EVERYLIFE FOUNDATION FOR RARE DISEASES: Form 990, tax year 2015
View the entire original 990 at ProPublica ↗
- Organization
- EVERYLIFE FOUNDATION FOR RARE DISEASES (EIN 26-4614274)
- Tax period
- 2015-01-01 to 2015-12-31
- Filed
- 2016-06-08
- IRS object ID
- 201631609349301008
- Schema version
- 2015v2.0
- 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
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule F
- Schedule I
- Schedule J
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2016-06-08T15:02:57-07:00 | ReturnTs |
| Tax Period End | 2015-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Regalia & Associates CPAs | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 103 Town Country Dr Ste K | AddressLine1Txt |
| City | Danville | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94526 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2015-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 264614274 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Everylife Foundation for Rare Diseases | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | EVER | BusinessNameControlTxt |
| Phone | 4158840223 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 77 Digital Drive | AddressLine1Txt |
| City | Novato | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94949 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Emil D Kakkis MD | PersonNm |
| Person Title | President | PersonTitleTxt |
| Signature | 2016-06-08 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | Douglas W Regalia | PreparerPersonNm |
| PTIN | P00186389 | PTIN |
| Phone | 9253140390 | PhoneNum |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2015 | TaxYr |
| Build TS | 2016-12-15 16:53:06Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | Emil D Kakkis MD PhD | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 77 Digital Drive 210 | AddressLine1Txt |
| City | Novato | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94949 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $1,787,563 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| All Affiliates Included | false | AllAffiliatesIncludedInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | www.everylifefoundation.org | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2009 | FormationYr |
| Legal Domicile State | CA | LegalDomicileStateCd |
| Activity Or Mission | EveryLife Foundation for Rare Dis- eases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We do more with the existing science and bring life-saving treatments to millions of people suffering from rare diseases. | ActivityOrMissionDesc |
| Voting Members Governing Body | 8 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 7 | VotingMembersIndependentCnt |
| Total Employee | 7 | TotalEmployeeCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| PY Contributions Grants | $1,299,018 | PYContributionsGrantsAmt |
| CY Contributions Grants | $1,655,552 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $52,609 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $132,011 | CYProgramServiceRevenueAmt |
| CY Investment Income | $0 | CYInvestmentIncomeAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $1,351,627 | PYTotalRevenueAmt |
| CY Total Revenue | $1,787,563 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $111,859 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $146,312 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $519,453 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $717,682 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $151,407 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $583,050 | PYOtherExpensesAmt |
| CY Other Expenses | $835,645 | CYOtherExpensesAmt |
| PY Total Expenses | $1,214,362 | PYTotalExpensesAmt |
| CY Total Expenses | $1,699,639 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $137,265 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $87,924 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $436,978 | TotalAssetsBOYAmt |
| Total Assets EOY | $516,371 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $59,429 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $50,898 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $377,549 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $465,473 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | Information regarding The Foundation's programs can be obtained at www.everylifefoundation.org | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $675,413 | ExpenseAmt |
| Desc | Everylife FoundationThe EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans. The science exists for many of these diseases to be treated; however, treatments may never be developed because of roadblocks in the development process, such as a lack of investment and a challenging regulatory environment. The Foundation works with Patient Organizations, Industry, Academic Scientists, the Food and Drug (continued on Scedule O) | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $522,019 | ExpenseAmt |
