CHARLEYS FUND INC: Form 990, tax year 2020
View the entire original 990 at ProPublica ↗
- Organization
- CHARLEYS FUND INC (EIN 20-2014968)
- Tax period
- 2020-01-01 to 2020-12-31
- Filed
- 2021-11-11
- IRS object ID
- 202143159349309004
- Schema version
- 2020v4.1
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule D
- Schedule I
- Schedule J
- Schedule M
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2021-11-11T21:48:03-06:00 | ReturnTs |
| Tax Period End | 2020-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 133628255 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CONDON O'MEARA MCGINTY & DONNELLY LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | ONE BATTERY PARK PLAZA | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10004 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2020-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 202014968 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CHARLEY'S FUND INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | CHAR | BusinessNameControlTxt |
| Phone | 4135280400 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 635 MAIN STREET SUITE 3 | AddressLine1Txt |
| City | GREAT BARRINGTON | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 01230 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | TRACY KRAMER SECKLER | PersonNm |
| Person Title | CO-FOUNDER/CEO | PersonTitleTxt |
| Phone | 4135280400 | PhoneNum |
| Signature | 2021-11-10 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Signing Officer SigningOfficerGrp
Person Full Name PersonFullName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person First | TRACY | PersonFirstNm |
| Person Last | KRAMER SECKLER | PersonLastNm |
| Field | Value | IRS element (for citing) |
|---|---|---|
| SSN | 999009999 | SSN |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | JAMES J REILLY | PreparerPersonNm |
| PTIN | P00183769 | PTIN |
| Phone | 2126617777 | PhoneNum |
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 | 2020 | TaxYr |
| Build TS | 2022-09-23 18:48:47Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | TRACY KRAMER SECKLER | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 635 MAIN STREET SUITE 3 | AddressLine1Txt |
| City | GREAT BARRINGTON | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 01230 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $1,377,143 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.CHARLEYSFUND.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2004 | FormationYr |
| Legal Domicile State | MA | LegalDomicileStateCd |
| Activity Or Mission | TO ACCELERATE THE DEVELOPMENT OF LIFE-SAVING TREATMENTS FOR DUCHENNE MUSCULAR DYSTROPHY "DMD" | ActivityOrMissionDesc |
| Voting Members Governing Body | 8 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 4 | VotingMembersIndependentCnt |
| Total Employee | 4 | TotalEmployeeCnt |
| Total Volunteers | 8 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $2,082,116 | PYContributionsGrantsAmt |
| CY Contributions Grants | $1,178,574 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $100,039 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $14,707 | PYInvestmentIncomeAmt |
| CY Investment Income | $2,751 | CYInvestmentIncomeAmt |
| PY Other Revenue | $253 | PYOtherRevenueAmt |
| CY Other Revenue | $1,316 | CYOtherRevenueAmt |
| PY Total Revenue | $2,197,115 | PYTotalRevenueAmt |
| CY Total Revenue | $1,182,641 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $1,511,340 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $1,328,648 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $521,578 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $468,424 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $244,312 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $243,521 | PYOtherExpensesAmt |
| CY Other Expenses | $105,149 | CYOtherExpensesAmt |
| PY Total Expenses | $2,276,439 | PYTotalExpensesAmt |
