GLOBAL GENES: Form 990, tax year 2019
View the entire original 990 at ProPublica ↗
- Organization
- GLOBAL GENES (EIN 26-3331487)
- Tax period
- 2019-01-01 to 2019-12-31
- Filed
- 2020-11-09
- IRS object ID
- 202033149349304218
- Schema version
- 2019v5.0
- 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 | 2020-11-09T15:04:30-08:00 | ReturnTs |
| Tax Period End | 2019-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 410746749 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CLIFTONLARSONALLEN LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 2875 MICHELLE STE 300 | AddressLine1Txt |
| City | IRVINE | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 926061020 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2019-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 263331487 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Global Genes | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | GLOB | BusinessNameControlTxt |
| Phone | 9492487273 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 28 Argonaut Suite 140 150 | AddressLine1Txt |
| City | Aliso Viejo | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 92656 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Peter Pellizzon | PersonNm |
| Person Title | Chairman | PersonTitleTxt |
| Signature | 2020-11-09 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | Christina M Wenk CPA | PreparerPersonNm |
| PTIN | P01255081 | PTIN |
| Phone | 7149781300 | PhoneNum |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2019 | TaxYr |
| Build TS | 2021-01-29 14:40:06Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | Kimberly Haugstad | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 28 Argonaut Suite 140 150 | AddressLine1Txt |
| City | Aliso Viejo | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 92656 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $6,988,193 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | globalgenes.org | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2008 | FormationYr |
| Legal Domicile State | CA | LegalDomicileStateCd |
| Activity Or Mission | Increase public awareness for rare disease and globally connect, empower and educate individuals and rare disease foundations in person, print and online. | ActivityOrMissionDesc |
| Voting Members Governing Body | 12 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 9 | VotingMembersIndependentCnt |
| Total Employee | 24 | TotalEmployeeCnt |
| Total Volunteers | 50 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| PY Contributions Grants | $4,955,803 | PYContributionsGrantsAmt |
| CY Contributions Grants | $5,297,898 | CYContributionsGrantsAmt |
| CY Program Service Revenue | $1,667,194 | CYProgramServiceRevenueAmt |
| PY Investment Income | $1,250 | PYInvestmentIncomeAmt |
| CY Investment Income | $23,101 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$26,121 | PYOtherRevenueAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $4,930,932 | PYTotalRevenueAmt |
| CY Total Revenue | $6,988,193 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $379,628 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $695,910 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $1,499,844 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $2,036,801 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $200,016 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $2,596,954 | PYOtherExpensesAmt |
| CY Other Expenses | $3,731,996 | CYOtherExpensesAmt |
| PY Total Expenses | $4,476,426 | PYTotalExpensesAmt |
| CY Total Expenses | $6,464,707 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $454,506 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $523,486 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $1,746,498 | TotalAssetsBOYAmt |
| Total Assets EOY | $2,925,050 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $330,560 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $1,283,097 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $1,415,938 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $1,641,953 | NetAssetsOrFundBalancesEOYAmt |
| Mission | Global Genes mission is to connect, empower and inspire the rare disease community. | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $5,702,811 | ExpenseAmt |
| Grant | $695,910 | GrantAmt |
| Revenue | $1,667,194 | RevenueAmt |
| Desc | Outreach servicesProvide capacity building educational and connective networking opportunities to patients, caregivers and disease foundations via in person meetings, print and online tools and online education. | Desc |
| Total Program Service Expenses | $5,702,811 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | false | LobbyingActivitiesInd |
