A FOUNDATION BUILDING STRENGTH INC: Form 990, tax year 2024
View the entire original 990 at ProPublica ↗
- Organization
- A FOUNDATION BUILDING STRENGTH INC (EIN 26-1761329)
- Tax period
- 2024-01-01 to 2024-12-31
- Filed
- 2025-10-15
- IRS object ID
- 202502889349302755
- 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 ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2025-10-15T18:53:03-04:00 | ReturnTs |
| Tax Period End | 2024-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 474306215 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Mullins PC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 7625 Wisconsin Avenue | AddressLine1Txt |
| City | Bethesda | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20814 | 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 | 261761329 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | A Foundation Building Strength Inc | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| In Care Of | % Kelly Lloyd | InCareOfNm |
| Business Name Control | AFOU | BusinessNameControlTxt |
| Phone | 4082120207 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 3825 El Camino Real | AddressLine1Txt |
| City | Palo Alto | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94306 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | KELLY LLOYD | PersonNm |
| Person Title | Treasurer | PersonTitleTxt |
| Phone | 4082120207 | PhoneNum |
| Signature | 2025-10-15 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IRS Responsible Prty Info Curr | Yes (true) | IRSResponsiblePrtyInfoCurrInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | JOHN MULLINS | PreparerPersonNm |
| PTIN | P01429307 | PTIN |
| Phone | 2027706371 | PhoneNum |
| Preparation | 2025-10-15 | PreparationDt |
| 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 | Marc Guillet | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 3825 El Camino Real | AddressLine1Txt |
| City | Palo Alto | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94306 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $1,062,932 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | buildingstrength.org | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2008 | FormationYr |
| Legal Domicile State | CA | LegalDomicileStateCd |
| Activity Or Mission | To find treatments for Nemaline Myopathy | ActivityOrMissionDesc |
| Voting Members Governing Body | 9 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 9 | VotingMembersIndependentCnt |
| Total Employee | 1 | TotalEmployeeCnt |
| Total Volunteers | 25 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $1,269,206 | PYContributionsGrantsAmt |
| CY Contributions Grants | $950,307 | CYContributionsGrantsAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $51,267 | PYInvestmentIncomeAmt |
| CY Investment Income | $110,613 | CYInvestmentIncomeAmt |
| PY Other Revenue | $140,955 | PYOtherRevenueAmt |
| CY Other Revenue | -$12,157 | CYOtherRevenueAmt |
| PY Total Revenue | $1,461,428 | PYTotalRevenueAmt |
| CY Total Revenue | $1,048,763 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $617,501 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $821,705 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $101,009 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $124,588 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $76,139 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $188,502 | PYOtherExpensesAmt |
| CY Other Expenses | $216,813 | CYOtherExpensesAmt |
| PY Total Expenses | $907,012 | PYTotalExpensesAmt |
| CY Total Expenses | $1,163,106 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $554,416 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$114,343 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $3,531,624 | TotalAssetsBOYAmt |
| Total Assets EOY | $3,358,607 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $185,612 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $128,832 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $3,346,012 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $3,229,775 | NetAssetsOrFundBalancesEOYAmt |
| Mission | To find treatments for Nemaline Myopathy | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $1,042,113 | ExpenseAmt |
| Grant | $821,705 | GrantAmt |
| Desc | The largest program services include research grants to foreign and domestic organizations advancing Nemaline Myopathy science. Domestically, grants supported the development of gene therapy for ACTA1-based Nemaline Myopathy; gene replacement and drug screening studies for KLHL40-, KLHL41-related forms; creation of patient-derived 3D muscle models to test potential treatments; maintenance of a national biobank to advance research and clinical trial readiness; and development of soft robotic garments to assist lower-limb movement and improve mobility for children with NM. Internationally, grants supported research to test therapies for KBTBD13-related Nemaline Myopathy (NEM6) using a mouse model to determine treatment timing and efficacy in preventing or reversing disease progression. | Desc |
| Total Program Service Expenses | $1,042,113 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | false | LobbyingActivitiesInd |
| Subject To Proxy Tax | false | SubjectToProxyTaxInd |
| Donor Advised Fund | false | DonorAdvisedFundInd |
| Conservation Easements | false | ConservationEasementsInd |
| Collections Of Art | false | CollectionsOfArtInd |
| Credit Counseling | false | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | false | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | false | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | false | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | false | ReportProgramRelatedInvstInd |
| Report Other Assets | false | ReportOtherAssetsInd |
