FURP.ORG / PUBLIC DATA EXPLORER

ALPORT SYNDROME FOUNDATION INC: Form 990, tax year 2021

View the entire original 990 at ProPublica ↗

Organization
ALPORT SYNDROME FOUNDATION INC (EIN 20-8237159)
Tax period
2021-01-01 to 2021-12-31
Filed
2022-07-10
IRS object ID
202201929349300100
Schema version
2021v4.2
Source
Download XML · Original 990 at ProPublica

Every field in the e-filed return. Faint text is the IRS element name, for citing.

Return header ReturnHeader

FieldValueIRS element (for citing)
Return2022-07-10T07:33:05-00:00ReturnTs
Tax Period End2021-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN822851604PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1SECHLER MORGAN CPAS PLLCBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line12418 W BARROW DRIVEAddressLine1Txt
CityCHANDLERCityNm
State AbbreviationAZStateAbbreviationCd
ZIP85224ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2021-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN208237159EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1ALPORT SYNDROME FOUNDATION INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlALPOBusinessNameControlTxt
Phone6093047078PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO BOX 4130AddressLine1Txt
CitySCOTTSDALECityNm
State AbbreviationAZStateAbbreviationCd
ZIP852614130ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonMARTIN DUNLEAVYPersonNm
Person TitleTREASURERPersonTitleTxt
Phone6093047078PhoneNum
Signature2022-07-05SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstMARTINPersonFirstNm
Person LastDUNLEAVYPersonLastNm
FieldValueIRS element (for citing)
SSNXXX-XX-XXXXSSN

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonKRISTINA MORGAN CPAPreparerPersonNm
PTINP01370742PTIN
Phone6022302700PhoneNum
Preparation2022-07-05PreparationDt