| Subject To Proxy Tax | false | SubjectToProxyTaxInd |
| Donor Advised Fund | false | DonorAdvisedFundInd |
| Conservation Easements | false | ConservationEasementsInd |
| Collections Of Art | false | CollectionsOfArtInd |
| Credit Counseling | false | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | false | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | 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 | false | ForeignOfficeInd |
| Foreign Activities | Yes (true) | ForeignActivitiesInd |
| More Than5000 K To Org | false | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | Yes (true) | 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 |
| Engaged In Excess Benefit Trans | false | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | false | PYExcessBenefitTransInd |
| Loan Outstanding | false | LoanOutstandingInd |
| Grant To Related Person | false | GrantToRelatedPersonInd |
| Business Rln With Org Mem | false | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | false | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | false | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | false | DeductibleNonCashContriInd |
| Deductible Art Contribution | false | DeductibleArtContributionInd |
| Terminate Operations | false | TerminateOperationsInd |
| Partial Liquidation | false | PartialLiquidationInd |
| Disregarded Entity | false | DisregardedEntityInd |
| Related Entity | false | RelatedEntityInd |
| Related Organization Ctrl Ent | false | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | false | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | false | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (true) | ScheduleORequiredInd |
| IRP Document | 21 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (true) | BackupWthldComplianceInd |
| Employee | 24 | 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 |
| 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 |
| Indoor Tanning Services | false | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | false | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | false | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 12 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 9 | IndependentVotingMemberCnt |
| Family Or Business Rln | false | 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 |
| Own Website | Yes (X) | OwnWebsiteInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Fohrman Fohrman | PersonNm |
| Phone | 9494580836 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 23232 Peralta Suite 222 | AddressLine1Txt |
| City | Laguna Hills | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 92653 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (17 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 |
|---|---|---|---|---|---|---|---|
| Nicole Boice | |||||||
| Founder | 40.00 | 0.00 | Yes (X) | Yes (X) | $197,997 | $0 | $0 |
| Christian Rubio | |||||||
| VP Strategic Advancement | 40.00 | 0.00 | $163,935 | $0 | $0 | ||
| Tiffany Leite | |||||||
| COO | 40.00 | 0.00 | Yes (X) | $152,988 | $0 | $0 | |
| Craig Martin | |||||||
| Strategic Advis | 40.00 | 0.00 | Yes (X) | Yes (X) | $135,000 | $0 | $0 |
| Mary K O'Connor | |||||||
| Dir. Corporate Eng | 40.00 | 0.00 | $125,375 | $0 | $0 | ||
| Kimberly Haugstad | |||||||
| CEO | 40.00 | 0.00 | Yes (X) | Yes (X) | $112,838 | $0 | $0 |
| Angie Rowe | |||||||
| Interim ED | 50.00 | 0.00 | $101,258 | $0 | $0 | ||
| Melissa Strodtbeck | |||||||
| Fin. Director | 40.00 | 0.00 | Yes (X) | $82,795 | $0 | $0 | |
| Caroline Loewy | |||||||
| Director | 1.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| John Crowley | |||||||
| Director | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Natalie Douglas | |||||||
| Vice Chairman | 5.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Hugh Hempel | |||||||
| Director | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Peter Pellizzon | |||||||
| Treasurer | 1.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Brad Marcus | |||||||
| Director | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Wendy White | |||||||
| Chairman | 5.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Susan Stein | |||||||
| Director | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Nauman Shah | |||||||
| Director | 1.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $1,072,186 | TotalReportableCompFromOrgAmt |
| Indiv Rcvd Greater Than100 K | 7 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | Yes (true) | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (true) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (5 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| Sheraton San Diego Hotel | |||||
