FURP.ORG / PUBLIC DATA EXPLORER

ALPORT SYNDROME FOUNDATION INC: Form 990, tax year 2018

View the entire original 990 at ProPublica ↗

Organization
ALPORT SYNDROME FOUNDATION INC (EIN 20-8237159)
Tax period
2018-01-01 to 2018-12-31
Filed
2019-11-07
IRS object ID
201943119349301814
Schema version
2018v3.1
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 ReturnHeader

FieldValueIRS element (for citing)
Return2019-11-07T10:16:44-00:00ReturnTs
Tax Period End2018-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

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 Begin2018-01-01TaxPeriodBeginDt

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
Phone4808003510PhoneNum

US Address USAddress

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

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonMARTY DUNLEAVYPersonNm
Person TitleTREASURERPersonTitleTxt
Signature2019-11-06SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonKRISTINA MORGAN CPAPreparerPersonNm
Phone6022302700PhoneNum
Preparation2019-11-07PreparationDt

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address68.226.18.216IPv4AddressTxt
FieldValueIRS element (for citing)
IP2019-11-07IPDt
IP Tm17:15:04IPTm
IP TimezoneMSIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id5E138E3DC04C7C0089134CC6E203F13F13D4A0B2AtSubmissionCreationDeviceId
At Submission Filing Device Id62E43348EE3C7DAB2011D4FB068CA8D1BCB2AB31AtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2018TaxYr
Build TS2020-03-31 21:24:44ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerSharon LagasPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line11608 E Briarwood TerraceAddressLine1Txt
CityPhoenixCityNm
State AbbreviationAZStateAbbreviationCd
ZIP85048ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$817,964GrossReceiptsAmt
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 Body8VotingMembersGoverningBodyCnt
Voting Members Independent8VotingMembersIndependentCnt
Total Employee1TotalEmployeeCnt
Total Volunteers60TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$658,922PYContributionsGrantsAmt
CY Contributions Grants$803,620CYContributionsGrantsAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$950PYInvestmentIncomeAmt
CY Investment Income$1,874CYInvestmentIncomeAmt
PY Other Revenue$4,429PYOtherRevenueAmt
CY Other Revenue$1,500CYOtherRevenueAmt
PY Total Revenue$664,301PYTotalRevenueAmt
CY Total Revenue$806,994CYTotalRevenueAmt
PY Grants And Similar Paid$102,000PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$279,500CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$120,140PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$127,674CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$2,000CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$24,633CYTotalFundraisingExpenseAmt
PY Other Expenses$205,514PYOtherExpensesAmt
CY Other Expenses$284,599CYOtherExpensesAmt
PY Total Expenses$427,654PYTotalExpensesAmt
CY Total Expenses$693,773CYTotalExpensesAmt
PY Revenues Less Expenses$236,647PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$113,221CYRevenuesLessExpensesAmt
Total Assets BOY$930,216TotalAssetsBOYAmt
Total Assets EOY$1,206,840TotalAssetsEOYAmt
Total Liabilities BOY$10,510TotalLiabilitiesBOYAmt
Total Liabilities EOY$173,913TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$919,706NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$1,032,927NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
