FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS: Form 990, tax year 2021
View the entire original 990 at ProPublica ↗
- Organization
- FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS (EIN 26-3160079)
- Tax period
- 2021-01-01 to 2021-12-31
- Filed
- 2022-11-15
- IRS object ID
- 202243199349320789
- Schema version
- 2021v4.2
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule D
- Schedule G
- Schedule I
- Schedule J
- Schedule M
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2022-11-15T15:18:28-06:00 | ReturnTs |
| Tax Period End | 2021-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 453950334 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | HEGRE MCMAHON & SCHIMMEL LLC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 600 ENTERPRISE DRIVE STE 109 | AddressLine1Txt |
| City | OAK BROOK | CityNm |
| State Abbreviation | IL | StateAbbreviationCd |
| ZIP | 60523 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2021-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 263160079 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FOUNDATION FOR ANGELMAN SYNDROME | BusinessNameLine1Txt |
| Business Name Line2 | THERAPEUTICS | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | FOUN | BusinessNameControlTxt |
| Phone | 8667830078 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 40307 | AddressLine1Txt |
| City | AUSTIN | CityNm |
| State Abbreviation | TX | StateAbbreviationCd |
| ZIP | 78704 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | JOHN SCHLUETER | PersonNm |
| Person Title | CHAIRPERSON | PersonTitleTxt |
| Phone | 8667830078 | PhoneNum |
| Signature | 2022-11-15 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Signing Officer SigningOfficerGrp
Person Full Name PersonFullName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person First | JOHN | PersonFirstNm |
| Person Last | SCHLUETER | PersonLastNm |
| Field | Value | IRS element (for citing) |
|---|---|---|
| SSN | 999009999 | SSN |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | SEAN MCMAHON | PreparerPersonNm |
| PTIN | P00350296 | PTIN |
| Phone | 3123456200 | PhoneNum |
| Preparation | 2022-11-15 | PreparationDt |
Additional Filer Information AdditionalFilerInformation
Trusted Customer TrustedCustomerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Trusted Customer | 3 | TrustedCustomerCd |
| Authentication Assurance Level | AAL1 | AuthenticationAssuranceLevelCd |
| Identity Assurance Level | IAL1 | IdentityAssuranceLevelCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2021 | TaxYr |
| Build TS | 2022-09-23 18:48:47Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Change | Yes (X) | AddressChangeInd |
| Principal Officer | JOHN SCHLUETER | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 608 | AddressLine1Txt |
| City | DOWNERS GROVE | CityNm |
| State Abbreviation | IL | StateAbbreviationCd |
| ZIP | 60515 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $27,289,390 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.CUREANGELMAN.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2008 | FormationYr |
| Legal Domicile State | IL | LegalDomicileStateCd |
| Activity Or Mission | THE FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS (FAST) IS DEDICATED TO FINDING A CURE FOR ANGELMAN SYNDROME (AS) AND RELATED DISORDERS THROUGH THE FUNDING OF AN AGGRESSIVE RESEARCH AGENDA, EDUCATION, AWARENESS, AND ADVOCACY. | ActivityOrMissionDesc |
| Voting Members Governing Body | 12 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 11 | VotingMembersIndependentCnt |
| Total Employee | 6 | TotalEmployeeCnt |
| Total Volunteers | 85 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $3,391,715 | PYContributionsGrantsAmt |
| CY Contributions Grants | $5,782,149 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $8,096 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $4,011 | CYProgramServiceRevenueAmt |
| PY Investment Income | -$436,697 | PYInvestmentIncomeAmt |
| CY Investment Income | -$181,056 | CYInvestmentIncomeAmt |
| PY Other Revenue | $6,394,540 | PYOtherRevenueAmt |
| CY Other Revenue | -$1,627,617 | CYOtherRevenueAmt |
| PY Total Revenue | $9,357,654 | PYTotalRevenueAmt |
| CY Total Revenue | $3,977,487 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $2,401,977 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $3,910,364 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $296,128 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $641,663 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $220,829 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $354,290 | PYOtherExpensesAmt |