| CY Total Expenses | $1,902,221 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$79,324 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$719,580 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $5,842,303 | TotalAssetsBOYAmt |
| Total Assets EOY | $4,987,686 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $372,292 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $237,253 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $5,470,011 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $4,750,433 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | CHARLEY'S FUND'S SINGULAR MISSION IS TO SUPPORT THE DEVELOPMENT OF TREATMENTS AND A CURE FOR DUCHENNE MUSCULAR DYSTROPHY (DMD). WE IDENTIFY AND DIRECT FUNDING TO THE MOST COMPELLING RESEARCH AND TREATMENT PROGRAMS RELATED TO DMD AND, (CONT. ON SCH. O.) | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $1,339,815 | ExpenseAmt |
| Grant | $1,200,000 | GrantAmt |
| Desc | SEE SCHEDULE O | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $204,075 | ExpenseAmt |
| Grant | $128,648 | GrantAmt |
| Desc | SEE SCHEDULE O | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $1,543,890 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | 0 | 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 | Yes (1) | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | Yes (1) | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | 0 | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | Yes (1) | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | 0 | ForeignActivitiesInd |
| More Than5000 K To Org | 0 | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | 0 | 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 | Yes (1) | DisregardedEntityInd |
| Related Entity | Yes (1) | RelatedEntityInd |
| Related Organization Ctrl Ent | Yes (1) | RelatedOrganizationCtrlEntInd |
| Transaction With Control Ent | 0 | TransactionWithControlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 7 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 4 | 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 |
| DAF Excess Business Holdings | 0 | DAFExcessBusinessHoldingsInd |
| Taxable Distributions | 0 | TaxableDistributionsInd |
| Distribution To Donor | 0 | DistributionToDonorInd |
| 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 | 8 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 4 | 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 | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | 0 | 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 | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | SARAH DONALDSONTHE FUND | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 4135280400 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 635 MAIN ST STE 3 | AddressLine1Txt |
| City | GREAT BARRINGTON | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 01230 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (9 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Key EmployeeKeyEmployeeInd |
|---|---|---|---|---|---|---|---|
| BENJAMIN SECKLER MD | |||||||
| BOARD CHAIRMAN | 15.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| EARL KRAMER | |||||||
| TREASURER | 2.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| KAREN CLIMO | |||||||
| CLERK | 2.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| KATHE KRAMER CHASE | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| RANDY REIFF | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| TRACY KRAMER SECKLER | |||||||
| CO-FOUNDER & CEO | 40.00 | Yes (X) | Yes (X) | $29,835 | $0 | $0 | |
| ELLEN WILNER | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| MARK AVAGLIANO | |||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | ||
| LAURA DALLE PAZZE | |||||||
| PRESIDENT & COO | 55.00 | $231,767 | $0 | $6,792 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $261,602 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $6,792 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 1 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| Government Grants | $69,776 | GovernmentGrantsAmt |