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$275,000ExpenseAmt
Grant$275,000GrantAmt
DescCOMPETITIVE RESEARCH FUNDING PROGRAM. THE ASF RESEARCH PROGRAM IS FUNDED IN LARGE PART BY THE ANNUAL CAMPAIGN FOR HEALTHY KIDNEYS AS WELL AS OTHER FUNDRAISING EVENTS. ASF HAS DEVELOPED STRATEGIC ALLIANCES AND INTERNATIONAL PARTNERSHIPS TO INCREASE THE RESOURCES APPLIED TO FINDING NOVEL TREATMENTS AND A CURE. SINCE 2010, ASF AND ITS PARTNERS HAVE PROVIDED MORE THAN 2 MILLION DOLLARS ON RESEARCH PROJECTS FOR ALPORT SYNDROME THAT HAVE FOCUSED ON CORRECTING THE GENETIC DEFECT IN CELLS DERIVED FROM PATIENTS, BASIC SCIENCE ON THE STRUCTURES OF THE KIDNEY THAT AFFECT THE BASEMENT MEMBRANE AND DISEASE PROGRESSION, PROTEIN REPLACEMENT THERAPY, MICRORNA THERAPY, ANTIBODY THERAPY, AND DRUG REPURPOSING.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$155,819ExpenseAmt
Grant$4,500GrantAmt
DescPATIENT MEETINGS. ASF SPONSORS PATIENT MEETINGS AND CONFERENCES TO BRING THE PATIENTS AND EXPERTS TOGETHER TO EMPOWER THOSE AFFECTED BY ALPORT SYNDROME WITH INFORMATION AND SUPPORT. ASF HAS CONNECTED MORE THAN 7,000 PATIENTS, FAMILIES, RESEARCHERS AND PHYSICIANS IN AT LEAST 74 COUNTRIES. IT IS ESTIMATED THERE ARE 30,000 - 60,000 ALPORT SYNDROME PATIENTS IN THE USA, BUT THE DISEASE IS OFTEN MISDIAGNOSED OR UNDIAGNOSED UNTIL KIDNEY FAILURE IS IMMINENT. PATIENTS THEN NEED INFORMATION AND SUPPORT SWIFTLY. TEEN/ YOUNG ADULT SUPPORT PROGRAM ASF PROVIDES SPECIALIZED SUPPORT TO THIS AGE GROUP, PARTICULARLY HARD HIT BY THIS DISEASE, INCLUDING SPECIAL PROGRAMS AT FAMILY CONFERENCES, A DEDICATED FACEBOOK PAGE CALLED ALPORT AVENGERS, AND SPONSORING THE PAUL SILVER TRIBUTE AWARDS.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$177,534TotalOtherProgSrvcExpenseAmt
Total Other Prog Srvc Revenue$1,500TotalOtherProgSrvcRevenueAmt
Total Program Service Expenses$608,353TotalProgramServiceExpensesAmt
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
Temp Or Permanent EndowmentsYes (true)TempOrPermanentEndowmentsInd
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 ActivitiesYes (true)ForeignActivitiesInd
More Than5000 K To OrgYes (true)MoreThan5000KToOrgInd
More Than5000 K To IndividualsfalseMoreThan5000KToIndividualsInd
Professional FundraisingfalseProfessionalFundraisingInd
Fundraising ActivitiesYes (true)FundraisingActivitiesInd
Gaming ActivitiesfalseGamingActivitiesInd
Operate HospitalfalseOperateHospitalInd
Grants To OrganizationsYes (true)GrantsToOrganizationsInd
Grants To IndividualsfalseGrantsToIndividualsInd
Schedule J RequiredfalseScheduleJRequiredInd
Tax Exempt BondsfalseTaxExemptBondsInd
Invest Tax Exempt BondsfalseInvestTaxExemptBondsInd
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 With Officer EntfalseBusinessRlnWithOfficerEntInd
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 Document15IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (true)BackupWthldComplianceInd
Employee1EmployeeCnt
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
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members8GoverningBodyVotingMembersCnt
Independent Voting Member8IndependentVotingMemberCnt
Family Or Business RlnYes (true)FamilyOrBusinessRlnInd
Delegation Of Mgmt DutiesfalseDelegationOfMgmtDutiesInd
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

