (3) | $25,163 | $0 | RESEARCH - DORI EHR PROGRAM | |
| VANDERBILT | |||||||||
| 1211 MEDICAL CENTER DR | NASHVILLE | TN | 37232 | 352525741 | 501 (C) (3) | $10,000 | $0 | RESEARCH - NEWBORN SCREENING | |
| VIRGINIA TECH FOUNDATION | |||||||||
| 220 GILVERT ST | BLACKSBURG | VA | 24061 | 540721690 | 501 (C) (3) | $7,500 | $0 | RESEARCH - ROBOTICS | |
| THE NEMOURS FOUNDATION | |||||||||
| 1600 ROCKLAND ROAD | WILMINGTON | DE | 19803 | 590634433 | 501 (C) (3) | $7,273 | $0 | CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS | |
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 | $342,375 | $0 | $27,700 | $0 | $0 | $0 | $13,662 | $0 | $32 | $0 | $383,769 | $0 | $0 | $0 |
| KAYLAN MOITOSO | ||||||||||||||
| CHIEF BUSINESS OFFICER | $271,250 | $0 | $22,400 | $0 | $0 | $0 | $8,896 | $0 | $129 | $0 | $302,675 | $0 | $0 | $0 |
| RACHEL SCHRADER | ||||||||||||||
| VICE PRESIDENT, CLINICAL CARE & EDUC | $161,800 | $0 | $13,000 | $0 | $0 | $0 | $8,800 | $0 | $24,757 | $0 | $208,357 | $0 | $0 | $0 |
| JODI WOLFF | ||||||||||||||
| CHIEF PROGRAM OFFICER | $194,569 | $0 | $0 | $0 | $0 | $0 | $9,385 | $0 | $3,010 | $0 | $206,964 | $0 | $0 | $0 |
| ANN MARTIN | ||||||||||||||
| VICE PRESIDENT, COMMUNITY RESEARCH & | $163,600 | $0 | $13,000 | $0 | $0 | $0 | $8,888 | $0 | $7,941 | $0 | $193,429 | $0 | $0 | $0 |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 6 | ContributionCnt |
| Noncash Contributions Rpt F990 | $580,830 | 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 (8 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 2 | MICHELLE FURLONG - DIRECTOR IS THE DAUGHTER OF PATRICIA FURLONG CEO, OFFICER |
| 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 IX, LINE 11G | CONSULTANTS: PROGRAM SERVICE EXPENSES 1,146,523. MANAGEMENT AND GENERAL EXPENSES 174,370. FUNDRAISING EXPENSES 48,250. TOTAL EXPENSES 1,369,143. |
| FORM 990, PART XII, LINE 2C | THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR. |