| Report Other Liabilities | false | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | false | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | false | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | false | ConsolidatedAuditFinclStmtInd |
| School Operating | false | SchoolOperatingInd |
| Foreign Office | false | ForeignOfficeInd |
| Foreign Activities | Yes (true) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (true) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | false | MoreThan5000KToIndividualsInd |
| Professional Fundraising | false | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (true) | FundraisingActivitiesInd |
| Gaming Activities | false | GamingActivitiesInd |
| Operate Hospital | false | OperateHospitalInd |
| Grants To Organizations | Yes (true) | GrantsToOrganizationsInd |
| Grants To Individuals | false | GrantsToIndividualsInd |
| Schedule J Required | false | ScheduleJRequiredInd |
| Tax Exempt Bonds | false | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | false | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | false | PYExcessBenefitTransInd |
| Loan Outstanding | false | LoanOutstandingInd |
| Grant To Related Person | false | GrantToRelatedPersonInd |
| Business Rln With Org Mem | false | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | false | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | false | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | false | DeductibleNonCashContriInd |
| Deductible Art Contribution | false | DeductibleArtContributionInd |
| Terminate Operations | false | TerminateOperationsInd |
| Partial Liquidation | false | PartialLiquidationInd |
| Disregarded Entity | false | DisregardedEntityInd |
| Related Entity | false | RelatedEntityInd |
| Related Organization Ctrl Ent | false | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | false | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | false | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (true) | ScheduleORequiredInd |
| IRP Document | 7 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (true) | BackupWthldComplianceInd |
| Employee | 1 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (true) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | false | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | false | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | false | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | false | TaxablePartyNotificationInd |
| Nondeductible Contributions | false | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | false | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | false | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | false | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | false | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | false | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | false | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | false | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 9 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 9 | IndependentVotingMemberCnt |
| Family Or Business Rln | Yes (true) | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | false | DelegationOfMgmtDutiesInd |
| Change To Org Documents | false | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | false | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | false | MembersOrStockholdersInd |
| Election Of Board Members | false | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | false | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (true) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (true) | MinutesOfCommitteesInd |
| Officer Mailing Address | false | OfficerMailingAddressInd |
| Local Chapters | false | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (true) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (true) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (true) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (true) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (true) | WhistleblowerPolicyInd |
| Document Retention Policy | false | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (true) | CompensationProcessCEOInd |
| Compensation Process Other | false | CompensationProcessOtherInd |
| Investment In Joint Venture | false | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | The Organization | PersonNm |
| Phone | 4082120207 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 3825 El Camino Real | AddressLine1Txt |
| City | Palo Alto | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94306 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| No Listed Persons Compensated | Yes (X) | NoListedPersonsCompensatedInd |
Form990 Part VII Section A Form990PartVIISectionAGrp (10 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | Highest Compensated EmployeeHighestCompensatedEmployeeInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd |
|---|---|---|---|---|---|---|---|---|
| Jennifer Tozer | ||||||||
| Executive Director | 40.00 | 0.00 | Yes (X) | $115,000 | $0 | $0 | ||
| Marc Guillet | ||||||||
| President | 5.00 | 0.00 | $0 | $0 | $0 | Yes (X) | Yes (X) | |
| Lyn Baier | ||||||||
| Director | 3.00 | 0.00 | $0 | $0 | $0 | Yes (X) | ||
| Sam Lipsick | ||||||||
| Director | 3.00 | 0.00 | $0 | $0 | $0 | Yes (X) | ||
| Matt Lloyd | ||||||||
| Director | 3.00 | 0.00 | $0 | $0 | $0 | Yes (X) | ||
| Kelly Lloyd | ||||||||
| Treasurer | 5.00 | 0.00 | $0 | $0 | $0 | Yes (X) | Yes (X) | |
| Leticia Machado | ||||||||
| Director | 3.00 | 0.00 | $0 | $0 | $0 | Yes (X) | ||
| Guilherme Machado | ||||||||
| Director | 3.00 | 0.00 | $0 | $0 | $0 | Yes (X) | ||
| Boris Shimanovsky | ||||||||
| Director | 3.00 | 0.00 | $0 | $0 | $0 | Yes (X) | ||
| Sharon Shimanovsky | ||||||||