| Desc | Rare Disease Legislative AdvocatesRare Disease Legislative Advocates (RDLA) is a collaborative program designed to support the advocacy of all rare disease groups. RDLA works to empower the individual to become an advocate by providing informational meetings, legislative resources, advocacy tools, and special events that support organizations and advocates working to promote rare disease legislation. RDLAs goal is to bring the rare disease community together, grow the patient advocacy community and work collectively to ensure that the many voices of patients with rare diseases have an opportunity to be heard in State Government and on Capitol Hill. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $179,171 | ExpenseAmt |
| Desc | Italian Street Painting MarinItalian Street Painting Marin (ISPM), the Foundations community outreach program, showcases the fine art of street painting and supports quality arts-based programs in our community, Marin County, California. ISPM holds an annual event spotlighting Madonnari (street painters) from around the world in downtown San Rafael and provides creative opportunities for community members to feature this popular performance art. The Foundation believes the arts enhance, inspire, and change lives. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $1,376,603 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (true) | 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 | false | TempOrPermanentEndowmentsInd |
| Report Land Building Equipment | Yes (true) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | false | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | false | ReportProgramRelatedInvstInd |
| Report Other Assets | false | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (true) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (true) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (true) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | false | ConsolidatedAuditFinclStmtInd |
| School Operating | false | SchoolOperatingInd |
| Foreign Office | Yes (true) | ForeignOfficeInd |
| Foreign Activities | Yes (true) | ForeignActivitiesInd |
| More Than5000 K To Org | false | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | false | MoreThan5000KToIndividualsInd |
| Professional Fundraising | false | ProfessionalFundraisingInd |
| Fundraising Activities | false | FundraisingActivitiesInd |
| Gaming Activities | false | GamingActivitiesInd |
| Operate Hospital | false | OperateHospitalInd |
| Grants To Organizations | Yes (true) | GrantsToOrganizationsInd |
| Grants To Individuals | Yes (true) | GrantsToIndividualsInd |
| Schedule J Required | Yes (true) | ScheduleJRequiredInd |
| Tax Exempt Bonds | false | TaxExemptBondsInd |
| Invest Tax Exempt Bonds | false | InvestTaxExemptBondsInd |
| Escrow Account | false | EscrowAccountInd |
| On Behalf Of Issuer | false | OnBehalfOfIssuerInd |
| 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 |
| Transaction With Control Ent | false | TransactionWithControlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | false | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | false | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (true) | ScheduleORequiredInd |
| IRP Document | 10 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (true) | BackupWthldComplianceInd |
| Employee | 7 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (true) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | false | UnrelatedBusIncmOverLimitInd |
| Form990 T Filed | false | Form990TFiledInd |
| 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 |
| Form8282 Filed | 0 | Form8282FiledCnt |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | false | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | false | PayPremiumsPrsnlBnftCntrctInd |
| Form8899 Filedind | false | Form8899Filedind |
| Form1098 C Filed | false | Form1098CFiledInd |
| DAF Excess Business Holdings | false | DAFExcessBusinessHoldingsInd |
| Taxable Distributions | false | TaxableDistributionsInd |
| Distribution To Donor | false | DistributionToDonorInd |
| Org Filed In Lieu Of Form1041 | false | OrgFiledInLieuOfForm1041Ind |
| Licensed More Than One State | false | LicensedMoreThanOneStateInd |
| Indoor Tanning Services | false | IndoorTanningServicesInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 8 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 7 | 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 | Yes (true) | CompensationProcessOtherInd |
| Investment In Joint Venture | false | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Deborah Walter Finance Mgr | PersonNm |
| Phone | 4158840223 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 77 Digital Drive 210 | AddressLine1Txt |
| City | Novato | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94949 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (9 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|---|
| Emil D Kakkis MD PhD | ||||||||
| President | 4.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| Julia Jenkins | ||||||||
| Secretary & E.D | 40.00 | 0.00 | Yes (X) | Yes (X) | $147,000 | $0 | $5,426 | |
| John Klock MD | ||||||||
| Treasurer | 4.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| Ritu Baral | ||||||||