FieldValueIRS element (for citing)
PersonPREMIUM ORGANIZATIONPersonNm
Phone6028402900PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO BOX 4130AddressLine1Txt
CitySCOTTSDALECityNm
State AbbreviationAZStateAbbreviationCd
ZIP85261ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (11 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmt
SHARON LAGAS
CHAIR040.00Yes (X)Yes (X)$0$0$0
ANDREW KRONENBERG
VICE CHAIR005.00Yes (X)Yes (X)$0$0$0
MARTIN DUNLEAVY
TREASURER005.00Yes (X)Yes (X)$0$0$0
RYAN LINDER
SECRETARY003.00Yes (X)$0$0$0
LISA BONEBRAKE
DIRECTOR003.00Yes (X)$0$0$0
MICHAEL PANELLA
DIRECTOR010.00Yes (X)$0$0$0
ANDRE WEINSTOCK
DIRECTOR003.00Yes (X)$0$0$0
PHILLIP KUMNICK
DIRECTOR FROM 04/2018003.00Yes (X)$0$0$0
VINT DEGRAW
DIRECTOR THRU 5/2018005.00Yes (X)$0$0$0
STANLEY SILVER
DIRECTOR THRU 8/2018030.00Yes (X)$0$0$0
GINA PARZIALE
EXECUTIVE DIRECTOR050.00Yes (X)$108,014$0$7,452
FieldValueIRS element (for citing)
Total Reportable Comp From Org$108,014TotalReportableCompFromOrgAmt
Total Other Compensation$7,452TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KfalseTotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
Fundraising$24,181FundraisingAmt
All Other Contributions$779,439AllOtherContributionsAmt
Total Contributions$803,620TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,874TotalRevenueColumnAmt
Exclusion$1,874ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$10,970FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$24,181ContriRptFundraisingEventAmt
Fundraising Direct Expenses$10,970FundraisingDirectExpensesAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescUNREIMBURSED OFFICER EXPENSESDesc
Business900099BusinessCd
Total Revenue Column$1,500TotalRevenueColumnAmt
Related Or Exempt Func Income$1,500RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total$1,500OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$806,994TotalRevenueColumnAmt
Related Or Exempt Func Income$1,500RelatedOrExemptFuncIncomeAmt
Exclusion$1,874ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$25,000TotalAmt
Program Services$25,000ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$4,500TotalAmt
Program Services$4,500ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$250,000TotalAmt
Program Services$250,000ProgramServicesAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$116,966TotalAmt
Program Services$93,573ProgramServicesAmt
Management And General$11,696ManagementAndGeneralAmt
Fundraising$11,697FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$10,708TotalAmt
Program Services$8,566ProgramServicesAmt
Management And General$1,071ManagementAndGeneralAmt
Fundraising$1,071FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$1,101TotalAmt
Program Services$881ProgramServicesAmt
Management And General$110ManagementAndGeneralAmt
Fundraising$110FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$12,170TotalAmt
Program Services$9,736ProgramServicesAmt
Management And General$1,217ManagementAndGeneralAmt
Fundraising$1,217FundraisingAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Prof Fundraising FeesForServicesProfFundraising

FieldValueIRS element (for citing)
Total$2,000TotalAmt
Fundraising$2,000FundraisingAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$82,340TotalAmt
Program Services$50,080ProgramServicesAmt
Management And General$32,260ManagementAndGeneralAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$17,411TotalAmt
Program Services$2,489ProgramServicesAmt
Management And General$8,767ManagementAndGeneralAmt
Fundraising$6,155FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$16,827TotalAmt
Program Services$12,874ProgramServicesAmt
Management And General$1,609ManagementAndGeneralAmt
Fundraising$2,344FundraisingAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$264TotalAmt
Management And General$264ManagementAndGeneralAmt

Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$150,340TotalAmt
Program Services$150,340ProgramServicesAmt

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$0TotalAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$4,146TotalAmt
Program Services$314ProgramServicesAmt
Management And General$3,793ManagementAndGeneralAmt
Fundraising$39FundraisingAmt