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

FieldValueIRS element (for citing)
Trusted Customer2TrustedCustomerCd
Authentication Assurance LevelAAL1AuthenticationAssuranceLevelCd
Identity Assurance LevelIAL1IdentityAssuranceLevelCd
FieldValueIRS element (for citing)
Tax2021TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerANDREW KRONENBERGPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO Box 4130AddressLine1Txt
CityScottsdaleCityNm
State AbbreviationAZStateAbbreviationCd
ZIP85261ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$993,526GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.ALPORTSYNDROME.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2007FormationYr
Legal Domicile StateAZLegalDomicileStateCd
Activity Or MissionTO IMPROVE THE LIVES OF THOSE AFFECTED BY ALPORT SYNDROME THROUGH EDUCATION, EMPOWERMENT, ADVOCACY, AND FUNDING RESEARCH. THE FOUNDATIONS VISION IS TO MAKE ALPORT SYNDROME A TREATABLE DISEASE AND FIND A CURE.ActivityOrMissionDesc
Voting Members Governing Body7VotingMembersGoverningBodyCnt
Voting Members Independent7VotingMembersIndependentCnt
Total Employee2TotalEmployeeCnt
Total Volunteers282TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$738,310PYContributionsGrantsAmt
CY Contributions Grants$993,479CYContributionsGrantsAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$707PYInvestmentIncomeAmt
CY Investment Income$47CYInvestmentIncomeAmt
PY Other Revenue-$465PYOtherRevenueAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$738,552PYTotalRevenueAmt
CY Total Revenue$993,526CYTotalRevenueAmt
PY Grants And Similar Paid$167,289PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$163,500CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$73,636PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$85,258CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$28,843CYTotalFundraisingExpenseAmt
PY Other Expenses$197,325PYOtherExpensesAmt
CY Other Expenses$229,262CYOtherExpensesAmt
PY Total Expenses$438,250PYTotalExpensesAmt
CY Total Expenses$478,020CYTotalExpensesAmt
PY Revenues Less Expenses$300,302PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$515,506CYRevenuesLessExpensesAmt
Total Assets BOY$1,307,819TotalAssetsBOYAmt
Total Assets EOY$1,762,638TotalAssetsEOYAmt
Total Liabilities BOY$78,603TotalLiabilitiesBOYAmt
Total Liabilities EOY$17,916TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$1,229,216NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$1,744,722NetAssetsOrFundBalancesEOYAmt
MissionTHE FOUNDATION WAS CREATED TO EDUCATE AND SUPPORT PATIENTS AND FAMILIES THAT HAVE BEEN AFFECTED BY THIS GENETIC KIDNEY DISEASE WITH A GOAL OF FUNDING RESEARCH, TO FIND MORE EFFECTIVE TREATMENT PROTOCOLS AND TO ULTIMATELY FIND A CURE.MissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$208,256ExpenseAmt
Grant$5,500GrantAmt
DescSTRENGTHENED AND EXPANDED PATIENT RESOURCES 1 ADDED A THIRD STAFF MEMBER, A PATIENT ENGAGEMENT COORDINATOR, TO ADDRESS THE NEEDS OF OUR GROWING PATIENT COMMUNITY. 2 ESTABLISHED AN EMERGING LEADERSHIP COUNCIL OF VOLUNTEERS TO ADDRESS THE UNMET NEEDS OF PATIENTS AGES 25-35. THE COUNCILS FIRST PROJECT WAS THE CREATION OF A DIGITAL, DOWNLOADABLE PATIENT GUIDE, WHICH IS NOW AVAILABLE IN ENGLISH AND SPANISH. 3 COMPLETED AN 18-MONTH-LONG PROJECT DOCUMENTING THE INSIGHTS AND EXPERIENCES OF 25 PEDIATRIC ALPORT PATIENTS, CULMINATING IN THE PEDIATRIC ALPORT INSIGHT REPORT. THE REPORT IS DESIGNED TO SUPPORT CLINICIANS AND FAMILIES AND ADDRESS BOTH THE PHYSICAL AND PSYCHOSOCIAL CHALLENGES OF GROWING UP WITH ALPORT SYNDROME. 4 CREATED AND DISTRIBUTED, ANNIE HAS ALPORT SYNDROME, AN EDUCATIONAL CHILDRENS COLORING BOOK TO HELP FAMILIES TALK ABOUT THIS RARE DISEASE WITH THEIR CHILDREN. 5 IMPLEMENTED A NEW WAY TO CONNECT PATIENTS THROUGH ALPORT DIRECT CONNECT VIRTUAL MEETINGS FOR SUBGROUPS OF PATIENTS AGES 18-35, 35-50, 50, AS WELL AS POST-TRANSPLANT-FOCUSED MEETINGS.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$194,500ExpenseAmt
Grant$158,000GrantAmt
DescADVANCED CRITICAL RESEARCH PROVIDED TWO VALUABLE RESEARCH GRANTS 1 PROOF-OF-CONCEPT GENE THERAPY DR. JEFF MINER, WASHINGTON UNIVERSITY IN ST. LOUIS AND HEARING LOSS DR. FELIPE SANTOS, MASSACHUSETTS EYE AND EAR INSTITUTE. 2 ESTABLISHED A SCIENTIFIC ADVISORY RESEARCH NETWORK COMPRISED OF 8 INTERNATIONAL EXPERTS IN ALPORT SYDROME WORKING COLLABORATIVELY TO STRATEGICALLY GUIDE ASF ON ACHIEVING ITS RESEARCH INVESTMENT OBJECTIVES. 3 PARTNERED WITH THE NATIONAL KIDNEY FOUNDATION TO DEVELOP THE NKF PATIENT NETWORK-ALPORT SYNDROME, A NEW REGISTRY FOCUSED ON CAPTURING CRITICAL NATURAL HISTORY DATA ON ALPORT PATIENTS, INCLUDING UNDERSTUDIED ASPECTS OF OUR RARE DISEASE TO LAUNCH EARLY 2022. 4 IMPLEMENTED A YEAR-LONG DIAGNOSIS STORIES PATIENT SURVEY TO BETTER UNDERSTAND THE PREVALENCE OF MISDIAGNOSIS AND TO COLLECT DATA POINTS FOR GAINING AN ACCURATE DIAGNOSIS, WITH 350 RESPONSES AS OF DECEMBER 2021. THE FIRST-ROUND REPORT WAS RELEASED MID-YEAR, ALONG WITH A VIDEO COMPANION PIECE FOCUSED ON THE EXPERIENCES OF FEMALE PATIENTS.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$402,756TotalProgramServiceExpensesAmt
Described In Section501c3Yes (true)DescribedInSection501c3Ind