| CY Other Expenses | $1,283,338 | CYOtherExpensesAmt |
| PY Total Expenses | $3,052,395 | PYTotalExpensesAmt |
| CY Total Expenses | $5,835,365 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $6,305,259 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$1,857,878 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $18,338,531 | TotalAssetsBOYAmt |
| Total Assets EOY | $17,749,994 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $2,419,923 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $3,354,892 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $15,918,608 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $14,395,102 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | ANGELMAN SYNDROME (AS) IS A NEURODEVELOPMENTAL DISORDER CHARACTERIZED BY GLOBAL DEVELOPMENT DELAYS AND SEVERE SPEECH IMPAIRMENT. A FEW INDIVIDUALS WITH AS DEVELOP FUNCTIONAL SPEECH, BUT MOST COMMUNICATE THROUGH A MIXTURE OF GESTURES, EYE GAZE, ADAPTED SIGN LANGUAGE AND AUGUMENTATIVE COMMUNICATION DEVICES. INDIVIDUALS WITH AS HAVE DEVELOPMENT DELAY AND INTELLECTUAL DISABILITIES. CURRENT RESEARCH SUGGESTS THAT NEURONAL DEVELOPMENT OCCURS CORRECTLY IN AS, BUT NEURONAL FUNCTIONING IS IMPAIRED. THIS NEURONAL IMPAIRMENT IMPACTS THE INDIVIDUAL'S ABILITY TO LEARN IN THAT SKILLS ARE ACQUIRED LESS RAPIDLY THAN IN AGE-MATCHED PEERS. THE FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS IS AN ORGANIZATION OF FAMILIES AND PROFESSIONALS DEDICATED TO FINDING A CURE FOR AS AND RELATED DISORDERS THROUGH THE FUNDING OF AN AGRESSIVE RESEARCH AGENDA, EDUCATION, ADVOCACY, AND COMMUNITY SUPPORT. FAST IS COMMITTED TO ASSISTING INDIVIDUALS LIVING WITH AS TO REALIZE THEIR FULL POTENTIAL AND QUALITY OF LIFE. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $3,910,364 | ExpenseAmt |
| Grant | $3,910,364 | GrantAmt |
| Revenue | $4,011 | RevenueAmt |
| Desc | FAST'S PRIMARY GOAL IS TO ADVANCE RESEARCH LEADING TO A CURE FOR AS IN THE FORM OF PROVIDING GRANTS TO UNIVERSITIES TO PERFORM RESEARCH AND TESTING. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $912,827 | ExpenseAmt |
| Desc | AS IS A RARE DISORDER. THE COMMUNITY OF PARENTS AND CAREGIVERS OF INDIVIDUALS WITH AS RELY HEAVILY ON SOCIAL NETWORKING TO BECOME INFORMED AND SEEK ADVICE AND GUIDANCE ON THE CHALLENGES WHICH THE DISORDER PRESENTS. IT IS ONE OF FAST'S OBJECTIVES TO EDUCATE, SUPPORT, AND STRENGTHEN THIS COMMUNITY. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $314,409 | ExpenseAmt |
| Desc | THE SCIENCE SYMPOSIUM HAS THREE DAYS OF EVENTS:1) TRANSLATIONAL RESEARCH SYMPOSIUM AND ABOM MEETING. THIS EVENT IS FOR SCIENTISTS, INDUSTRY PARTNERS AND MEDICAL PROFESSIONALS ONLY TO DISCUSS THE LATEST RESEARCH ADVANCEMENTS AND FOCUS ON COLLABORATIVE EFFORTS TO ACCELERATE RESEARCH.2) GLOBAL SCIENCE SUMMIT: FOCUS ON ANGELMAN SYNDROME TRANSLATIONAL RESEARCH. THIS IS A PRESENTATION OF MULTIPLE RESEARCHERS IN THE AS SPACE TO THE ANGELMAN PARENT COMMUNITY. 3) GLOBAL SCIENCE SUMMIT: FOCUS ON CLINICAL TRIALS. THIS EVENT IS A PRESENTATION BY MULTIPLE PHARMACEUTICALS TO PARENTS ON THE CURRENT STAGE OF THEIR RESPECTIVE THERAPEUTICS AND NEXT STEPS FOR AS PARENTS. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $18,082 | ExpenseAmt |
| Desc | THE INTERNATIONAL ANGELMAN SYNDROME RESEARCH COUNCIL (INSYNC-AS) HELD ITS FIRST MEETING VIRTUALLY ON JULY 9, 2021. A JOINT PROJECT OF THE FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS (FAST) AND THE SIMONS FOUNDATION AUTISM RESEARCH INITIATIVE (SFARI), INSYNC-AS LAUNCHED WITH THE GOAL TO DRIVE ACCELERATION OF THE TRANSLATIONAL RESEARCH LANDSCAPE RELATED TO TREATMENTS FOR ANGELMAN SYNDROME (AS) AND OTHER NEURODEVELOPMENTAL DISORDERS (NDDS). THE MEETING AIMED TO BRING TOGETHER EXPERTS WITH PRECLINICAL, CLINICAL, REGULATORY AND INDUSTRY PERSPECTIVES TO DISCUSS NEW WAYS TO ACCELERATE THIS INITIATIVE INTO SUCCESSFUL THERAPIES. THESE EFFORTS WERE ALSO AIMING TO FORM A FOUNDATION TO SERVE AS A MODEL FOR OTHER RARE NDDS. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $18,082 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $5,155,682 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | 0 | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | 0 | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | Yes (1) | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | Yes (1) | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | Yes (1) | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | 0 | ForeignActivitiesInd |
| More Than5000 K To Org | 0 | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | Yes (1) | RelatedEntityInd |
| Related Organization Ctrl Ent | Yes (1) | RelatedOrganizationCtrlEntInd |