| All Other Contributions | $1,108,798 | AllOtherContributionsAmt |
| Noncash Contributions | $193,813 | NoncashContributionsAmt |
| Total Contributions | $1,178,574 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $2,547 | TotalRevenueColumnAmt |
| Exclusion | $2,547 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $194,017 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $193,813 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $204 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $204 | TotalRevenueColumnAmt |
| Exclusion | $204 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Sales Of Inventory | $1,416 | GrossSalesOfInventoryAmt |
| Cost Of Goods Sold | $689 | CostOfGoodsSoldAmt |
Net Income Or Loss NetIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $727 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $727 | RelatedOrExemptFuncIncomeAmt |
Other Revenue Misc OtherRevenueMiscGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| OTHER | 900099 | $500 | $500 |
| GAIN ON INVESTEMNT IN LLC | 900099 | $89 | $89 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $589 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,182,641 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $1,316 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $2,751 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,328,648 | TotalAmt |
| Program Services | $1,328,648 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $268,394 | TotalAmt |
| Program Services | $108,619 | ProgramServicesAmt |
| Management And General | $45,164 | ManagementAndGeneralAmt |
| Fundraising | $114,611 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $153,500 | TotalAmt |
| Program Services | $63,030 | ProgramServicesAmt |
| Management And General | $25,628 | ManagementAndGeneralAmt |
| Fundraising | $64,842 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $20,440 | TotalAmt |
| Program Services | $3,611 | ProgramServicesAmt |
| Management And General | $4,477 | ManagementAndGeneralAmt |
| Fundraising | $12,352 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $26,090 | TotalAmt |
| Program Services | $9,058 | ProgramServicesAmt |
| Management And General | $5,512 | ManagementAndGeneralAmt |
| Fundraising | $11,520 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,299 | TotalAmt |
| Program Services | $557 | ProgramServicesAmt |
| Management And General | $715 | ManagementAndGeneralAmt |
| Fundraising | $27 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,306 | TotalAmt |
| Program Services | $86 | ProgramServicesAmt |
| Management And General | $22,220 | ManagementAndGeneralAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $397 | TotalAmt |
| Management And General | $397 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,360 | TotalAmt |
| Program Services | $742 | ProgramServicesAmt |
| Fundraising | $1,618 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $20,248 | TotalAmt |
| Program Services | $1,794 | ProgramServicesAmt |
| Management And General | $1,976 | ManagementAndGeneralAmt |
| Fundraising | $16,478 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $13,459 | TotalAmt |
| Program Services | $4,669 | ProgramServicesAmt |
| Management And General | $2,637 | ManagementAndGeneralAmt |
| Fundraising | $6,153 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,878 | TotalAmt |
| Program Services | $1,813 | ProgramServicesAmt |
| Fundraising | $65 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $550 | TotalAmt |
| Program Services | $550 | ProgramServicesAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $622 | TotalAmt |
| Management And General | $622 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,706 | TotalAmt |
| Program Services | $2,236 | ProgramServicesAmt |
| Management And General | $2,235 | ManagementAndGeneralAmt |
| Fundraising | $2,235 | FundraisingAmt |
Other Expenses OtherExpensesGrp (2 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| OTHER | $20,199 | $3,352 | $2,436 | $14,411 |