Schedule B RequiredYes (true)ScheduleBRequiredInd
Political Campaign ActyfalsePoliticalCampaignActyInd
Lobbying ActivitiesfalseLobbyingActivitiesInd
Subject To Proxy TaxfalseSubjectToProxyTaxInd
Donor Advised FundfalseDonorAdvisedFundInd
Conservation EasementsfalseConservationEasementsInd
Collections Of ArtfalseCollectionsOfArtInd
Credit CounselingfalseCreditCounselingInd
Donor Rstr Or Quasi EndowmentsYes (true)DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentfalseReportLandBuildingEquipmentInd
Report Investments Other SecfalseReportInvestmentsOtherSecInd
Report Program Related InvstfalseReportProgramRelatedInvstInd
Report Other AssetsfalseReportOtherAssetsInd
Report Other LiabilitiesfalseReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (true)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (true)IndependentAuditFinclStmtInd
Consolidated Audit Fincl StmtfalseConsolidatedAuditFinclStmtInd
School OperatingfalseSchoolOperatingInd
Foreign OfficefalseForeignOfficeInd
Foreign ActivitiesfalseForeignActivitiesInd
More Than5000 K To OrgfalseMoreThan5000KToOrgInd
More Than5000 K To IndividualsfalseMoreThan5000KToIndividualsInd
Professional FundraisingfalseProfessionalFundraisingInd
Fundraising ActivitiesfalseFundraisingActivitiesInd
Gaming ActivitiesfalseGamingActivitiesInd
Operate HospitalfalseOperateHospitalInd
Grants To OrganizationsYes (true)GrantsToOrganizationsInd
Grants To IndividualsYes (true)GrantsToIndividualsInd
Schedule J RequiredfalseScheduleJRequiredInd
Tax Exempt BondsfalseTaxExemptBondsInd
Engaged In Excess Benefit TransfalseEngagedInExcessBenefitTransInd
PY Excess Benefit TransfalsePYExcessBenefitTransInd
Loan OutstandingfalseLoanOutstandingInd
Grant To Related PersonfalseGrantToRelatedPersonInd
Business Rln With Org MemfalseBusinessRlnWithOrgMemInd
Business Rln With Fam MemfalseBusinessRlnWithFamMemInd
Business Rln With35 Ctrl EntYes (true)BusinessRlnWith35CtrlEntInd
Deductible Non Cash ContrifalseDeductibleNonCashContriInd
Deductible Art ContributionfalseDeductibleArtContributionInd
Terminate OperationsfalseTerminateOperationsInd
Partial LiquidationfalsePartialLiquidationInd
Disregarded EntityfalseDisregardedEntityInd
Related EntityfalseRelatedEntityInd
Related Organization Ctrl EntfalseRelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd OrgfalseTrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted PrtshpfalseActivitiesConductedPrtshpInd
Schedule O RequiredYes (true)ScheduleORequiredInd
IRP Document6IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (true)BackupWthldComplianceInd
Employee2EmployeeCnt
Employment Tax Returns FiledYes (true)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over LimitfalseUnrelatedBusIncmOverLimitInd
Foreign Financial AccountfalseForeignFinancialAccountInd
Prohibited Tax Shelter TransfalseProhibitedTaxShelterTransInd
Taxable Party NotificationfalseTaxablePartyNotificationInd
Nondeductible ContributionsfalseNondeductibleContributionsInd
Quid Pro Quo ContributionsfalseQuidProQuoContributionsInd
Form8282 Property Disposed OffalseForm8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft CntrctfalseRcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft CntrctfalsePayPremiumsPrsnlBnftCntrctInd
Indoor Tanning ServicesfalseIndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht PymtfalseSubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst IncfalseSubjectToExcsTaxNetInvstIncInd
Excs Tax Sect4951 Or4952 Or4953falseExcsTaxSect4951Or4952Or4953Ind
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members7GoverningBodyVotingMembersCnt
Independent Voting Member7IndependentVotingMemberCnt
Family Or Business RlnfalseFamilyOrBusinessRlnInd
Delegation Of Mgmt DutiesYes (true)DelegationOfMgmtDutiesInd
Change To Org DocumentsfalseChangeToOrgDocumentsInd
Material Diversion Or MisusefalseMaterialDiversionOrMisuseInd
Members Or StockholdersfalseMembersOrStockholdersInd
Election Of Board MembersfalseElectionOfBoardMembersInd
Decisions Subject To ApprovafalseDecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (true)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (true)MinutesOfCommitteesInd
Officer Mailing AddressfalseOfficerMailingAddressInd
Local ChaptersfalseLocalChaptersInd
Form990 Provided To Gvrn BodyYes (true)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (true)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (true)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (true)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (true)WhistleblowerPolicyInd
Document Retention PolicyYes (true)DocumentRetentionPolicyInd
Compensation Process CEOYes (true)CompensationProcessCEOInd
Compensation Process OtherfalseCompensationProcessOtherInd
Investment In Joint VenturefalseInvestmentInJointVentureInd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldUTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1PREMIUM ORGANIZATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone6028402900PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line18001 E VIA MARINAAddressLine1Txt
CitySCOTTSDALECityNm
State AbbreviationAZStateAbbreviationCd
ZIP85258ZIPCd
FieldValueIRS element (for citing)
No Listed Persons CompensatedYes (X)NoListedPersonsCompensatedInd