| Director | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| Mark Dant | ||||||||
| Director | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| David Rowitch MD PhD | ||||||||
| Director | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| Jenny Soriano MD | ||||||||
| Director | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| Matt Wilsey | ||||||||
| Director | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| Max Bronstein | ||||||||
| Dir of Advocacy | 40.00 | 0.00 | $100,000 | $0 | $5,249 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $247,000 | TotalReportableCompFromOrgAmt |
| Total Other Compensation | $10,675 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 1 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | false | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (true) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp
Contractor Name ContractorName
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Polsinelli PC | BusinessNameLine1Txt |
Contractor Address ContractorAddress
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 3 Embarcadero Center 1350 | AddressLine1Txt |
| City | San Francisco | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94111 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Services | Legal Advocacy | ServicesDesc |
| Compensation | $120,052 | CompensationAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 1 | CntrctRcvdGreaterThan100KCnt |
| All Other Contributions | $1,655,552 | AllOtherContributionsAmt |
| Total Contributions | $1,655,552 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|
| Earned income from ISP | $79,986 | $79,986 |
| Ticket Sales | $52,025 | $52,025 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $132,011 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Royalties Revenue RoyaltiesRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Rental Income Or Loss NetRentalIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Income From Gaming NetIncomeFromGamingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Income Or Loss NetIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $0 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,787,563 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $132,011 | RelatedOrExemptFuncIncomeAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $82,513 | TotalAmt |
| Program Services | $82,513 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $52,900 | TotalAmt |
| Program Services | $52,900 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $10,899 | TotalAmt |
| Program Services | $10,899 | 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 | $147,000 | TotalAmt |
| Program Services | $96,120 | ProgramServicesAmt |
| Management And General | $25,777 | ManagementAndGeneralAmt |
| Fundraising | $25,103 | 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 | $464,517 | TotalAmt |
| Program Services | $296,193 | ProgramServicesAmt |
| Management And General | $90,195 | ManagementAndGeneralAmt |
| Fundraising | $78,129 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $61,300 | TotalAmt |
| Program Services | $39,326 | ProgramServicesAmt |
| Management And General | $11,625 | ManagementAndGeneralAmt |
| Fundraising | $10,349 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $44,865 | TotalAmt |
| Program Services | $28,783 | ProgramServicesAmt |
| Management And General | $8,509 | ManagementAndGeneralAmt |
| Fundraising | $7,573 | 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 | $1,750 | TotalAmt |
| Program Services | $1,750 | ProgramServicesAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $14,646 | TotalAmt |
| Program Services | $4,829 | ProgramServicesAmt |
| Management And General | $9,817 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Prof Fundraising FeesForServicesProfFundraising
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
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 | $63,172 | TotalAmt |
| Program Services | $53,612 | ProgramServicesAmt |
| Fundraising | $9,560 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $35,258 | TotalAmt |
| Program Services | $35,258 | ProgramServicesAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $42,055 | TotalAmt |
| Program Services | $36,231 | ProgramServicesAmt |
| Management And General | $4,638 | ManagementAndGeneralAmt |
| Fundraising | $1,186 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $36,930 | TotalAmt |
| Program Services | $31,825 | ProgramServicesAmt |
| Management And General | $647 | ManagementAndGeneralAmt |
| Fundraising | $4,458 | FundraisingAmt |
Royalties RoyaltiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $69,526 | TotalAmt |
| Program Services | $49,893 | ProgramServicesAmt |
| Management And General | $7,818 | ManagementAndGeneralAmt |
| Fundraising | $11,815 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $76,060 | TotalAmt |
| Program Services | $76,060 | 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 | $0 | TotalAmt |
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 | $6,271 | TotalAmt |