| SCIENTIFIC CONSULTING | $15,125 | $15,125 |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,902,221 | TotalAmt |
| Program Services | $1,543,890 | ProgramServicesAmt |
| Management And General | $114,019 | ManagementAndGeneralAmt |
| Fundraising | $244,312 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,772 | BOYAmt |
| EOY | $1,470 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $923,480 | BOYAmt |
| EOY | $678,422 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,688,342 | BOYAmt |
| EOY | $1,087,700 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $11,137 | BOYAmt |
| EOY | $10,449 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,455 | BOYAmt |
| EOY | $5,917 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $12,078 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $10,773 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,333 | BOYAmt |
| EOY | $1,305 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,202,334 | BOYAmt |
| EOY | $3,202,423 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,450 | BOYAmt |
| EOY | $0 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,842,303 | BOYAmt |
| EOY | $4,987,686 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $27,684 | BOYAmt |
| EOY | $12,283 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $344,608 | BOYAmt |
| EOY | $224,970 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $372,292 | BOYAmt |
| EOY | $237,253 | 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 | $4,052,119 | BOYAmt |
| EOY | $3,651,675 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,417,892 | BOYAmt |
| EOY | $1,098,758 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,470,011 | BOYAmt |
| EOY | $4,750,433 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,842,303 | BOYAmt |
| EOY | $4,987,686 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$719,580 | ReconcilationRevenueExpnssAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| 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) |
|---|---|---|
| Consolidated Basis Fincl Stmt | Yes (X) | ConsolidatedBasisFinclStmtInd |
| 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 | $1,054,965 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,415,266 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $2,757,831 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $2,082,116 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,178,574 | CurrentTaxYearAmt |
| Total | $8,488,752 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,054,965 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,415,266 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $2,757,831 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $2,082,116 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,178,574 | CurrentTaxYearAmt |
| Total | $8,488,752 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $1,659,102 | SubstantialContributorsTotAmt |
| Public Support Total170 | $6,829,650 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $3,119,820 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $4,746 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $11,152 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $13,926 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $2,547 | CurrentTaxYearAmt |
| Total | $3,152,191 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus3 Years | $38 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year | $589 | CurrentTaxYearAmt |
| Total | $627 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $11,641,570 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $3,222,150 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.58670 | PublicSupportCY170Pct |
| Public Support PY170 | 0.60140 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Form990 Schedule A Part VI Form990ScheduleAPartVIGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: | FormAndLineReferenceDesc |