| Transaction With Control Ent | 0 | TransactionWithControlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 11 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Employee | 6 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | 0 | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 12 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 11 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | 0 | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | Yes (1) | InvestmentInJointVentureInd |
| Written Policy Or Procedure | Yes (1) | WrittenPolicyOrProcedureInd |
| States Where Copy Of Return Is Fld | MO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TX | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IA | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | KENA RICHERT | PersonNm |
| Phone | 8667830078 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1151 STONE MOUNTAIN DRIVE | AddressLine1Txt |
| City | MARBLE FALLS | CityNm |
| State Abbreviation | TX | StateAbbreviationCd |
| ZIP | 78654 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (15 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 | Former Ofcr Director TrusteeFormerOfcrDirectorTrusteeInd |
|---|---|---|---|---|---|---|---|---|
| JOHN SCHUELLTER | ||||||||
| CHAIRPERSON | 30.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| KELLY DAVID | ||||||||
| CO-VICE CHAIRPERSON | 30.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| KRISTY DIXON | ||||||||
| SECRETARY | 25.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| BEN O'CONNOR | ||||||||
| TREASURER | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| SAM MAYDEW | ||||||||
| DIRECTOR | 5.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| ALLYSON BERENT | ||||||||
| CHIEF SCIENCE OFFICER | 40.00 | 40.00 | Yes (X) | $0 | $325,000 | $0 | ||
| ROY AZOUT | ||||||||
| DIRECTOR | 5.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| RYAN JACOBS | ||||||||
| DIRECTOR | 15.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| NORA XU | ||||||||
| DIRECTOR | 5.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| AMELIA BEATTY | ||||||||
| DIRECTOR | 30.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| LAUREN HOFFER | ||||||||
| DIRECTOR | 18.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| KENA RICHERT | ||||||||
| CFO | 40.00 | 0.00 | Yes (X) | Yes (X) | $152,083 | $0 | $0 | |
| MEGAN CROSS | ||||||||
| DIRECTOR | 5.00 | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| MAIDDY DUNIGAN | ||||||||
| FORMER OFFICER AND COO | 40.00 | 0.00 | $152,083 | $0 | $0 | Yes (X) | ||
| PAULA EVANS | ||||||||
| FORMER OFFICER AND DIRECTO | 0.00 | 20.00 | $0 | $325,000 | $0 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $304,166 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $650,000 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $0 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 2 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | Yes (1) | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | Yes (1) | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (2 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| AKIRA PRODUCTION | |||||
| 2720 S HIGHLAND AVENUE 553 | LOMBARD | IL | 60148 | RELATED TO ANNUAL GALA PLANNING AND PROD | $414,685 |
| SAUL EWING ARSTEIN & LEHR LLP | |||||
| 1500 MARKET STREET FLOR 38 | PHILADELPHIA | PA | 19102 | LEGAL FEES FOR 2021 | $110,177 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 2 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $3,873,959 | FundraisingAmt |
| Government Grants | $55,104 | GovernmentGrantsAmt |
| All Other Contributions | $1,853,086 | AllOtherContributionsAmt |
| Noncash Contributions | $57,686 | NoncashContributionsAmt |
| Total Contributions | $5,782,149 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | LICENSING REVENUE | Desc |
| Business | 900099 | BusinessCd |
| Total Revenue Column | $4,011 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $4,011 | RelatedOrExemptFuncIncomeAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $4,011 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $115,898 | TotalRevenueColumnAmt |
| Exclusion | $115,898 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $22,899,854 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $23,196,808 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | -$296,954 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$296,954 | TotalRevenueColumnAmt |
| Exclusion | -$296,954 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $441,249 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $3,873,959 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $115,095 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $326,154 | TotalRevenueColumnAmt |