| 1380 Harbor Island Dr | San Diego | CA | 92101 | Meeting Services | $646,142 |
| Key Events | |||||
| 220 Montgomery St 1300 | San Francisco | CA | 94104 | Travel Agency | $207,776 |
| Rithm Health | |||||
| 54 Morton St | Andover | MA | 01810 | Strategy Consultant | $142,006 |
| Korn Ferry | |||||
| PO Box 1450 | Minneapolis | MN | 55485 | Executive Search | $128,839 |
| Levine Media | |||||
| 21 Kingston Rd | Kesington | CA | 94707 | Editorial Services | $112,705 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 6 | CntrctRcvdGreaterThan100KCnt |
| All Other Contributions | $5,297,898 | AllOtherContributionsAmt |
| Total Contributions | $5,297,898 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (3 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| Conference sponsorships | 900099 | $350,500 | $350,500 |
| Exhibit booths | 900099 | $106,194 | $106,194 |
| Membership fees | 900099 | $1,210,500 | $1,210,500 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $1,667,194 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $23,101 | TotalRevenueColumnAmt |
| Exclusion | $23,101 | ExclusionAmt |
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 | $6,988,193 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $1,667,194 | RelatedOrExemptFuncIncomeAmt |
| Exclusion | $23,101 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $501,733 | TotalAmt |
| Program Services | $501,733 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $69,371 | TotalAmt |
| Program Services | $69,371 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $124,806 | TotalAmt |
| Program Services | $124,806 | 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 | $811,810 | TotalAmt |
| Program Services | $593,875 | ProgramServicesAmt |
| Management And General | $178,777 | ManagementAndGeneralAmt |
| Fundraising | $39,158 | 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 | $1,070,497 | TotalAmt |
| Program Services | $975,451 | ProgramServicesAmt |
| Management And General | $54,232 | ManagementAndGeneralAmt |
| Fundraising | $40,814 | 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 | $0 | TotalAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $154,494 | TotalAmt |
| Program Services | $128,805 | ProgramServicesAmt |
| Management And General | $19,125 | ManagementAndGeneralAmt |
| Fundraising | $6,564 | 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 | $41,013 | TotalAmt |
| Program Services | $19,527 | ProgramServicesAmt |
| Management And General | $21,486 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
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 | $95,284 | TotalAmt |
| Program Services | $15,435 | ProgramServicesAmt |
| Management And General | $79,849 | ManagementAndGeneralAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Royalties RoyaltiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $114,887 | TotalAmt |
| Program Services | $95,784 | ProgramServicesAmt |
| Management And General | $14,222 | ManagementAndGeneralAmt |
| Fundraising | $4,881 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $290,376 | TotalAmt |
| Program Services | $213,885 | ProgramServicesAmt |
| Management And General | $49,210 | ManagementAndGeneralAmt |
| Fundraising | $27,281 | FundraisingAmt |
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 | $600,897 | TotalAmt |
| Program Services | $599,292 | ProgramServicesAmt |
| Fundraising | $1,605 | 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 | $58,606 | TotalAmt |
| Program Services | $48,861 | ProgramServicesAmt |
| Management And General | $7,255 | ManagementAndGeneralAmt |
| Fundraising | $2,490 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $13,924 | TotalAmt |
| Program Services | $9,346 | ProgramServicesAmt |
| Management And General | $4,102 | ManagementAndGeneralAmt |
| Fundraising | $476 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| Outside Services | $923,496 | $825,017 | $47,612 | $50,867 |
| Funded Travel for Patients | $916,393 | $916,393 | ||
| Printing and Publications | $159,649 | $153,878 | $575 | $5,196 |
| program awareness | $129,770 | $129,770 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $387,701 | TotalAmt |
| Program Services | $281,582 | ProgramServicesAmt |
| Management And General | $85,435 | ManagementAndGeneralAmt |
| Fundraising | $20,684 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,464,707 | TotalAmt |
| Program Services | $5,702,811 | ProgramServicesAmt |
| Management And General | $561,880 | ManagementAndGeneralAmt |
| Fundraising | $200,016 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,105,306 | BOYAmt |
| EOY | $2,405,810 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $155,964 | BOYAmt |
