ALPORT SYNDROME FOUNDATION INC: Form 990, tax year 2016
View the entire original 990 at ProPublica ↗
- Organization
- ALPORT SYNDROME FOUNDATION INC (EIN 20-8237159)
- Tax period
- 2016-01-01 to 2016-12-31
- Filed
- 2017-08-18
- IRS object ID
- 201742309349300934
- Schema version
- 2016v3.0
- 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 | 2017-08-18T01:16:07-00:00 | ReturnTs |
| Tax Period End | 2016-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | SECHLER CPA PC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 921 E ORANGE DRIVE | AddressLine1Txt |
| City | PHOENIX | CityNm |
| State Abbreviation | AZ | StateAbbreviationCd |
| ZIP | 85014 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2016-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 208237159 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | ALPORT SYNDROME FOUNDATION INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | ALPO | BusinessNameControlTxt |
| Phone | 4808003510 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 4130 | AddressLine1Txt |
| City | SCOTTSDALE | CityNm |
| State Abbreviation | AZ | StateAbbreviationCd |
| ZIP | 852614130 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | STANLEY SILVER | PersonNm |
| Person Title | TREASURER | PersonTitleTxt |
| Signature | 2017-08-18 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | CAROLYN SECHLER | PreparerPersonNm |
| Phone | 6022302700 | PhoneNum |
| Preparation | 2017-08-18 | PreparationDt |
Filing Security Information FilingSecurityInformation
IP Address IPAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| I Pv4 Address | 24.56.6.144 | IPv4AddressTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IP | 2017-08-18 | IPDt |
| IP Tm | 20:12:42 | IPTm |
| IP Timezone | MS | IPTimezoneCd |
| Filing License Type | P | FilingLicenseTypeCd |
| At Submission Creation Device Id | 3973010445A18CF9B0E9BBCBDAE878E56BCFD508 | AtSubmissionCreationDeviceId |
| At Submission Filing Device Id | E259EE71697CF24F78ABE1C588D8C1629087F991 | AtSubmissionFilingDeviceId |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2016 | TaxYr |
| Build TS | 2021-01-29 14:40:06Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Change | Yes (X) | AddressChangeInd |
| Principal Officer | STAN SILVER | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1608 E BRIARWOOD TERRACE | AddressLine1Txt |
| City | PHOENIX | CityNm |
| State Abbreviation | AZ | StateAbbreviationCd |
| ZIP | 85048 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $581,437 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.ALPORTSYNDROME.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2007 | FormationYr |
| Legal Domicile State | AZ | LegalDomicileStateCd |
| Activity Or Mission | TO 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 Body | 6 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 6 | VotingMembersIndependentCnt |
| Total Employee | 1 | TotalEmployeeCnt |
| Total Volunteers | 60 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| PY Contributions Grants | $270,761 | PYContributionsGrantsAmt |
| CY Contributions Grants | $574,905 | CYContributionsGrantsAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $553 | PYInvestmentIncomeAmt |
| CY Investment Income | $505 | CYInvestmentIncomeAmt |
| PY Other Revenue | $719 | PYOtherRevenueAmt |
| CY Other Revenue | -$4,633 | CYOtherRevenueAmt |
| PY Total Revenue | $272,033 | PYTotalRevenueAmt |
| CY Total Revenue | $570,777 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $65,000 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $176,200 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| CY Salaries Comp Emp Bnft Paid | $100,902 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $20,287 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $119,677 | PYOtherExpensesAmt |
| CY Other Expenses | $238,154 | CYOtherExpensesAmt |
| PY Total Expenses | $184,677 | PYTotalExpensesAmt |
| CY Total Expenses | $515,256 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $87,356 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $55,521 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $583,786 | TotalAssetsBOYAmt |
| Total Assets EOY | $772,448 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $6,248 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $89,389 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $577,538 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $683,059 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | THE 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 Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $151,200 | ExpenseAmt |
| Grant | $151,200 | GrantAmt |
| Desc | COMPETITIVE 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 Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $25,000 | ExpenseAmt |
| Grant | $25,000 | GrantAmt |
| Desc | ALPORT TREATMENTS AND OUTCOMES REGISTRY ASTOR. ASF PROVIDES FUNDING AND SUPPORT FOR PATIENT REGISTRY ASTOR BASED AT THE UNIVERSITY OF MINNESOTA. IN ADDITION, ASF HELPS RECRUIT PATIENTS AND FAMILY MEMBERS TO JOIN THE REGISTRY THROUGH EDUCATION ON THE SIGNIFICANCE OF A REGISTRY FOR CLINICAL STUDIES FOR A RARE DISEASE SUCH AS ALPORT SYNDROME | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $82,961 | ExpenseAmt |