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$693,773TotalAmt
Program Services$608,353ProgramServicesAmt
Management And General$60,787ManagementAndGeneralAmt
Fundraising$24,633FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$267,567BOYAmt
EOY$505,118EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$551,379BOYAmt
EOY$593,254EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$110,000BOYAmt
EOY$108,161EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$1,270BOYAmt
EOY$307EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$930,216BOYAmt
EOY$1,206,840EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$10,510BOYAmt
EOY$23,913EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
EOY$150,000EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$10,510BOYAmt
EOY$173,913EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$799,706BOYAmt
EOY$849,766EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$120,000BOYAmt
EOY$183,161EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$919,706BOYAmt
EOY$1,032,927EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$930,216BOYAmt
EOY$1,206,840EOYAmt
FieldValueIRS element (for citing)
Info In Schedule O Part XIYes (X)InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss$113,221ReconcilationRevenueExpnssAmt
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$223,593CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$270,761CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$374,905CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$658,922CurrentTaxYearMinus1YearAmt
Current Tax Year$803,620CurrentTaxYearAmt
Total$2,331,801TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$223,593CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$270,761CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$374,905CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$658,922CurrentTaxYearMinus1YearAmt
Current Tax Year$803,620CurrentTaxYearAmt
Total$2,331,801TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$863,251SubstantialContributorsTotAmt
Public Support Total170$1,468,550PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$295CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$553CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$505CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$950CurrentTaxYearMinus1YearAmt
Current Tax Year$1,874CurrentTaxYearAmt
Total$4,177TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$3,598CurrentTaxYearMinus1YearAmt
Total$3,598TotalAmt
FieldValueIRS element (for citing)
Total Support$2,339,576TotalSupportAmt
Gross Receipts Rltd Activities$29,671GrossReceiptsRltdActivitiesAmt
Public Support CY1700.62770PublicSupportCY170Pct
Public Support PY1700.71610PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind
Public Support CY5090.00000PublicSupportCY509Pct
Investment Income CY0.00000InvestmentIncomeCYPct
Facts And Circumstances TestPart II Section A Line 1 TWO UNUSAL GRANTS HAVE BEEN EXCLUDED FROM THE CALCULATION - 158,759 HAS BEEN EXCLUDED FROM 2014 COLUMN A, LINE 1 AND 200,000 HAS BEEN EXCLUDED FROM 2016 COLUMN C, LINE 1 .FactsAndCircumstancesTestTxt

Form990 Schedule A Part VI Form990ScheduleAPartVIGrp

FieldValueIRS element (for citing)
Form And Line ReferencePart II Section B Line 9FormAndLineReferenceDesc
ExplanationFOLLOWING THE IRS SCHEDULE A INSTRUCTIONS FOR LINE 9, FOR YEARS IN WHICH FUNDRAISING EXPENSES EXCEED FUNDRAISING REVENUE, THEN NO AMOUNT - 0 - HAS BEEN REPORTED ON SCHEDULE A, LINE 9. NET FUNDRAISING EVENT REVENUE REPORTED ON SCHEDULE A, LINE 9 COORDINATES TO THE FORM 990, PART VIII, LINE 8C NET INCOME OR LOSS FROM FUNDRAISING EVENTS.ExplanationTxt

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$120,000BeginningYearBalanceAmt
Contributions$183,161ContributionsAmt
Other Expenditures$120,000OtherExpendituresAmt
End Year Balance$183,161EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$20,000BeginningYearBalanceAmt
Contributions$120,000ContributionsAmt
Other Expenditures$20,000OtherExpendituresAmt
End Year Balance$120,000EndYearBalanceAmt

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

FieldValueIRS element (for citing)
Contributions$20,000ContributionsAmt
End Year Balance$20,000EndYearBalanceAmt
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$808,494TotalRevEtcAuditedFinclStmtAmt
Donated Services And Use Fclts$1,500DonatedServicesAndUseFcltsAmt
Revenue Not Reported$1,500RevenueNotReportedAmt
Revenue Subtotal$806,994RevenueSubtotalAmt
Total Revenue Per Form990$806,994TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$695,273TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$1,500DonatedServicesUseFcltsAmt
Expenses Not Reported$1,500ExpensesNotReportedAmt
Expenses Subtotal$693,773ExpensesSubtotalAmt
Total Expenses Per Form990$693,773TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
V 4THE ORGANIZATIONS TEMPORARILY RESTRICTED NET ASSETS WERE RESTRICTED FOR THE FOLLOWING RESEARCH GRANTS AND TIME RESTRICTIONS ON CONTRIBUTIONS RECEIVABLE.
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.

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)

RegionRegionTxtType Of Activities ConductedTypeOfActivitiesConductedTxtSpecific Services ProvidedSpecificServicesProvidedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
Europe Including Iceland and GreenlandRESEARCH ON ALPORT SYNDROMERESEARCH ON ALPORT SYNDROME$150,000
East Asia and the PacificRESEARCH ON ALPORT SYNDROMERESEARCH ON ALPORT SYNDROME$100,000
FieldValueIRS element (for citing)
Subtotal Spent$250,000SubtotalSpentAmt
Total Spent$250,000TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
Europe Including Iceland and GreenlandResearch Funding$50,000Wire Transfer
Europe Including Iceland and GreenlandResearch Funding$100,000Wire Transfer
East Asia and the PacificResearch Funding$100,000Wire Transfer
FieldValueIRS element (for citing)
Total501c3 Org3Total501c3OrgCnt
Transfer To Foreign CorpfalseTransferToForeignCorpInd
Interest In Foreign TrustfalseInterestInForeignTrustInd
Foreign Corp OwnershipfalseForeignCorpOwnershipInd
Passive Foreign Investmest CofalsePassiveForeignInvestmestCoInd
Foreign PartnershipfalseForeignPartnershipInd
Boycott CountriesfalseBoycottCountriesInd