| Explanation | OTHER - 2017 AMOUNT: $ 38. 2020 AMOUNT: $ 500. NET GAIN LOSS ON INVESTMENTS OF LLC - 2020 AMOUNT: $ 89. | ExplanationTxt |
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 D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,417,892 | BeginningYearBalanceAmt |
| Other Expenditures | $319,134 | OtherExpendituresAmt |
| End Year Balance | $1,098,758 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,250,000 | BeginningYearBalanceAmt |
| Contributions | $979,558 | ContributionsAmt |
| Other Expenditures | $811,666 | OtherExpendituresAmt |
| End Year Balance | $1,417,892 | EndYearBalanceAmt |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $94,621 | BeginningYearBalanceAmt |
| Contributions | $1,825,000 | ContributionsAmt |
| Other Expenditures | $669,621 | OtherExpendituresAmt |
| End Year Balance | $1,250,000 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $35,000 | BeginningYearBalanceAmt |
| Contributions | $205,000 | ContributionsAmt |
| Other Expenditures | $145,379 | OtherExpendituresAmt |
| End Year Balance | $94,621 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $64,707 | BeginningYearBalanceAmt |
| Contributions | $40,000 | ContributionsAmt |
| Other Expenditures | $69,707 | OtherExpendituresAmt |
| End Year Balance | $35,000 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Term Endowment Balance EOY | 1.00000 | TermEndowmentBalanceEOYPct |
| Endowments Held Unrelated Org | 0 | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | 0 | EndowmentsHeldRelatedOrgInd |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $12,078 | OtherCostOrOtherBasisAmt |
| Depreciation | $10,773 | DepreciationAmt |
| Book Value | $1,305 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $1,305 | TotalBookValueLandBuildingsAmt |
Invst Program Related Org InvstProgramRelatedOrgGrp (5 entries)
| DescDesc | Book ValueBookValueAmt | Method ValuationMethodValuationCd |
|---|---|---|
| INVESTMENT - DMD SOLUTIONS,LLC | -$6,666 | C |
| INVESTMENT - TCW CATALYST,LLC | -$413 | C |
| INVESTMENT - WIDE VISION LLC | $125,000 | C |
| INVESTMENT - DART THERAPEUTICS | $84,502 | C |
| INVESTMENT - AKASHI THERAPEU. | $3,000,000 | C |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Program Rltd | $3,202,423 | TotalBookValueProgramRltdAmt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART V, LINE 4: | FormAndLineReferenceDesc |
| Explanation | TEMPORARILY RESTRICTED NET ASSETS CONSIST OF CONTRIBUTIONS THAT ARE RESTRICTED BY THE DONOR FOR A SPECIFIC PURPOSE OR RELATE TO FUTURE PERIODS. | ExplanationTxt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (2 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|
| UMASS MEMORIAL FOUNDATION | |||||||
| 333 SOUTH ST | SHREWSBURY | MA | 01545 | 043108190 | 501(C)(3) | $1,200,000 | RESEARCH GRANT |
| CASIMIR LLC | |||||||
| 36 CORDAGE PARK CIRCLE SUITE 300 | PLYMOUTH | MA | 02360 | 810761070 | $128,648 | RESEARCH GRANT | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 1 | Total501c3OrgCnt |
| Total Other Org | 1 | TotalOtherOrgCnt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | ALL GRANTS ARE PROVIDED UNDER CONTRACTS WITH THE GRANT RECIPIENTS. THE CONTRACTS REQUIRE GRANTEES TO MEET CERTAIN EVENT AND PERFORMANCE MILESTONES AND PERIODIC PROGRESS REPORTS TO CHARLEY'S FUND, INC. ARE REQUIRED. THE BOARD OF DIRECTORS REVIEWS AND APPROVES GRANTS ACCORDING TO THE ORGANIZATION'S POLICY ON FUNDING AND EXPENSE APPROVALS. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | LAURA DALLE PAZZE | PersonNm |
| Title | PRESIDENT & COO | TitleTxt |
| Base Compensation Filing Org | $215,294 | BaseCompensationFilingOrgAmt |
| Compensation Based On Rltd Orgs | $0 | CompensationBasedOnRltdOrgsAmt |
| Bonus Filing Organization | $16,473 | BonusFilingOrganizationAmount |
| Bonus Related Organizations | $0 | BonusRelatedOrganizationsAmt |
| Other Compensation Filing Org | $0 | OtherCompensationFilingOrgAmt |
| Other Compensation Rltd Orgs | $0 | OtherCompensationRltdOrgsAmt |
| Deferred Compensation Flng Org | $0 | DeferredCompensationFlngOrgAmt |