| EOY | $147,808 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $22,161 | BOYAmt |
| EOY | $6,910 | 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) |
|---|---|---|
| BOY | $8,302 | BOYAmt |
| EOY | $7,320 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $240,056 | BOYAmt |
| EOY | $196,590 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $295,961 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $145,336 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $204,722 | BOYAmt |
| EOY | $150,625 | 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 | $9,987 | BOYAmt |
| EOY | $9,987 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,746,498 | BOYAmt |
| EOY | $2,925,050 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $209,819 | BOYAmt |
| EOY | $322,199 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,501 | BOYAmt |
| EOY | $725,611 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $118,240 | BOYAmt |
| EOY | $235,287 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $330,560 | BOYAmt |
| EOY | $1,283,097 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $879,974 | BOYAmt |
| EOY | $1,494,144 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $535,964 | BOYAmt |
| EOY | $147,809 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,415,938 | BOYAmt |
| EOY | $1,641,953 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,746,498 | BOYAmt |
| EOY | $2,925,050 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | $523,486 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $7,529 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | -$305,000 | OtherChangesInNetAssetsAmt |
| 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 | $3,585,077 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,892,521 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,076,960 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $4,955,803 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,297,898 | CurrentTaxYearAmt |
| Total | $21,808,259 | 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 | $3,585,077 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,892,521 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,076,960 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $4,955,803 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,297,898 | CurrentTaxYearAmt |
| Total | $21,808,259 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $2,267,265 | SubstantialContributorsTotAmt |
| Public Support Total170 | $19,540,994 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus1 Year | $1,250 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $23,101 | CurrentTaxYearAmt |
| Total | $24,351 | 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 | $21,832,610 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $1,667,194 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.89500 | PublicSupportCY170Pct |
| Public Support PY170 | 0.94670 | 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 D IRS990ScheduleD
Leasehold Improvements LeaseholdImprovementsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $10,314 | OtherCostOrOtherBasisAmt |
| Depreciation | $8,907 | DepreciationAmt |
| Book Value | $1,407 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $260,275 | OtherCostOrOtherBasisAmt |
| Depreciation | $118,352 | DepreciationAmt |
| Book Value | $141,923 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $25,372 | OtherCostOrOtherBasisAmt |
| Depreciation | $18,077 | DepreciationAmt |
| Book Value | $7,295 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $150,625 | TotalBookValueLandBuildingsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | Accrued Liabilities | Desc |
| Amt | $235,287 | Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $235,287 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $7,102,322 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $7,529 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $23,445 | DonatedServicesAndUseFcltsAmt |
| Other Revenue | $83,155 | OtherRevenueAmt |
| Revenue Not Reported | $114,129 | RevenueNotReportedAmt |
| Revenue Subtotal | $6,988,193 | RevenueSubtotalAmt |
| Total Revenue Per Form990 | $6,988,193 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $6,488,152 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $23,445 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $23,445 | ExpensesNotReportedAmt |
| Expenses Subtotal | $6,464,707 | ExpensesSubtotalAmt |
| Total Expenses Per Form990 | $6,464,707 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Part X : FIN48 Footnote | The organization does not believe there are any material uncertain tax positions, and accordingly, it has not recognized any liability for unrecognized tax benefits or any related interest or penalties. |
| Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 | Net Assets released from restrictions $83155 |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (5 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Region Total ExpendituresRegionTotalExpendituresAmt | Specific Services ProvidedSpecificServicesProvidedTxt |
|---|---|---|---|---|---|
| Canada | 0 | 0 | Contribution/ Scholarship | $52,695 | |
| Europe | 0 | 0 | Program Service/ Assistance | $42,011 | Travel Assistance |
| Asia | 0 | 0 | Program Service/ Assistance | $11,300 | Travel Assistance |
| Australia/New Zeland | 0 | 0 | Program Service/ Assistance | $14,500 | Travel Assistance |
| South America | 0 | 0 | Program Service/ Assistance | $4,300 | Travel Assistance |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Spent | $124,806 | SubtotalSpentAmt |
| Total Spent | $124,806 | TotalSpentAmt |
Foreign Individuals Grants ForeignIndividualsGrantsGrp (18 entries)
| Type Of AssistanceTypeOfAssistanceTxt | RegionRegionTxt | RecipientRecipientCnt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|---|---|
| Program Expense - videography | Canada | 3 | $40,902 | Wire |
| Program service donation | Australia | 1 | $5,000 | Wire |
| Speaker expense | Canada | 6 | $2,093 | Check |
| Strategic consulting | UK | 9 | $15,306 | Wire |
| Tech services | India | 1 | $1,800 | Wire |
| Travel assistance | Australia | 5 | $9,500 | Wire |
| Travel assistance | Canada | 11 | $9,700 | Check |
| Travel assistance | France | 1 | $600 | Wire |
| Travel assistance | India | 2 | $2,500 | Wire |
| Travel assistance | Ireland | 1 | $2,000 | Wire |
| Travel assistance | Italy | 2 | $3,400 | Wire |
| Travel assistance | Malaysia | 1 | $2,500 | Wire |
| Travel assistance | Pakistan | 1 | $2,500 | Wire |
| Travel assistance | Scotland | 1 | $2,500 | Wire |
| Travel assistance | Switzerland | 1 | $9,105 | Wire |
| Travel Assistance | Brazil | 2 | $4,300 | Wire |
| Travel Assistance | Malta | 1 | $2,000 | Wire |
| Travel assitance | UK | 4 | $9,100 | Wire |
| Field | Value | IRS element (for citing) |
|---|---|---|
| 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part I, Line 2 - Grantmakers Explanation For Monitoring Use of Funds Outside US | FormAndLineReferenceDesc |
| Explanation | Scholarships/prizes do not require monitoring, as there are no ongoing conditions after it has been awarded. | ExplanationTxt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (31 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Valuation Method UsedValuationMethodUsedDesc | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|---|
| Angel Aid Cares | ||||||||
| 773 Center Blvd 464 | Fairfax | CA | 94030 | 832660329 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| CFC Intl | ||||||||
| 500 State St | Chicago Heights | IL | 60411 | 161569293 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Champ1 Research Foundation | ||||||||
| 1367 Whitewood Ave | Spring Hill | FL | 34609 | 830516268 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Childrens Cardiomyopathy Fdn | ||||||||
| PO Box 547 | Tenafly | NJ | 07670 | 752986661 | $8,000 | $0 | Book | Rare Patient Impact Grant |
| Cold Agglutinin Disease Found | ||||||||
| 1874 Marlton Pike E Ste 4 | Cherry Hill | NJ | 08003 | 842650853 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Congenital Hyperinsulinism | ||||||||
| PO Box 135 | Glen Ridge | NJ | 07028 | 203068945 | $15,000 | $0 | Book | Rare Patient Impact Grant |
| Cure CMD | ||||||||
| 3217 E Carson St 1014 | Lakewood | CA | 90712 | 262640975 | $15,000 | $0 | Book | Rare Patient Impact Grant |
| Fibrous Dysplacia Foundation | ||||||||
| 2885 Sanford Ave 40754 | Grandville | MI | 49418 | 020715210 | $8,640 | $0 | Book | Rare Patient Impact Grant |
| Foundation for Sarcoidosis Re | ||||||||
| 1820 W Webster ave 304 | Chicago | IL | 60614 | 364378232 | $12,000 | $0 | Book | Rare Patient Impact Grant |
| Global Impact for Mission Cur | ||||||||
| 1199 North Fairfax St 300 | Alexandria | VA | 22314 | 521273585 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Ints Fibrod Ossificans Prog | ||||||||
| 101 The City Dr S | Orange | CA | 92868 | 592918100 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Koolen-de Vries Syndrome | ||||||||
| PO Box 470218 | Fort Worth | TX | 76147 | 423208388 | $6,000 | $0 | Book | Rare Patient Impact Grant |
| Lipodystrophy United | ||||||||
| 22 Frances Rd | Los Lunas | NM | 87031 | 461165699 | $12,875 | $0 | Book | Rare Patient Impact Grant |
| Littlest tumor Foundation | ||||||||
| PO Box 7051 | Appleton | WI | 54912 | 270917237 | $8,000 | $0 | Book | Rare Patient Impact Grant |
| Mast Cell Hope Inc | ||||||||