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 3THE ORGANIZATION REPORTS ALL EXPENDITURES BASED ON THE ACCRUAL ACCOUNTING METHOD.
Part II Line 1THE ORGANIZATION REPORTS ALL EXPENDITURES BASED ON THE ACCRUAL ACCOUNTING METHOD.

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1ARIZONA 5K RACEEvent1Nm
Gross Receipts Event1$35,151GrossReceiptsEvent1Amt
Charitable Contri Event1$24,181CharitableContriEvent1Amt
Gross Revenue Event1$10,970GrossRevenueEvent1Amt
Non Cash Prizes Event1$481NonCashPrizesEvent1Amt
Rent Facility Costs Event1$635RentFacilityCostsEvent1Amt
Food And Beverage Event1$396FoodAndBeverageEvent1Amt
Other Direct Expenses Event1$9,458OtherDirectExpensesEvent1Amt
Gross Receipts Total$35,151GrossReceiptsTotalAmt
Charitable Contributions Tot$24,181CharitableContributionsTotAmt
Gross Revenue Total Events$10,970GrossRevenueTotalEventsAmt
Non Cash Prizes Total Events$481NonCashPrizesTotalEventsAmt
Rent Fclty Costs Total Events$635RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events$396FoodAndBeverageTotalEventsAmt
Oth Direct Expnss Total Events$9,458OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$10,970DirectExpenseSummaryEventsAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable

Recipient Business Name RecipientBusinessName

FieldValueIRS element (for citing)
Business Name Line1UNIVERSITY OF MIAMIBusinessNameLine1Txt

US Address USAddress

FieldValueIRS element (for citing)
Address Line11580 NW 10TH AVEAddressLine1Txt
CityMIAMICityNm
State AbbreviationFLStateAbbreviationCd
ZIP33136ZIPCd
FieldValueIRS element (for citing)
Recipient EIN590624458RecipientEIN
IRC Section501 C3IRCSectionDesc
Cash Grant$25,000CashGrantAmt
Purpose Of GrantRESEARCH FUNDINGPurposeOfGrantTxt
FieldValueIRS element (for citing)
Total501c3 Org1Total501c3OrgCnt

Supplemental Information Detail SupplementalInformationDetail (4 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 2EACH YEAR ASF SPONSORS THE PAUL SILVER TRIBUTE AWARD FOR STUDENTS AND YOUNG ADULTS WITH ALPORT SYNDROME. APPLICANTS ARE EVALUATED BASED ON AN ESSAY AND OUTSIDE RECOMMENDATIONS AND ON THE POTENTIAL IMPACT OF THE AWARD. THE AWARD CAN BE USED FOR EDUCATION, TO COMPLETE A PROJECT, OR PURSUE AN ACTIVITY THAT WILL ENHANCE THE APPLICANTS LIFE.