| Deferred Comp Rltd Orgs | $0 | DeferredCompRltdOrgsAmt |
| Nontaxable Benefits Filing Org | $6,792 | NontaxableBenefitsFilingOrgAmt |
| Nontaxable Benefits Rltd Orgs | $0 | NontaxableBenefitsRltdOrgsAmt |
| Total Compensation Filing Org | $238,559 | TotalCompensationFilingOrgAmt |
| Total Compensation Rltd Orgs | $0 | TotalCompensationRltdOrgsAmt |
| Comp Report Prior990 Filing Org | $0 | CompReportPrior990FilingOrgAmt |
| Comp Report Prior990 Rltd Orgs | $0 | CompReportPrior990RltdOrgsAmt |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 8 | ContributionCnt |
| Noncash Contributions Rpt F990 | $193,813 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV | 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 |
|---|---|
| PART III - LINE 1 | IMPORTANTLY, AMPLIFY THE IMPACT OF THAT FUNDING WITH STRATEGIC PROBLEM-SOLVING SUPPORT TO BOTH AWARDEES AND THE BROADER DMD RESEARCH COMMUNITY. TO BEAT DMD, IT'S NOT ENOUGH TO FIND THE BEST RESEARCH; WE ALSO MUST PROACTIVELY IDENTIFY AND KNOCK DOWN HURDLES THAT STAND IN THE WAY OF EFFICIENT DRUG DEVELOPMENT. SINCE INCEPTION, WE HAVE DIRECTED MORE THAN $46M IN FUNDING TO THESE EFFORTS, LEVERAGING BOTH OUR OWN FUNDING AS WELL AS FUNDING FROM OTHER DMD PATIENT ORGANIZATIONS TO IDENTIFY AND SUPPORT THE BEST SCIENCE IN PURSUIT OF TREATMENTS AND A CURE FOR DMD. IN 2020, WE DEDICATED A TOTAL OF $1,543,889 TO OUR PROGRAMMATIC EFFORTS. OF THIS, $1,328,648 WAS DEDICATED TO GRANTS AND ALLOCATIONS, AND $215,241 WAS DEDICATED TO OTHER PROGRAMMATIC EXPENSES. |
| PART III - LINE 4A | WE CONTINUED OUR SUPPORT OF THE DUCHENNE PROGRAM AT UMASS MEDICAL SCHOOL, WHICH WE CREATED IN 2018. THE PROGRAM IS POWERED BY A UNIQUE COLLABORATION AMONG THE MEDICAL, RESEARCH, AND PATIENT COMMUNITIES. FOUNDING CLINIC DIRECTOR DR. BRENDA WONG, HOST INSTITUTION UMASS MEDICAL CENTER AND MEDICAL SCHOOL, AND CHARLEY'S FUND WORK JOINTLY TO ENSURE THAT THE DUCHENNE PROGRAM - THE LARGEST DEDICATED DUCHENNE CLINIC IN THE NORTHEAST US - DELIVERS WORLD-CLASS RESULTS ON THREE KEY GOALS: 1) DELIVER COMPREHENSIVE, INTEGRATED CARE TO PATIENTS; 2) HOST CUTTING-EDGE CLINICAL TRIALS; AND 3) DRIVE ORIGINAL RESEARCH AND DISCOVERIES TO POWER THE NEXT WAVE OF BREAKTHROUGHS. THE DUCHENNE PROGRAM, NOW IN ITS THIRD YEAR, HAS NEARLY 400 PATIENTS IN ITS DIRECT CARE AND CONTINUES TO BENEFIT PATIENTS WORLDWIDE EVEN IF THEY DO NOT ENTER ITS DOORS IN PERSON THROUGH SPONSORED CLINICAL TRIALS, ORIGINAL RESEARCH, AND SHARING BEST PRACTICES IN RESEARCH AND CARE WITH THE BROADER COMMUNITY. |
| PART III - LINE 4B | THROUGH OUR IMPACT INITIATIVE, WE WORK WITH PARTNERS IN THE FIELD TO DEVELOP THEIR SCIENTIFIC PROGRAMS AND TO IDENTIFY RESEARCH ROADBLOCKS AND POTENTIAL SOLUTIONS. THE IMPACT INITIATIVE SPEEDS AND IMPROVES ALL RESEARCH - NOT JUST ONE PARTICULAR THERAPY - BY IDENTIFYING AND THEN SOLVING SYSTEMIC PROBLEMS THAT MAKE DRUG DEVELOPMENT SLOWER, MORE DIFFICULT AND MORE COSTLY. CURRENTLY, THE IMPACT INITIATIVE FOCUSES ON THREE AREAS: 1) IMPROVING OUTCOME MEASURES, 2) IMPROVING PRECLINICAL METHODS AND DECISION-MAKING, AND 3) IMPROVING THE DESIGN, EXECUTION AND ANALYSIS OF CLINICAL TRIALS FOR DMD. WE DEVELOPED THE IMPACT INITIATIVE BECAUSE RIGOROUS SCIENCE - UNDERTAKEN WITH URGENCY AND FOCUS - IS THE ONLY WAY WE GET TO THE OUTCOMES WE AND ALL DUCHENNE FAMILIES WANT: DRUGS THAT WORK, AND WORK WELL. SOLVING THESE FIELD-WIDE PROBLEMS AND IMPROVING OUR TOOLS AND RESOURCES IS AN ABSOLUTE MUST TO GET RESULTS. OUTCOME MEASURES ONE ASPECT OF THE DRUG DEVELOPMENT PROCESS THAT CONCERNS US IS THE LACK OF RELIABLE OUTCOME MEASURES THAT CAN DETERMINE THE EFFICACY OF AN INTERVENTION OVER A REASONABLY SHORT PERIOD OF TIME. IN 2020 CASIMIR, LLC CONTINUED ITS WORK TO ADDRESS THIS IMPORTANT NEED BY DEVELOPING A SERIES OF OUTCOME MEASURES DESIGNED TO QUANTIFY PATIENT QUALITY OF MOVEMENT USING VIDEOS OF BOYS WITH DMD PERFORMING DAILY TASKS. WITH OUR SUPPORT, CASMIR HAS PURSUED ACTIVITIES TO DEVELOP AND REFINE THEIR SCORING SYSTEM, AND GATHER KEY BASELINE DATA NEEDED TO