Form990 Part VII Section A Form990PartVIISectionAGrp (8 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmt
ANDREW KRONENBERG
CHAIR006.00Yes (X)Yes (X)$0$0$0
RYAN LINDER
SECRETARY002.00Yes (X)Yes (X)$0$0$0
MARTIN DUNLEAVY
TREASURER005.00Yes (X)Yes (X)$0$0$0
SHARON LAGAS
CO-FOUNDER PAST CHAIR004.00Yes (X)Yes (X)$0$0$0
ANDRE WEINSTOCK
DIRECTOR008.00Yes (X)$0$0$0
JANINE REED
DIRECTOR006.00Yes (X)$0$0$0
PHILLIP KUMNICK
DIRECTOR002.00Yes (X)$0$0$0
LISA BONEBRAKE
EXECUTIVE DIRECTOR040.00Yes (X)$0$0$0
FieldValueIRS element (for citing)
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KfalseTotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
Federated Campaigns$5,826FederatedCampaignsAmt
All Other Contributions$987,653AllOtherContributionsAmt
Total Contributions$993,479TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$47TotalRevenueColumnAmt
Exclusion$47ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$993,526TotalRevenueColumnAmt
Exclusion$47ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$158,000TotalAmt
Program Services$158,000ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$5,500TotalAmt
Program Services$5,500ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$78,939TotalAmt
Program Services$62,046ProgramServicesAmt
Management And General$9,275ManagementAndGeneralAmt
Fundraising$7,618FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$60TotalAmt
Program Services$47ProgramServicesAmt
Management And General$7ManagementAndGeneralAmt
Fundraising$6FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$6,259TotalAmt
Program Services$4,920ProgramServicesAmt
Management And General$735ManagementAndGeneralAmt
Fundraising$604FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$90,343TotalAmt
Program Services$58,723ProgramServicesAmt
Management And General$27,103ManagementAndGeneralAmt
Fundraising$4,517FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$22,100TotalAmt
Program Services$18,550ProgramServicesAmt
Management And General$1,273ManagementAndGeneralAmt
Fundraising$2,277FundraisingAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
FieldValueIRS element (for citing)
Fees For Services Prof FundraisingFeesForServicesProfFundraising