| Desc | PATIENT 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. 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 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $193,405 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $452,566 | 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 |
| Temp Or Permanent Endowments | Yes (true) | TempOrPermanentEndowmentsInd |
| 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 | Yes (true) | 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 With Officer Ent | false | BusinessRlnWithOfficerEntInd |
| 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 | 8 | 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 |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 6 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 6 | 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 | Yes (true) | 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 | AZ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | STANLEY SILVER | PersonNm |
| Phone | 4804733209 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 30042 N 77TH PLACE | AddressLine1Txt |
| City | SCOTTSDALE | CityNm |
| State Abbreviation | AZ | StateAbbreviationCd |
| ZIP | 85266 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (7 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|
| SHARON LAGAS | ||||||
| PRESIDENT | 040.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| VINT DEGRAW | ||||||
| VICE PRESIDENT | 003.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| STANLEY SILVER | ||||||
| TREASURER | 030.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| MICHAEL PANELLA | ||||||
| DIRECTOR | 010.00 | Yes (X) | $0 | $0 | $0 | |
| JANE SCHNEIROV | ||||||
| DIRECTOR | 005.00 | Yes (X) | $0 | $0 | $0 | |
| MARTIN DUNLEAVY | ||||||
| DIRECTOR | 003.00 | Yes (X) | $0 | $0 | $0 | |
| GINA PARZIALE | ||||||
| EXECUTIVE DIRECTOR | 050.00 | Yes (X) | $84,442 | $0 | $0 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $84,442 | TotalReportableCompFromOrgAmt |
| Former Ofcr Employees Listed | false | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | false | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
| Fundraising | $110,459 | FundraisingAmt |
| All Other Contributions | $464,446 | AllOtherContributionsAmt |
| Total Contributions | $574,905 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $505 | TotalRevenueColumnAmt |
| Exclusion | $505 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contri Rpt Fundraising Event | $110,459 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $10,660 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$10,660 | TotalRevenueColumnAmt |
| Exclusion | -$10,660 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| UNREIMBURSED OFFICER EXPENSES | 900099 | $4,318 | $4,318 |
| OTHER REIMBURSEMENTS REBATES | 900099 | $1,709 | $1,709 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $6,027 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $570,777 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $6,027 | RelatedOrExemptFuncIncomeAmt |
| Exclusion | -$10,155 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $26,200 | TotalAmt |
| Program Services | $26,200 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $150,000 | TotalAmt |
| Program Services | $150,000 | ProgramServicesAmt |
Benefits To Members BenefitsToMembersGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $94,442 | TotalAmt |
| Program Services | $75,554 | ProgramServicesAmt |
| Management And General | $9,444 | ManagementAndGeneralAmt |
| Fundraising | $9,444 | FundraisingAmt |
Comp Disqual Persons CompDisqualPersonsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,460 | TotalAmt |
| Program Services | $5,168 | ProgramServicesAmt |
| Management And General | $646 | ManagementAndGeneralAmt |
| Fundraising | $646 | FundraisingAmt |
Fees For Services Management FeesForServicesManagementGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,712 | TotalAmt |
| Program Services | $2,970 | ProgramServicesAmt |
| Management And General | $371 | ManagementAndGeneralAmt |
| Fundraising | $371 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $14,888 | TotalAmt |
| Program Services | $8,870 | ProgramServicesAmt |
| Management And General | $4,909 | ManagementAndGeneralAmt |
| Fundraising | $1,109 | FundraisingAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fees For Services Prof Fundraising | FeesForServicesProfFundraising |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,263 | TotalAmt |
| Program Services | $4,127 | ProgramServicesAmt |
| Management And General | $1,136 | ManagementAndGeneralAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $95 | TotalAmt |
| Fundraising | $95 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $74,817 | TotalAmt |
| Program Services | $45,167 | ProgramServicesAmt |
| Management And General | $22,715 | ManagementAndGeneralAmt |
| Fundraising | $6,935 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,309 | TotalAmt |
| Program Services | $9,187 | ProgramServicesAmt |
| Management And General | $1,061 | ManagementAndGeneralAmt |
| Fundraising | $1,061 | FundraisingAmt |
Royalties RoyaltiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,417 | TotalAmt |
| Program Services | $2,417 | ProgramServicesAmt |
Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $120,930 | TotalAmt |
| Program Services | $120,324 | ProgramServicesAmt |
| Management And General | $303 | ManagementAndGeneralAmt |
| Fundraising | $303 | FundraisingAmt |