DETERMINE ITS RELIABILITY AND CONCEPT VALIDITY. ALSO IN 2020, WE CONTINUED OUR SUPPORT FOR ELECTRICAL IMPEDANCE MYOGRAPHY (EIM), COLLABORATING WITH EIM FOUNDER DR. SEWARD RUTKOVE TO ASSESS ITS SUITABILITY AS AN OUTCOME MEASURE FOR DMD. EIM UTILIZES A SMALL, HAND-HELD DEVICE TO RUN A HIGH-FREQUENCY CURRENT THROUGH A MUSCLE. IT IS PAINLESS, RELATIVELY INEXPENSIVE, TAKES SECONDS TO PERFORM AND CAN BE USED ON PATIENTS OF ANY AGE. WITH OUR SUPPORT, DR. RUTKOVE HAS COMPLETED CRITICAL STUDIES TO CONFIRM EIM'S RELIABILITY, CONSISTENCY AND ABILITY TO DIFFERENTIATE HEALTHY MUSCLE FROM DISEASED MUSCLE. IN 2020, WE DID NOT PROVIDE FUNDING TO SUPPORT THIS WORK BUT DID DEDICATE STAFF TIME AND GUIDANCE AS WE WORKED WITH DR. RUTKOVE TO HELP OTHER PARTIES INCLUDING LABS WE COLLABORATE WITH IN ANOTHER ONE OF OUR PROGRAMS ADOPT THE APPLICATION OF EIM. WE SUPPORTED THEIR EFFORTS TO RECRUIT PARTICIPANTS FOR ONGOING DATA COLLECTION. PRECLINICAL METHODS ONE MAJOR REASON WE HAVE TROUBLE TRANSLATING PROMISING RESEARCH RESULTS INTO ACTUAL THERAPIES IS THE SHORTCOMINGS OF HOW PRECLINICAL METHODS AND MODELS ARE USED BY DMD RESEARCHERS. OUR "OF MICE AND MEASURES" PROGRAM (OMAM) IS A COLLABORATIVE, ONGOING EFFORT THAT BRINGS TOGETHER EXPERTS FROM ACADEMIA AND INDUSTRY TO IMPROVE THE DECISION-MAKING PROCESS FOR WHICH DRUGS SHOULD ADVANCE TO CLINICAL TESTING. TO BETTER CHARACTERIZE KEY DMD MODELS WE ARE FUNDING A NATURAL HISTORY STUDY AT LEIDEN UNIVERSITY MEDICAL CENTER IN THE NETHERLANDS AND UNIVERSITA DEGLI STUDI DI BARI IN ITALY. THE STUDY IS DESIGNED TO GATHER DATA AND EXPERIENCE THAT CAN HELP DEVELOP BETTER GUIDANCE ON WHEN AND HOW TO DESIGN PRECLINICAL RESEARCH WITH THESE MODELS, AS WELL AS TO UNEARTH DISCREPANCIES IN THE PROCESSES DIFFERENT LABS UNDERTAKE AND THEN PUBLICIZE THE BEST METHODOLOGY TO ENABLE RELIABLE, CONSISTENT RESULTS. CLINICAL TRIALS THE COLLABORATIVE TRAJECTORY ANALYSIS PROJECT (CTAP) IS A COLLABORATIVE EFFORT AMONG KEY STAKEHOLDERS IN THE INDUSTRY, ACADEMIC, AND PATIENT COMMUNITIES TO IMPROVE THE WAY WE DESIGN, EXECUTE, AND ANALYZE CLINICAL TRIALS IN DUCHENNE. IT MAKES USE OF A GROWING BODY OF DMD NATURAL HISTORY AND CLINICAL TRIAL DATA AND CUTTING-EDGE BIOSTATISTICAL ANALYSIS APPROACHES TO IMPROVE OUR UNDERSTANDING OF THE NATURAL HISTORY OF DUCHENNE AND THUS, HOW SPONSORS CAN BETTER DESIGN TRIALS TO IDENTIFY WHEN THEIR TREATMENT SUCCEEDS IN CHANGING THAT NATURAL HISTORY. CTAP WORKS TO PROVIDE 1) ONGOING INVESTIGATION AND PUBLICATION ON KEY QUESTIONS FACING THE FIELD AND IMPACTING CLINICAL TRIAL DESIGN, AND 2) TARGETED SUPPORT FOR SPONSORS DESIGNING AND RUNNING TRIALS TODAY. TO SUPPORT CTAP'S WORK, CHARLEY'S FUND PROVIDES BOTH FUNDING AND ONGOING ADVICE AND GUIDANCE IN ROLES ON THE JOINT STEERING AND COMMUNICATIONS COMMITTEES. IN 2020, ONE CRITICAL RELEASE WAS CTAP'S PUBLICATION DOCUMENTING THE RESULTS OF A STUDY TO ASSESS WHETHER NATURAL HISTORY DATA CAN BE USED TO SUPPLEMENT OR REPLACE PLACEBO ARMS IN CLINICAL TRIALS. |
| FORM 990, PART VI, SECTION A, LINE 2 | BENJAMIN SECKLER, MD (BOARD CHAIRMAN), IS HUSBAND TO TRACY KRAMER SECKLER (BOARD MEMBER). EARL KRAMER (TREASURER), IS FATHER TO TRACY KRAMER SECKLER (BOARD MEMBER) AND KATHE KRAMER CHASE (BOARD MEMBER). KATHE KRAMER CHASE (BOARD MEMBER), AND TRACY KRAMER SECKLER (BOARD MEMBERS), ARE SISTERS. |
| FORM 990, PART VI, SECTION B, LINE 11B | NO REVIEW WAS OR WILL BE CONDUCTED. |
| FORM 990, PART VI, SECTION B, LINE 12C | OFFICERS, DIRECTORS AND KEY EMPLOYEES MUST REVIEW THE POLICY ANNUALLY AND SIGN A DECLARATION THAT THEY HAVE COMPLIED WITH THE POLICY. |
| FORM 990, PART VI, SECTION B, LINE 15 | COMPENSATION OF TOP MANAGEMENT AND OFFICERS OF THE ORGANIZATION IS DEVELOPED IN CONSIDERATION OF PERFORMANCE AND REVIEW OF RELEVANT COMPETITIVE BENCHMARKS AND SUBMITTED TO FINANCE BOARD MEMBERS FOR APPROVAL. |
| FORM 990, PART VI, SECTION C, LINE 19 | THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST. |
Schedule R IRS990ScheduleR
Id Disregarded Entities IdDisregardedEntitiesGrp