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (9 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part III, Line 4dProgram Service Expenses 42,324, Grants and allocations 0, Revenue 0 MEDICAL AND SCIENTIFIC CONFERENCES. ASF RAISES AWARENESS OF CURRENT CLINICAL GUIDELINES, HELPS PROMOTE EMERGING RESEARCH AND CURRENT CLINICAL TRIALS AT MEDICAL CONFERENCES, AS WELL AS SPONSORS MEDICAL AND SCIENTIFIC SYMPOSIUMS AT EVENTS SUCH AS THE AMERICAN SOCIETY OF NEPHROLOGY KIDNEY WEEK, ONE OF THE LARGEST RENAL MEETINGS IN THE WORLD, AND THE INTERNATIONAL PEDIATRIC NEPHROLOGY ASSOCIATION CONGRESS.
Form 990, Part III, Line 4dProgram Service Expenses 0, Grants and allocations 0, Revenue 0 INTERNATIONAL ALPORT SYNDROME COLLABORATION. ASF IS WORKING WITH GLOBAL STAKEHOLDERS PATIENTS, CLINICIANS, RESEARCHERS, AND PHARMA INDUSTRY TO DEVELOP A STRATEGIC RESEARCH AGENDA TO FACILITATE THE DEVELOPMENT OF NOVEL TREATMENTS AND ADDRESS UNMET NEEDS IN RESEARCH AND PATIENT CARE. ASF HAS SPONSORED OR CO-SPONSORED 2 INTERNATIONAL RESEARCH WORKSHOPS AND 2 SCIENTIFIC MEETINGS.
Form 990, Part III, Line 4dProgram Service Expenses 135,210, Grants and allocations 0, Revenue 1,500 ADVOCACY. ASF AND ITS MEMBERS PARTICIPATE IN COLLABORATIVE ADVOCACY EVENTS TO RAISE AWARENESS OF ISSUES RELATED TO ALL KIDNEY AND RARE DISEASES, AS WELL AS ALPORT SYNDROME. ASF HAS SUPPORTED EVENTS COORDINATED BY THE NATIONAL KIDNEY FOUNDATION, AMERICAN SOCIETY OF NEPHROLOGY, NATIONAL ORGANIZATION OF RARE DISORDERS, AND THE RARE DISEASE LEGISLATIVE ADVOCATES. ONLINE INFORMATION AND RESOURCES. ASFS WEBSITE ENSURES THAT CLEAR AND ACCURATE INFORMATION ABOUT ALPORT SYNDROME IS READILY AVAILABLE. RESOURCES INCLUDE EDUCATIONAL MATERIALS, WEBINARS, CLINICAL GUIDELINES, AND VIDEOS FROM PATIENT AND MEDICAL CONFERENCES. SOCIAL MEDIA, BLOG AND MONTHLY E-NEWSLETTER. ASF ACTIVELY USES FACEBOOK, TWITTER, INSTAGRAM, AND YOUTUBE, MAINTAINS A PRIVATE FACEBOOK SUPPORT GROUP AND DISSEMINATES A MONTHLY E-NEWSLETTER TO PROVIDE THE LATEST ALPORT SYNDROME DEVELOPMENTS AND ONGOING COMMUNICATION AND SUPPORT. ASF ALSO HAS A BLOG TO HIGHLIGHT ISSUES OF IMPORTANCE TO THE ALPORT SYNDROME COMMUNITY.
Form 990, Part VI, Section A, Line 2CHAIR SHARON LAGAS, AND DIRECTOR STANLEY SILVER, ARE RELATED AS DEFINED BY THE IRS DEFINITION OF RELATIVE.
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. AT THE FIRST MEETING OF THE BOARD FOLLOWING THE FILING OF THE 990 WITH THE IRS, THE COMPLETE FORM 990 IS PRESENTED TO THE BOARD BY THE ORGANIZATIONS LEAD OFFICERS WITH RESPONSIBILITY OVER THE FORM 990S REVIEW THEREAFTER, QUESTIONS ARE TAKEN AND THE FORM, ITS PREPARATION, AND ITS PUBLIC RELATION IMPACT IS DISCUSSED.
Form 990, Part VI, Section B, Line 12AT 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, COPIES OF ALL GOVERNING DOCUMENTS INCLUDING ITS CONFLICT OF INTEREST POLICIES AND FINANCIAL STATEMENTS WHEN REQUESTED IN WRITING OR IN PERSON.
Form 990, Part XI, Line 8OTHER CONTRACT SERVICES 82,340, PATIENT SUPPORT EDUCATION CONSULANTS 50,080, PROGRAM 50,080, ADMIN -0-, FUNDRAISING -0- ADMINISTRATIVE SUPPORT 30,940, PROGRAM -0-, ADMIN 30,940, FUNDRAISING -0- PAYROLL PROCESSING FEES 1,320, PROGRAM -0-, ADMIN 1,320, FUNDRAISING -0-.