| 73 Huckleberry Lane | Southington | CT | 06489 | 834544114 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Mickies Miracles | ||||||||
| 6675 S Tenaya Way 200 | Las Vegas | NV | 89113 | 813470196 | $10,000 | $0 | Book | Sponsorship |
| National PKU News | ||||||||
| 6869 Woodlawn Ave NE 116 | Seattle | WA | 98115 | 943098601 | $15,000 | $0 | Book | Rare Patient Impact Grant |
| Organization for Rare Disease | ||||||||
| 3501 Via del Prado | Calabasas | CA | 91302 | 814688753 | $37,500 | $0 | Book | General donation |
| Our Odyssey | ||||||||
| 95 Pine Street 17th Floor | New York | NY | 10005 | 841853376 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Prog Familial Intrahepatic Ch | ||||||||
| 28 Argonaut 140-150 | Aliso Viejo | CA | 92656 | 831084501 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Rare X | ||||||||
| 7 Stonebrook | Aliso Viejo | CA | 92656 | 842298259 | $118,018 | $0 | Book | General Assistance |
| SATB2 Gene Foundation | ||||||||
| 3050 Five Forks Trickum Rd D5 | Lilburn | GA | 30047 | 823474637 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Scleroderma FDN | ||||||||
| 8929 S Sepulveda Blvd 412 | Los Angeles | CA | 90045 | 521375827 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Stone Soup Group | ||||||||
| 307 E Northern Lights Blvd 10 | Anchorage | AK | 99503 | 920149995 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| TEAM 4 Travis | ||||||||
| PO Box 361 | Litchfield Park | AZ | 85340 | 833419579 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Team Telomere | ||||||||
| 1562 First Ave 205 | New York | NY | 10028 | 263776187 | $8,500 | $0 | Book | Rare Patient Impact Grant |
| The Brain Recovery Project | ||||||||
| 969 Colorado Blvd 101 | Los Angeles | CA | 90041 | 452571898 | $14,200 | $0 | Book | Rare Patient Impact Grant |
| The Global FDN for Peroxisoma | ||||||||
| 5321 S Sheridan Rd 26a | Tulsa | OK | 74145 | 273646193 | $13,000 | $0 | Book | Rare Patient Impact Grant |
| The Myositis Assoc | ||||||||
| 2000 Duke St 300 | Alexandria | VA | 22314 | 541660976 | $15,000 | $0 | Book | Rare Patient Impact Grant |
| TN PKU Foundation | ||||||||
| 1201 W La Veta Ave | Orange | CA | 92868 | 208160776 | $15,000 | $0 | Book | Rare Patient Impact Grant |
| Turner Syndrome Global Allian | ||||||||
| 10708 W 129th St | Overland Park | KS | 66213 | 465424047 | $10,000 | $0 | Book | Rare Patient Impact Grant |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 31 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Type | Scholarship Patient Advocacy | GrantTypeTxt |
| Recipient | 109 | RecipientCnt |
| Cash Grant | $69,371 | CashGrantAmt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Grantmaker's Description of How Grants are Used | FormAndLineReferenceDesc |
| Explanation | Scholarships/prizes do not require monitoring, as there are no ongoing conditions after it has been awarded. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Written Employment Contract | Yes (X) | WrittenEmploymentContractInd |
| Compensation Survey | Yes (X) | CompensationSurveyInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| 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 |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (4 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt |
|---|---|---|
| Angie Rowe | ||
| Interim ED | $101,258 | $101,258 |
| Christian Rubio | ||
| VP Strategic Advancement | $163,935 | $163,935 |
| Nicole Boice | ||
| Founder | $197,997 | $197,997 |
| Tiffany Leite | ||
| COO | $152,988 | $152,988 |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Form 990, Part VI, Line 11b: Form 990 Review Process | Form 990 is sent to all Board of Directors members for their review and approval before filing. |
| Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts | Board of Directors members are required to file a signed conflict of interest agreement annually. |
| Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top Management | Board reviews and approves by vote all executive salaries on an annual basis during closed session of the first Board of Directors meeting of the year |
| Form 990, Part VI, Line 15b: Compensation Review and Approval Process for Officers and Key Employees | Board reviews and approves by vote all other officer's salaries on an annual basis during closed session of the first Board of Directors meeting of the year |
| Form 990, Part VI, Line 19: Other Organization Documents Publicly Available | The organization makes its governing documents and financial statements available on its own website. |
| Other Changes In Net Assets Or Fund Balances - Other Decreases | Adjustment on adoption of new accounting standard = -$305000 |
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