Interest InterestGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Payments To Affiliates PaymentsToAffiliatesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,228 | TotalAmt |
| Program Services | $2,582 | ProgramServicesAmt |
| Management And General | $323 | ManagementAndGeneralAmt |
| Fundraising | $323 | FundraisingAmt |
Other Expenses OtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | REGISTRATION FEES | Desc |
| Total | $1,495 | TotalAmt |
| Management And General | $1,495 | ManagementAndGeneralAmt |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $515,256 | TotalAmt |
| Program Services | $452,566 | ProgramServicesAmt |
| Management And General | $42,403 | ManagementAndGeneralAmt |
| Fundraising | $20,287 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $305,454 | BOYAmt |
| EOY | $250,661 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $276,974 | BOYAmt |
| EOY | $500,429 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $20,000 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,358 | BOYAmt |
| EOY | $1,358 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $583,786 | BOYAmt |
| EOY | $772,448 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,248 | BOYAmt |
| EOY | $14,389 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $75,000 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,248 | BOYAmt |
| EOY | $89,389 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $577,538 | BOYAmt |
| EOY | $663,059 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $20,000 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $577,538 | BOYAmt |
| EOY | $683,059 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $583,786 | BOYAmt |
| EOY | $772,448 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | $55,521 | ReconcilationRevenueExpnssAmt |
| Prior Period Adjustments | $50,000 | PriorPeriodAdjustmentsAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | false | AccountantCompileOrReviewInd |
| FS Audited | Yes (true) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (true) | AuditCommitteeInd |
| Federal Grant Audit Required | false | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $216,610 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $206,350 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $223,593 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $270,761 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $374,905 | CurrentTaxYearAmt |
| Total | $1,292,219 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $216,610 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $206,350 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $223,593 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $270,761 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $374,905 | CurrentTaxYearAmt |
| Total | $1,292,219 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $102,589 | SubstantialContributorsTotAmt |
| Public Support Total170 | $1,189,630 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $327 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $286 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $295 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $553 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $505 | CurrentTaxYearAmt |
| Total | $1,966 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $3,532 | CurrentTaxYearMinus4YearsAmt |
| Total | $3,532 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $1,297,717 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $83,013 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.91670 | PublicSupportCY170Pct |
| Public Support PY170 | 0.96580 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
| Public Support CY509 | 0.00000 | PublicSupportCY509Pct |
| Investment Income CY | 0.00000 | InvestmentIncomeCYPct |
| Facts And Circumstances Test | Part II Section B Line 9 and Line 12 After careful consideration, fundraising events for Column a 2012, Column b 2013, Column c 2014, and Column d 2015 have been reported Net of fundraising event expenses on Line 9, of Schedule A, versus the gross fundraising event revenue reported within Line 12 of Schedule A. Following 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. | FactsAndCircumstancesTestTxt |
Form990 Schedule A Part VI Form990ScheduleAPartVIGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part II Section B Line 9 | FormAndLineReferenceDesc |
| Explanation | 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. The change in reporting is a more conservative approach, reporting the fundraising event revenue as excluded under the not regularly carried on exemption of IRC 512, versus the exclusion of revenue under IRC 513. | ExplanationTxt |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule D IRS990ScheduleD
| Field | Value | IRS element (for citing) |
|---|---|---|
| Incl Escrow Custodial Acct Liab | false | InclEscrowCustodialAcctLiabInd |
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributions | $20,000 | ContributionsAmt |
| End Year Balance | $20,000 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Term Endowment Balance EOY | 1.00000 | TermEndowmentBalanceEOYPct |
Other Securities OtherSecuritiesGrp (2 entries)
| DescDesc |
|---|
| Financial derivatives and other financial products |
| Closely-held equity interests |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | Federal income taxes | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Rev Etc Audited Fincl Stmt | $575,102 | TotalRevEtcAuditedFinclStmtAmt |