| Secretary | 5.00 | 0.00 | $0 | $0 | $0 | Yes (X) | Yes (X) | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $115,000 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $0 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 1 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | false | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | false | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
| Fundraising | $347,596 | FundraisingAmt |
| All Other Contributions | $602,711 | AllOtherContributionsAmt |
| Total Contributions | $950,307 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $110,613 | TotalRevenueColumnAmt |
| Exclusion | $110,613 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contri Rpt Fundraising Event | $347,596 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $12,352 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$12,352 | TotalRevenueColumnAmt |
| Exclusion | -$12,352 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Sales Of Inventory | $2,012 | GrossSalesOfInventoryAmt |
| Cost Of Goods Sold | $1,817 | CostOfGoodsSoldAmt |
Net Income Or Loss NetIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $195 | TotalRevenueColumnAmt |
| Exclusion | $195 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,048,763 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $98,456 | 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 | $798,905 | TotalAmt |
| Program Services | $798,905 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,800 | TotalAmt |
| Program Services | $22,800 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $115,000 | TotalAmt |
| Program Services | $74,750 | ProgramServicesAmt |
| Management And General | $11,500 | ManagementAndGeneralAmt |
| Fundraising | $28,750 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,588 | TotalAmt |
| Fundraising | $9,588 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,605 | TotalAmt |
| Management And General | $11,605 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $159,432 | TotalAmt |
| Program Services | $133,089 | ProgramServicesAmt |
| Management And General | $9,096 | ManagementAndGeneralAmt |
| Fundraising | $17,247 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $726 | TotalAmt |
| Program Services | $525 | ProgramServicesAmt |
| Management And General | $201 | ManagementAndGeneralAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $10,648 | TotalAmt |
| Program Services | $721 | ProgramServicesAmt |
| Management And General | $9,727 | ManagementAndGeneralAmt |
| Fundraising | $200 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,009 | TotalAmt |
| Program Services | $2,009 | ProgramServicesAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,314 | TotalAmt |
| Program Services | $9,314 | ProgramServicesAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,725 | TotalAmt |
| Management And General | $2,725 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (2 entries)
| DescDesc | TotalTotalAmt | FundraisingFundraisingAmt |
|---|---|---|
| Classy Fees | $19,334 | $19,334 |
| Bank Fees | $1,020 | $1,020 |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,163,106 | TotalAmt |
| Program Services | $1,042,113 | ProgramServicesAmt |
| Management And General | $44,854 | ManagementAndGeneralAmt |
| Fundraising | $76,139 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $249,975 | BOYAmt |
| EOY | $372,984 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,881,405 | BOYAmt |
| EOY | $2,243,741 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $194,143 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $46,012 | BOYAmt |
| EOY | $534,439 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $204,232 | BOYAmt |
| EOY | $13,300 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $150,000 | BOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,531,624 | BOYAmt |
| EOY | $3,358,607 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $185,612 | BOYAmt |
| EOY | $128,832 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $185,612 | BOYAmt |
| EOY | $128,832 | 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 | $3,346,012 | BOYAmt |
| EOY | $3,229,775 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,346,012 | BOYAmt |
| EOY | $3,229,775 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,531,624 | BOYAmt |
| EOY | $3,358,607 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$114,343 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | -$1,894 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | false | AccountantCompileOrReviewInd |
| FS Audited | false | FSAuditedInd |
| Federal Grant Audit Required | false | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Publicly Supported Org509a2 | Yes (X) | PubliclySupportedOrg509a2Ind |
Gifts Grants Contris Rcvd509 GiftsGrantsContrisRcvd509Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $361,591 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,126,280 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,741,351 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,269,206 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $950,307 | CurrentTaxYearAmt |
| Total | $5,448,735 | TotalAmt |
Total509 Total509Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $361,591 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,126,280 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,741,351 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,269,206 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $950,307 | CurrentTaxYearAmt |
| Total | $5,448,735 | TotalAmt |
Subst And Dsqlfy Prsns Tot SubstAndDsqlfyPrsnsTotGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $0 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $0 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $0 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $0 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $0 | CurrentTaxYearAmt |