| Management And General | $6,271 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,354 | TotalAmt |
| Program Services | $3,865 | ProgramServicesAmt |
| Management And General | $754 | ManagementAndGeneralAmt |
| Fundraising | $735 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| Program Events | $204,191 | $204,191 | ||
| Advocacy | $141,238 | $141,238 | ||
| Outside consultants | $96,944 | $96,944 | ||
| Postage and Shipping | $20,018 | $19,469 | $278 | $271 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,232 | TotalAmt |
| Program Services | $14,704 | ProgramServicesAmt |
| Management And General | $5,300 | ManagementAndGeneralAmt |
| Fundraising | $2,228 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,699,639 | TotalAmt |
| Program Services | $1,376,603 | ProgramServicesAmt |
| Management And General | $171,629 | ManagementAndGeneralAmt |
| Fundraising | $151,407 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $336,097 | BOYAmt |
| EOY | $444,739 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $14 | BOYAmt |
| EOY | $14 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $65,000 | BOYAmt |
| EOY | $30,206 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Receivables From Officers Etc ReceivablesFromOfficersEtcGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Rcvbl From Disqualified Prsn RcvblFromDisqualifiedPrsnGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $10,647 | BOYAmt |
| EOY | $17,831 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $98,557 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $84,393 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $18,992 | BOYAmt |
| EOY | $14,164 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Investments Other Securities InvestmentsOtherSecuritiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,228 | BOYAmt |
| EOY | $9,417 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $436,978 | BOYAmt |
| EOY | $516,371 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $19,576 | BOYAmt |
| EOY | $27,420 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $39,853 | BOYAmt |
| EOY | $23,478 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $59,429 | BOYAmt |
| EOY | $50,898 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $332,549 | BOYAmt |
| EOY | $395,473 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $45,000 | BOYAmt |
| EOY | $70,000 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $377,549 | BOYAmt |
| EOY | $465,473 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $436,978 | BOYAmt |
| EOY | $516,371 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $87,924 | ReconcilationRevenueExpnssAmt |
| 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 | $739,576 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $791,676 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $872,694 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,299,018 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,655,552 | CurrentTaxYearAmt |
| Total | $5,358,516 | TotalAmt |
Tax Rev Levied Orgnztnl Bnft170 TaxRevLeviedOrgnztnlBnft170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Govt Furn Srvc Fclts Vl170 GovtFurnSrvcFcltsVl170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $739,576 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $791,676 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $872,694 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,299,018 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,655,552 | CurrentTaxYearAmt |
| Total | $5,358,516 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $3,251,241 | SubstantialContributorsTotAmt |
| Public Support Total170 | $2,107,275 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $5,358,516 | TotalSupportAmt |
| Public Support CY170 | 0.39330 | PublicSupportCY170Pct |
| Public Support PY170 | 0.30070 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
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 C IRS990ScheduleC
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form4720 Filed Section4955 Tax | false | Form4720FiledSection4955TaxInd |
| Correction Made | false | CorrectionMadeInd |
| Form4720 Filed | false | Form4720FiledInd |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $169,679 | CurrentYearMinus3Amt |
| Current Year Minus2 | $150,444 | CurrentYearMinus2Amt |
| Current Year Minus1 | $196,436 | CurrentYearMinus1Amt |
| Total | $516,559 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $774,839 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $100,774 | CurrentYearMinus3Amt |
| Current Year Minus2 | $5,000 | CurrentYearMinus2Amt |
| Current Year Minus1 | $698 | CurrentYearMinus1Amt |
| Total | $106,472 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $42,420 | CurrentYearMinus3Amt |
| Current Year Minus2 | $37,611 | CurrentYearMinus2Amt |
| Current Year Minus1 | $49,109 | CurrentYearMinus1Amt |
| Total | $129,140 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $193,710 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus1 | $698 | CurrentYearMinus1Amt |
| Total | $698 | TotalAmt |
Schedule D IRS990ScheduleD