Disregarded Entity Name DisregardedEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CHARLEY'S FUND VENTURES LLC | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 635 MAIN STREET | AddressLine1Txt |
| City | GREAT BARRINGTON | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 01230 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 275009330 | EIN |
| Primary Activities | FUND RAISING | PrimaryActivitiesTxt |
| Legal Domicile State | MA | LegalDomicileStateCd |
| Total Income | $0 | TotalIncomeAmt |
| End Of Year Assets | $3,085,599 | EndOfYearAssetsAmt |
| Direct Controlling NA | N/A | DirectControllingNACd |
Id Related Org Txbl Partnership IdRelatedOrgTxblPartnershipGrp (4 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | EINEIN | Primary ActivitiesPrimaryActivitiesTxt | Legal Domicile StateLegalDomicileStateCd | Direct Controlling NADirectControllingNACd | Predominant Income TypePredominantIncomeTypeTxt | Share Of EOY AssetsShareOfEOYAssetsAmt | Disproportionate AllocationsDisproportionateAllocationsInd | General Or Managing PartnerGeneralOrManagingPartnerInd | Share Of Total IncomeShareOfTotalIncomeAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| WIDE VISION DMD CAPITAL LLC | ||||||||||||
| 2266 WEST END | NEW YORK | NY | 10025 | 202014968 | INVESTMENT | MA | N/A | RELATED | $125,000 | 0 | 0 | |
| DMD SOLUTIONS LLC | ||||||||||||
| 635 MAIN STREET | GREAT BARRINGTON | MA | 01230 | 271107747 | INVESTMENT | MA | N/A | RELATED | -$6,666 | 0 | 0 | $88 |
| TCW CATALYST LLC | ||||||||||||
| 4904 MERILANE AVE | EDINA | MN | 55436 | 208875302 | INVESTMENT | MN | N/A | RELATED | -$413 | 0 | 0 | $1 |
| DART THERAPEUTICS LLC | ||||||||||||
| 635 MAIN STREET | GREAT BARRINGTON | MA | 01230 | 900600955 | INVESTMENT | MA | N/A | RELATED | $84,502 | 0 | 0 | |
Id Related Org Txbl Corp Tr IdRelatedOrgTxblCorpTrGrp
Related Organization Name RelatedOrganizationName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | AKASHI THERAPEUTICS INC | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 245 FIRST ST 18TH FLOOR | AddressLine1Txt |
| City | CAMBRIDGE | CityNm |
| State Abbreviation | MA | StateAbbreviationCd |
| ZIP | 02142 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Primary Activities | DRUG DEVELOPMENT | PrimaryActivitiesTxt |
| Legal Domicile State | MA | LegalDomicileStateCd |
Direct Controlling Entity Name DirectControllingEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CHARLEY'S FUND | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Entity Type | C | EntityTypeTxt |
| Share Of EOY Assets | $3,000,000 | ShareOfEOYAssetsAmt |
| Controlled Organization | 0 | ControlledOrganizationInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Receipt Of Int Annts Rnts Rylts | 0 | ReceiptOfIntAnntsRntsRyltsInd |
| Gift Grnt Or Cap Contri To Oth Org | 0 | GiftGrntOrCapContriToOthOrgInd |
| Gift Grnt Cap Contri From Oth Org | 0 | GiftGrntCapContriFromOthOrgInd |
| Loans Or Guarantees To Other Org | 0 | LoansOrGuaranteesToOtherOrgInd |
| Loans Or Guarantees From Oth Org | 0 | LoansOrGuaranteesFromOthOrgInd |
| Div Related Organization | 0 | DivRelatedOrganizationInd |
| Asset Sale To Other Org | 0 | AssetSaleToOtherOrgInd |
| Asset Purchase From Other Org | 0 | AssetPurchaseFromOtherOrgInd |
| Asset Exchange | 0 | AssetExchangeInd |
| Rental Of Facilities To Oth Org | 0 | RentalOfFacilitiesToOthOrgInd |
| Rental Of Fclts From Oth Org | 0 | RentalOfFcltsFromOthOrgInd |
| Perform Of Services For Oth Org | 0 | PerformOfServicesForOthOrgInd |
| Perform Of Services By Other Org | 0 | PerformOfServicesByOtherOrgInd |
| Sharing Of Facilities | 0 | SharingOfFacilitiesInd |
| Paid Employees Sharing | 0 | PaidEmployeesSharingInd |
| Reimbursement Paid To Other Org | 0 | ReimbursementPaidToOtherOrgInd |
| Reimbursement Paid By Other Org | 0 | ReimbursementPaidByOtherOrgInd |
| Transfer To Other Org | 0 | TransferToOtherOrgInd |
| Transfer From Other Org | 0 | TransferFromOtherOrgInd |
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