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$19,729TotalAmt
Program Services$19,259ProgramServicesAmt
Management And General$258ManagementAndGeneralAmt
Fundraising$212FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$7,099TotalAmt
Fundraising$7,099FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$21,523TotalAmt
Program Services$10,548ProgramServicesAmt
Management And General$5,955ManagementAndGeneralAmt
Fundraising$5,020FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$32,785TotalAmt
Program Services$32,339ProgramServicesAmt
Management And General$245ManagementAndGeneralAmt
Fundraising$201FundraisingAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$22,327TotalAmt
Program Services$22,327ProgramServicesAmt

Interest InterestGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Payments To Affiliates PaymentsToAffiliatesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$9,096TotalAmt
Program Services$7,149ProgramServicesAmt
Management And General$1,069ManagementAndGeneralAmt
Fundraising$878FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$4,260TotalAmt
Program Services$3,348ProgramServicesAmt
Management And General$501ManagementAndGeneralAmt
Fundraising$411FundraisingAmt

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$478,020TotalAmt
Program Services$402,756ProgramServicesAmt
Management And General$46,421ManagementAndGeneralAmt
Fundraising$28,843FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,021,874BOYAmt
EOY$1,444,390EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$243,543BOYAmt
EOY$243,568EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$18,324BOYAmt
EOY$21,146EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
EOY$1,530EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$2,967BOYAmt
EOY$3,490EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
BOY$21,111BOYAmt
EOY$48,514EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$1,307,819BOYAmt
EOY$1,762,638EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$16,103BOYAmt
EOY$17,916EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$62,500BOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$78,603BOYAmt
EOY$17,916EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,100,012BOYAmt
EOY$1,443,264EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$129,204BOYAmt
EOY$301,458EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,229,216BOYAmt
EOY$1,744,722EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,307,819BOYAmt
EOY$1,762,638EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$515,506ReconcilationRevenueExpnssAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or ReviewfalseAccountantCompileOrReviewInd
FS AuditedYes (true)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (true)AuditCommitteeInd
Federal Grant Audit RequiredfalseFederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$558,922CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$703,620CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$548,370CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$738,310CurrentTaxYearMinus1YearAmt
Current Tax Year$993,479CurrentTaxYearAmt
Total$3,542,701TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$558,922CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$703,620CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$548,370CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$738,310CurrentTaxYearMinus1YearAmt
Current Tax Year$993,479CurrentTaxYearAmt
Total$3,542,701TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,624,357SubstantialContributorsTotAmt
Public Support Total170$1,918,344PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$950CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,874CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,508CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$707CurrentTaxYearMinus1YearAmt
Current Tax Year$47CurrentTaxYearAmt
Total$6,086TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,598CurrentTaxYearMinus4YearsAmt
Total$3,598TotalAmt
FieldValueIRS element (for citing)
Total Support$3,552,385TotalSupportAmt
Gross Receipts Rltd Activities$3,488GrossReceiptsRltdActivitiesAmt
Public Support CY1700.54000PublicSupportCY170Pct
Public Support PY1700.52860PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind
Facts And Circumstances TestPart II Section A Line 1 TWO UNUSUAL GRANTS HAVE BEEN EXCLUDED FROM THE CALCULATION - 100,000 HAS BEEN EXCLUDED FROM BOTH THE 2017 COLUMN A AND THE 2018 COLUMN B.FactsAndCircumstancesTestTxt

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$129,204BeginningYearBalanceAmt
Contributions$421,146ContributionsAmt
Grants Or Scholarships$230,568GrantsOrScholarshipsAmt
Other Expenditures$18,324OtherExpendituresAmt
End Year Balance$301,458EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$20,123BeginningYearBalanceAmt
Contributions$307,458ContributionsAmt
Grants Or Scholarships$178,254GrantsOrScholarshipsAmt
Other Expenditures$20,123OtherExpendituresAmt
End Year Balance$129,204EndYearBalanceAmt

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$183,161BeginningYearBalanceAmt
Contributions$220,123ContributionsAmt
Grants Or Scholarships$275,000GrantsOrScholarshipsAmt
Other Expenditures$108,161OtherExpendituresAmt
End Year Balance$20,123EndYearBalanceAmt

CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$120,000BeginningYearBalanceAmt
Contributions$183,161ContributionsAmt
Other Expenditures$120,000OtherExpendituresAmt
End Year Balance$183,161EndYearBalanceAmt

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$20,000BeginningYearBalanceAmt
Contributions$120,000ContributionsAmt
Other Expenditures$20,000OtherExpendituresAmt
End Year Balance$120,000EndYearBalanceAmt
FieldValueIRS element (for citing)
Term Endowment Balance EOY1.00000TermEndowmentBalanceEOYPct
Endowments Held Unrelated OrgfalseEndowmentsHeldUnrelatedOrgInd
Endowments Held Related OrgfalseEndowmentsHeldRelatedOrgInd

Other Securities OtherSecuritiesGrp (2 entries)

DescDesc
Financial derivatives and other financial products
Closely-held equity interests