Leasehold Improvements LeaseholdImprovementsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Investment Cost Or Other Basis | $30,921 | InvestmentCostOrOtherBasisAmt |
| Depreciation | $24,465 | DepreciationAmt |
| Book Value | $6,456 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Investment Cost Or Other Basis | $67,636 | InvestmentCostOrOtherBasisAmt |
| Depreciation | $59,928 | DepreciationAmt |
| Book Value | $7,708 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $14,164 | TotalBookValueLandBuildingsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | Accrued payroll liabilities | Desc |
| Amt | $23,478 | Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $23,478 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $1,762,563 | TotalRevEtcAuditedFinclStmtAmt |
| Other Revenue | $45,000 | OtherRevenueAmt |
| Revenue Not Reported | $45,000 | RevenueNotReportedAmt |
| Revenue Subtotal | $1,717,563 | RevenueSubtotalAmt |
| Other Revenues Not Included | $70,000 | OtherRevenuesNotIncludedAmt |
| Revenue Not Reported Fincl Stmt | $70,000 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $1,787,563 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $1,699,639 | TotExpnsEtcAuditedFinclStmtAmt |
| Expenses Subtotal | $1,699,639 | ExpensesSubtotalAmt |
| Total Expenses Per Form990 | $1,699,639 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Part X : FIN48 Footnote | Income TaxesFinancial statement presentation follows the recommendations of ASC 740, Income Taxes. Under ASC 740, the Foundation is required to report information regarding its exposure to various tax positions taken by the Foundation and requires a two-step process that separates recognition from measurement. The first step is determining whether a tax position has met the recognition threshold; the second step is measuring a tax position that meets the recognition threshold. Management believes that the Foundation has adequately evaluated its current tax positions and has concluded that as of December 31, 2015, the Foundation does not have any uncertain tax positions for which a reserve or an accrual for a tax liability would be necessary.The Foundation has received notification from the Internal Revenue Service and the State of California that it qualifies for tax-exempt status under Section 501(c)(3) of the Internal Revenue Code and Section 23701d of the California Revenue and Taxation Code. The exemptions are subject to periodic review by the federal and state taxing authorities and management is confident that the Foundation continues to satisfy all federal and state statutes in order to qualify for continued tax exemption status. The Foundation may periodically receive unrelated business income (such as sublease rental income) requiring the Foundation to file separate tax returns under federal and state statutes. Under such conditions, the Foundation calculates and accrues the applicable taxes. |
| Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 | Net assets released from restrictions $45000 |
| Part XI, Line 4b: Other revenue amounts included on 990 but not included in F/S | Temp Restricted Contributions $70000 |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|---|
| Canada | 0 | 0 | Disease Research | Grant Award | $0 |
| France | 0 | 0 | Disease Research | Grant Award | $10,899 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Spent | $10,899 | SubtotalSpentAmt |
| Total Spent | $10,899 | TotalSpentAmt |
| 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 (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Part I, Line 2 - Grantmakers Explanation For Monitoring Use of Funds Outside US | A budget is prepared in advance of all grants earmarked for nternational recipients. Individuals working in the designated foreign countries provide ongoing reports regarding progress of work. Expenditures are made against budget amounts and analyzed continuously by US-based management. Discussions, e-mails, and other techniques of communication are employed to ensure that funds are utilized according to the original intent. Accomplishments are documented in writing and submitted by field volunteers to the head office. |
| Part I, Line 3f - Method of Accounting | Cash basis method of accounting is used for grants to foreign entities. |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | false | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (5 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt |
|---|---|---|---|---|---|---|---|
| Dominican University | |||||||
| 50 Acacia Avenue | San Rafael | CA | 94901 | 941156525 | 501(c)(3) | $6,900 | $0 |
| Global Genes Project | |||||||
| 28 Argonaut Suite 150 | Aliso Viejo | CA | 92656 | 263331487 | 501(c)(3) | $10,000 | $0 |
| Manhattan Institute | |||||||
| 52 Vanderbilt Ave 201 | New York | NY | 10017 | 132912529 | 501(c)(3) | $20,000 | $0 |
| Nobe Fine Art | |||||||
| 10710 Sevenhills Drive | TUJUNGA | CA | 91042 | $10,664 | $0 | ||
| Research America | |||||||
| 1101 King Street | Alexandria | VA | 22314 | 521609875 | 501(c)(3) | $5,500 | $0 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 4 | Total501c3OrgCnt |
| Total Other Org | 1 | TotalOtherOrgCnt |
Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Type | Awards and Scholarships | GrantTypeTxt |
| Recipient | 100 | RecipientCnt |
| Cash Grant | $52,900 | CashGrantAmt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Severance Payment | false | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | false | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | false | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | false | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | false | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | false | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | false | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | false | AnyNonFixedPaymentsInd |
| Initial Contract Exception | false | InitialContractExceptionInd |
| Rebuttable Presumption Proc | false | RebuttablePresumptionProcInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Julia Jenkins | PersonNm |
| Title | Secretary & E.D | TitleTxt |
| Base Compensation Filing Org | $147,000 | BaseCompensationFilingOrgAmt |
| Nontaxable Benefits Filing Org | $5,426 | NontaxableBenefitsFilingOrgAmt |
| Total Compensation Filing Org | $152,426 | TotalCompensationFilingOrgAmt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (7 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Form 990, Part III, Line 4d: Other Program Services Description | OTHER PROGRAM SERVICES 4: Everylife Foundation (continued from Form 990 Page 2)Administration (FDA), and National Institutes of Health (NIH) to improve the clinical development process through our CureTheProcess Campaign, Rare Disease Workshop Series, and legislation.The Foundation was the driving force behind the grassroots movement that ensured the ULTRA/FAST language, to improve access to the FDAs Accelerated Approval pathway for rare diseases, was included into the FDASIA final bill, which was signed by the President in July of 2012. The Foundation is working with rare disease stakeholders, Congress and the FDA to ensure the timely implementation of the legislation.While the Foundation remains mainly focused on regulatory issues, it also works to grow the rare disease community by spearheading programs that fulfill unmet need for patients and by supporting other organizations working to help empower the rare disease community. |
| Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et | Jenny Soriano, M.D., a member of the Board of Directors, is the wife of Emil D. Kakkis, M.D., President and Founder of the organization. |
| Form 990, Part VI, Line 11b: Form 990 Review Process | FORM 990 IS PREPARED BY AN OUTSIDE TAX PROFESSIONAL. THE FORM IS THEN REVIEWED BYTHE ORGANIZATION'S MANAGEMENT, A MEMBER OF THE BOARD OF DIRECTORS, AND THE EXECUTIVEDIRECTOR. THIS GROUP OF INDIVIDUALS THEN DISCUSSES THE CONTENTS OF THE RETURN WITHTHE OUTSIDE TAX PROFESSIONAL. AFTER A FULL REVIEW (WITH MODIFICATIONS WHERENECESSARY), THE FINAL VERSION OF THE TAX RETURN IS PROVIDED TO ALL MEMBERS OF THE ORGANIZATION'S VOTING BODY. A REPRESENTATIVE OF MANAGEMENT AUTHORIZES THE FINAL FORM 990 WHICH IS THEN E-FILED WITH THE INTERNAL REVENUE SERVICE. |
| Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts | MEMBERS OF THE BOARD OF DIRECTORS REVIEW ALL POTENTIAL CONFLICTS OF INTEREST ATLEAST ANNUALLY. ALL PERSONNEL AND BOARD MEMBERS ARE REQUIRED TO DISCLOSE (INWRITING) POTENTIAL CONFLICTS AND ANY RELATED PARTY AFFILIATIONS. LOANS BETWEEN THEORGANIZATION AND MEMBERS OF MANAGEMENT AND THE BOARD ARE STRICTLY PROHIBITED. THEORGANIZATION SEEKS FULL TRANSPARENCY ON ALL RELATIONSHIPS. ANY POTENTIAL CONFLICTS (IN FACT OR APPEARANCE) ARE DISCUSSED OPENLY AND RESOLVED IN ACCORDANCE WITH THE ORGANIZATION'S POLICIES AND PROCEDURES. |
| Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top Management | MEMBERS OF THE BOARD OF DIRECTORS REVIEW THE COMPENSATION OF ALL HIGH-LEVEL PERSONNEL PERIODICALLY IN ACCORDANCE WITH IRS RULES AND REGULATIONS. EFFORTS ARE MADE TO SECURE COMPENSATION DATA FROM INDUSTRY SOURCES IN ORDER TO DETERMINE COMPETITIVENESS AND APPROPRIATENESS OF SALARIES. EVERY EFFORT IS MADE TO ENSURE THAT THE PROCESS IS THOROUGH AND TRANSPARENT IN ACCORDANCE WITH IRS GUIDELINES AND THE ORGANIZATION'S POLICIES AND PROCEDURES. |
| Form 990, Part VI, Line 15b: Compensation Review and Approval Process for Officers and Key Employees | COMPENSATION OF OTHER HIGH-LEVEL PERSONNEL AND KEY EMPLOYEES IS REVIEWED PERIODICALLY BY MEMBERS OF MANAGEMENT. EFFORTS ARE MADE TO SECURE COMPENSATION DATA FROM INDUSTRY SOURCES IN ORDER TO DETERMINE COMPETITIVENESS AND APPROPRIATENESS OF SALARIES AND ALL RELATED BENEFITS. ALL DECISIONS ARE THEN DOCUMENTED IN PERSONNEL FILES. |
| Form 990, Part VI, Line 19: Other Organization Documents Publicly Available | ALL OF THE ORGANIZATION'S GOVERNING DOCUMENTS, FINANCIAL STATEMENTS AND OTHER LEGALFILINGS ARE MAINTAINED IN A SECURE ENVIRONMENT AND HELD AVAILABLE FOR INSPECTION BYTAX AUTHORITIES AND THE GENERAL PUBLIC. TAX RETURNS ARE POSTED ANNUALLY TOWWW.GUIDESTAR.ORG (WHERE THEY ARE AVAILABLE FOR VIEWING AS ELECTRONIC COPIES) AND ARE ALSO AVAILABLE FOR A PHYSICAL INSPECTION AT THE ORGANIZATION'S OFFICE IN NOVATO, CALIFORNIA. |