| Donated Services And Use Fclts | $4,325 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $4,325 | RevenueNotReportedAmt |
| Revenue Subtotal | $570,777 | RevenueSubtotalAmt |
| Total Revenue Per Form990 | $570,777 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $519,581 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $4,325 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $4,325 | ExpensesNotReportedAmt |
| Expenses Subtotal | $515,256 | ExpensesSubtotalAmt |
| Total Expenses Per Form990 | $515,256 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | V 4 | FormAndLineReferenceDesc |
| Explanation | THE ORGANIZATIONS TEMPORARILY RESTRICTED NET ASSETS WERE RESTRICTED BASED ON TIME RESTRICTIONS FOR CONTRIBUTIONS RECEIVABLE AND WILL BE USED FOR FUTURE SPECIAL EVENTS AND/OR RESEARCH GRANTS. | ExplanationTxt |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)
| RegionRegionTxt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|
| North America | RESEARCH ON ALPORT SYNDROME | RESEARCH ON ALPORT SYNDROME | $50,000 |
| East Asia and the Pacific | RESEARCH ON ALPORT SYNDROME | RESEARCH ON ALPORT SYNDROME | $100,000 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Spent | $150,000 | SubtotalSpentAmt |
| Total Spent | $150,000 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|---|
| North America | RESEARCH ON ALPORT SYNDROME | $50,000 | CHECK |
| East Asia and the Pacific | RESEARCH ON ALPORT SYNDROME | $100,000 | WIRE TRANSF |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 2 | 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 |
Supplemental Information Detail SupplementalInformationDetail (5 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Part I Line 1 | FOR 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 2 | REPORTING 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 2 | ACCOUNTING 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 3 | THE ORGANIZATION REPORTS ALL EXPENDITURES BASED ON THE ACCRUAL ACCOUNTING METHOD. |
| Part II Line 1 | THE ORGANIZATION REPORTS ALL EXPENDITURES BASED ON THE ACCRUAL ACCOUNTING METHOD. |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | ARIZONA 5K RACE | Event1Nm |
| Gross Receipts Event1 | $54,333 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $54,333 | CharitableContriEvent1Amt |
| Non Cash Prizes Event1 | $3,657 | NonCashPrizesEvent1Amt |
| Rent Facility Costs Event1 | $635 | RentFacilityCostsEvent1Amt |
| Entertainment Event1 | $200 | EntertainmentEvent1Amt |
| Other Direct Expenses Event1 | $4,070 | OtherDirectExpensesEvent1Amt |
| Event2 | ALL OTHER RACES | Event2Nm |
| Gross Receipts Event2 | $56,126 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $56,126 | CharitableContriEvent2Amt |
| Other Direct Expenses Event2 | $2,098 | OtherDirectExpensesEvent2Amt |
| Gross Receipts Total | $110,459 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $110,459 | CharitableContributionsTotAmt |
| Non Cash Prizes Total Events | $3,657 | NonCashPrizesTotalEventsAmt |
| Rent Fclty Costs Total Events | $635 | RentFcltyCostsTotalEventsAmt |
| Entertainment Total Events | $200 | EntertainmentTotalEventsAmt |
| Oth Direct Expnss Total Events | $6,168 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $10,660 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$10,660 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable
Recipient Business Name RecipientBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | ALPORT SYNDROME TREATMENT AND OUTCOMES REGISTRY | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 200 OAK STREET SE SUITE 500 | AddressLine1Txt |
| City | MINNEAPOLIS | CityNm |
| State Abbreviation | MN | StateAbbreviationCd |
| ZIP | 554552010 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Recipient EIN | 416042488 | RecipientEIN |
| IRC Section | 501 C 3 | IRCSectionDesc |
| Cash Grant | $50,000 | CashGrantAmt |
| Purpose Of Grant | PATIENT REGISTRY | PurposeOfGrantTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 1 | Total501c3OrgCnt |
Supplemental Information Detail SupplementalInformationDetail (4 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Part I Line 1 | FOR 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 2 | REPORTING 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 2 | ACCOUNTING 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 2 | EACH 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 ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Form 990, Part III, Line 4d | Program Service Expenses 30,703, 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 4d | Program Service Expenses 10,093, 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 4d | Program Service Expenses 152,609, Grants and allocations 0, Revenue 0 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 2 | PRESIDENT SHARON LAGAS, AND TREASURER STANLEY SILVER, ARE RELATED AS DEFINED BY THE IRS DEFINITION OF RELATIVE. |
| Form 990, Part VI, Section B, Line 11 B | THE 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 12 | AT 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 B | THE 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 19 | THE 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 8 | PRIOR PERIOD ADJUSTMENT OF 50,000, PLEDGE RECEIVABLES AND REVENUE COLLECTED IN CURRENT YEAR RELATED TO PRIOR PERIODS. |