| Total | $0 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Support Total509 | $5,448,735 | PublicSupportTotal509Amt |
Gross Investment Income509 GrossInvestmentIncome509Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus3 Years | $624 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,713 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $51,267 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $110,613 | CurrentTaxYearAmt |
| Total | $167,217 | TotalAmt |
Investment Income And UBTI InvestmentIncomeAndUBTIGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus3 Years | $624 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,713 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $51,267 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $110,613 | CurrentTaxYearAmt |
| Total | $167,217 | TotalAmt |
Total Support Calendar Year TotalSupportCalendarYearGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $361,591 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,126,904 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,746,064 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,320,473 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,060,920 | CurrentTaxYearAmt |
| Total | $5,615,952 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Support CY509 | 0.97020 | PublicSupportCY509Pct |
| Public Support PY509 | 0.98780 | PublicSupportPY509Pct |
| Investment Income CY | 0.03000 | InvestmentIncomeCYPct |
| Investment Income PY | 0.01000 | InvestmentIncomePYPct |
| Thirty Thr Pct Suprt Tests CY509 | Yes (X) | ThirtyThrPctSuprtTestsCY509Ind |
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 F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | Europe including Iceland and Greenland | RegionTxt |
| Type Of Activities Conducted | Program services | TypeOfActivitiesConductedTxt |
| Specific Services Provided | Medical Research | SpecificServicesProvidedTxt |
| Region Total Expenditures | $22,800 | RegionTotalExpendituresAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Spent | $22,800 | SubtotalSpentAmt |
| Total Spent | $22,800 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | Europe including Iceland and Greenland | RegionTxt |
| Purpose Of Grant | Medical Research | PurposeOfGrantTxt |
| Cash Grant | $22,800 | CashGrantAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 1 | Total501c3OrgCnt |
| Transfer To Foreign Corp | false | TransferToForeignCorpInd |
| Interest In Foreign Trust | false | InterestInForeignTrustInd |
| Foreign Corp Ownership | false | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | false | PassiveForeignInvestmestCoInd |
| Foreign Partnership | false | ForeignPartnershipInd |
| Boycott Countries | false | BoycottCountriesInd |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | EoY Campaign | Event1Nm |
| Gross Receipts Event1 | $200,449 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $200,449 | CharitableContriEvent1Amt |
| Other Direct Expenses Event1 | $3,835 | OtherDirectExpensesEvent1Amt |
| Event2 | LoveLiv | Event2Nm |
| Gross Receipts Event2 | $59,096 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $59,096 | CharitableContriEvent2Amt |
| Other Direct Expenses Event2 | $2,145 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 3 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $55,256 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $55,256 | CharitableContriOtherEventsAmt |
| Oth Direct Expnss Other Events | $6,372 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $314,801 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $314,801 | CharitableContributionsTotAmt |
| Oth Direct Expnss Total Events | $12,352 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $12,352 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$12,352 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (5 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|
| Brigham & Womens Hospital | |||||||
| PO Box 3887 Finance Research | Boston | MA | 022413887 | 042312909 | 501c3 | $237,267 | Research |
| University of Washington | |||||||
| Box 354966 | Seattle | WA | 98195 | 916001537 | 501c3 | $109,748 | Research |
| UC Riverside | |||||||
| 900 University Avenue Bldg 1111 | Riverside | CA | 92521 | 956006142 | 501c3 | $30,000 | Research |
| Nationwide Childrens Hospital | |||||||
| 700 Childrens Dr | Columbus | OH | 43205 | 316056230 | 501c3 | $174,037 | Research |
| Boston Childrens Hospital | |||||||
| 300 Longwood Ave | Boston | MA | 02115 | 042774441 | 501c3 | $110,000 | Research |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 5 | Total501c3OrgCnt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Officer directors etc family relationship Part VI line 2 | The Organization has three pairs of spouses on The Board. |
| Form 990 governing body review Part VI line 11 | The tax return is reviewed by the finance committee prior to filing. |
| Conflict of interest policy compliance Part VI line 12c | Board members are reminded of the importance of disclosing any potential related parties at the beginning of each board meeting. |
| CEO executive director top management comp Part VI line 15a | Compensation is reviewed by independent Board members, including the President, using comparative data from a rare disease nonprofit consultant and considering organization size and annual revenue. Approved compensation is reflected in the annual budget and formalized in the executed employment agreement, providing contemporaneous substantiation. |
| Governing documents etc available to public Part VI line 19 | Governing documents and policies are avaialble at The Organizations address upon request. |
| List of other fees for services expenses Part IX line 11g | Consulting: $144,596 Contract Labor: $9,785 Fundraising Expenses: $5,051 |