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescFederal income taxesDesc
FieldValueIRS element (for citing)
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$995,026TotalRevEtcAuditedFinclStmtAmt
Donated Services And Use Fclts$1,500DonatedServicesAndUseFcltsAmt
Revenue Not Reported$1,500RevenueNotReportedAmt
Revenue Subtotal$993,526RevenueSubtotalAmt
Total Revenue Per Form990$993,526TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$479,520TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$1,500DonatedServicesUseFcltsAmt
Expenses Not Reported$1,500ExpensesNotReportedAmt
Expenses Subtotal$478,020ExpensesSubtotalAmt
Total Expenses Per Form990$478,020TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (3 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
V 4THE ORGANIZATIONS DONOR RESTRICTED NET ASSETS WERE RESTRICTED FOR THE FOLLOWING TIME RESTRICTIONS ON CONTRIBUTIONS RECEIVABLE AND RESEARCH GRANTS.
X 2MANAGEMENT BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR ANY INCOME TAX POSITIONS TAKEN, AND, AS SUCH, DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. THE FOUNDATION WOULD RECOGNIZE FUTURE ACCRUED INTEREST AND PENALTIES RELATED TO UNRECOGNIZED TAX BENEFITS AND LIABILITIES IN INCOME TAX EXPENSE IF SUCH INTEREST AND PENALTIES ARE INCURRED.
X 4 bOTHER ROUNDING 1.

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (2 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
Washington University in St Louis
One Brookings DrSt LouisMO631304899430653611501c3$132,000Research genetic therapy A.S.
Massachusetts Eye & Ear Institute
243 Charles StreetBostonMA02114474262843501c3$26,000Research cause of hearing loss A.S.
FieldValueIRS element (for citing)
Total501c3 Org2Total501c3OrgCnt

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp

FieldValueIRS element (for citing)
Grant TypePaul Silver AwardGrantTypeTxt
Recipient3RecipientCnt
Cash Grant$5,500CashGrantAmt

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Part I Line 1FOR RESEARCH FUNDING, ASF USES AN APPLICATION PROCESS ALONG WITH A PANEL OF OUTSIDE REVIEWERS WHICH EVALUATE GRANT APPLICATIONS ON THE SPECIFIC AIMS OF THE PROJECT, THE PROJECTS BACKGROUND AND SIGNIFICANCE, AND THE PROJECTS RESEARCH DESIGN AND METHODS.
Part I Line 2REPORTING REQUIREMENTS - WITHIN 60 DAYS OF THE END OF THE FUNDING PERIOD, IT IS REQUIRED THAT A TYPE-WRITTEN REPORT BY THE PRINCIPAL INVESTIGATOR ON THE RESEARCH THAT RESULTED FROM THE ASF FUNDING SUMMARY WHICH CAN BE PUBLISHED BY ASF AS IS OR IN EDITED FORM MUST BE SUBMITTED. IF THE FUNDING IS FOR MORE THAN A ONE-YEAR PERIOD, THEN A TYPE-WRITTEN PROGRESS REPORT MUST BE ISSUED BY THE PRINCIPAL INVESTIGATOR AT THE END OF EACH YEAR ON THE FUNDING COMMENCEMENT DATE ANNIVERSARY AND SENT TO ASF.
Part I Line 2ACCOUNTING REQUIREMENTS - A FINAL DETAILED ACCOUNTING OF THE FUNDS SPENT IS REQUIRED TO BE SENT TO ASF WITHIN 60 DAYS OF THE END OF THE FUNDING PERIOD. IF THE FUNDING PERIOD IS LONGER THAN ONE YEAR, THEN ANNUAL FINANCIAL REPORTS MUST BE FILED WITH ASF ON THE FUNDING COMMENCEMENT DATE ANNIVERSARY. AT THE END OF THE FUNDING PERIOD, ANY UNUSED FUNDS MUST BE RETURNED TO ASF, UNLESS A LETTER EXPLAINING THE SITUATION AND REQUESTING AN EXTENSION OF THE FUNDING PERIOD WITHOUT ADDITIONAL FUNDS IS SUBMITTED AT LEAST 90 DAYS PRIOR TO THE END OF THE FUNDING PERIOD AND APPROVED BY ASF.
Part I Line 2THE PAUL SILVER ENRICHMENT AWARD PROGRAM WAS ESTABLISHED IN THE MEMORY OF AN ALPORT SYNDROME PATIENT. RECIPIENTS ARE SELECTED BY A COMMITTEE COMPRISED OF 1 BOARD MEMBER, 1 SILVER FAMILY MEMBER, AND 2 FRIENDS OF THE SILVER FAMILY. RECIPIENTS ARE SELECTED BASED ON ESSAYS AND WRITTEN APPLICATIONS. RECIPIENTS PROVIDE WRITTEN REPORTS AND A VIDEO OF HOW FUNDS WERE SPENT. FAMILY OF BOARD MEMBERS AND STAFF ARE NOT ELIGIBLE TO APPLY.
Part III Line 1COLUMN B THE NUMBER OF RECIPIENTS REFLECTS THE NUMBER OF INDIVIDUALS ASSISTED WITH SCHOLARSHIPS DURING THE YEAR.

Schedule L IRS990ScheduleL

Bus Tr Involve Interested Prsn BusTrInvolveInterestedPrsnGrp

Name Of Interested NameOfInterested

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1LBONEBRAKE LLCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Relationship DescriptionOFFICER OWNEDRelationshipDescriptionTxt
Transaction$90,343TransactionAmt
TransactionMANAGEMENT/COMMUNICATION SERVICESTransactionDesc
Sharing Of RevenuesfalseSharingOfRevenuesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePart IV Line 1FormAndLineReferenceDesc
ExplanationTHE ORGANIZATION HAS AN AGREEMENT WITH PRIMA PRONTO LLC DBA LBONEBRAKE LLC, FOR LISA BONEBRAKE TO PROVIDE EXECUTIVE DIRECTOR SERVICES TO THE ORGANIZATION. LISA IS THE SOLE OWNER OF LBONEBRAKE LLC.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part VI, Section B, Line 3THE ORGANIZATION HAS AN AGREEMENT WITH PRIMA PRONTO LLC DBA LBONEBRAKE LLC, FOR LISA BONEBRAKE TO PROVIDE EXECUTIVE DIRECTOR SERVICES TO THE ORGANIZATION. LBONEBRAKE LLC WAS PAID 90,343 FOR THE SERVICES PROVIDED DURING 2021.
Form 990, Part VI, Section B, Line 11 BTHE TREASURER OF THE ORGANIZATION DISTRIBUTES A PDF COPY OF 990 RETURN TO ALL BOARD MEMBERS FOR A REVIEW AND COMMENT PRIOR TO BEING FILED.
Form 990, Part VI, Section B, Line 12 CAT EACH BOARD AND COMMITTEE MEETING, IF THERE IS A DISCUSSION OF SELECTING OR ENGAGING A VENDOR OR SERVICE PROVIDER, ALL IN ATTENDANCE ARE ASKED TO RECUSE THEMSELVES FROM THIS DISCUSSION IF THERE COULD BE A PERCEIVED CONFLICT. ANNUALLY, THE ORGANIZATION REVIEWS AND DISCUSSES THE CONFLICT OF INTEREST POLICY AND REQUESTS THAT EACH BOARD MEMBER LIST AND ACKNOWLEDGE ANY KNOWN CONFLICTS.
Form 990, Part VI, Section B, Line 15 A BTHE BOARD MAY HIRE AND COMPENSATE INDIVIDUALS FOR NECESSARY SERVICES RENDERED TO THE ORGANIZATION SO LONG AS SUCH COMPENSATION IS REASONABLE. THE BOARD SHALL DETERMINE REASONABLE COMPENSATION AMOUNTS BASED UPON COMPENSATION PAID BY SIMILARLY SITUATED NONPROFITS FOR LIKE SERVICES. THE BOARD MAY RELY UPON SALARY STUDIES, AS WELL AS DATA REGARDING COMPENSATION PAID BY AT LEAST THREE SPECIFIC PEER ORGANIZATIONS OF SIMILAR SIZE TO DETERMINE REASONABLE COMPENSATION. THE TERMS OF SUCH COMPENSATION, INFORMATION RELIED UPON TO DETERMINE THE TERMS OF ANY COMPENSATION, AND ITS SOURCE SHALL BE RECORDED IN WRITING. AN INDIVIDUAL WHO IS A VOTING MEMBER OF THE BOARD OR A COMMITTEE WITH THE BOARD DELEGATED POWERS AND WHO RECEIVES COMPENSATION, DIRECTLY OR INDIRECTLY, FROM THE FOUNDATION FOR SERVICES IS PRECLUDED FROM PARTICIPATING IN DISCUSSIONS OR VOTES PERTAINING TO THEIR OWN COMPENSATION.
Form 990, Part VI, Section C, Line 19THE ORGANIZATION WILL PROVIDE, IN A TIMELY MANNER, FINANCIAL STATEMENTS AND GOVERNING DOCUMENTS INCLUDING ITS CONFLICT OF INTEREST POLICIES WHEN REQUESTED IN WRITING OR IN PERSON.