| Exclusion | $326,154 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | NET CHANGE IN VALUE OF INVESTMENT | Desc |
| Business | 541700 | BusinessCd |
| Total Revenue Column | -$1,953,771 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | -$1,953,771 | RelatedOrExemptFuncIncomeAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | -$1,953,771 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $3,977,487 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | -$1,949,760 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $145,098 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,910,364 | TotalAmt |
| Program Services | $3,910,364 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $304,166 | TotalAmt |
| Program Services | $190,104 | ProgramServicesAmt |
| Management And General | $114,062 | ManagementAndGeneralAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $300,539 | TotalAmt |
| Program Services | $83,084 | ProgramServicesAmt |
| Management And General | $155,917 | ManagementAndGeneralAmt |
| Fundraising | $61,538 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $36,958 | TotalAmt |
| Program Services | $19,965 | ProgramServicesAmt |
| Management And General | $12,280 | ManagementAndGeneralAmt |
| Fundraising | $4,713 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $169,858 | TotalAmt |
| Program Services | $99,239 | ProgramServicesAmt |
| Management And General | $70,619 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $16,952 | TotalAmt |
| Management And General | $16,952 | ManagementAndGeneralAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $53,211 | TotalAmt |
| Management And General | $53,211 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,438 | TotalAmt |
| Program Services | $5,438 | ProgramServicesAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $143,829 | TotalAmt |
| Program Services | $119,829 | ProgramServicesAmt |
| Fundraising | $24,000 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,557 | TotalAmt |
| Management And General | $5,557 | ManagementAndGeneralAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,770 | TotalAmt |
| Management And General | $262 | ManagementAndGeneralAmt |
| Fundraising | $1,508 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $14,584 | TotalAmt |
| Program Services | $14,584 | ProgramServicesAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,351 | TotalAmt |
| Management And General | $4,351 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| EDUCATION AND AWARENESS | $460,055 | $460,055 | ||
| COMMUNITY OUTREACH | $230,190 | $230,190 | ||
| COMPUTER AND SOFTWARE E | $75,478 | $19,307 | $56,171 | |
| OTHER FUNDRAISING EXPEN | $38,352 | $38,352 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $63,713 | TotalAmt |
| Program Services | $22,830 | ProgramServicesAmt |
| Management And General | $6,336 | ManagementAndGeneralAmt |
| Fundraising | $34,547 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,835,365 | TotalAmt |
| Program Services | $5,155,682 | ProgramServicesAmt |
| Management And General | $458,854 | ManagementAndGeneralAmt |
| Fundraising | $220,829 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,752,276 | BOYAmt |
| EOY | $1,369,488 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,837,392 | BOYAmt |
| EOY | $7,165,247 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $25,050 | BOYAmt |
| EOY | $1,665,000 | EOYAmt |
Receivables From Officers Etc ReceivablesFromOfficersEtcGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $43,753 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $14,584 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $29,169 | EOYAmt |
Investments Other Securities InvestmentsOtherSecuritiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,652,192 | BOYAmt |
| EOY | $6,380,671 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $71,621 | BOYAmt |
| EOY | $1,140,419 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $18,338,531 | BOYAmt |
| EOY | $17,749,994 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $29,675 | BOYAmt |
| EOY | $140,148 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,366,068 | BOYAmt |
| EOY | $3,193,674 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $24,180 | BOYAmt |
| EOY | $21,070 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,419,923 | BOYAmt |
| EOY | $3,354,892 | 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 | $15,872,918 | BOYAmt |
| EOY | $14,379,645 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $45,690 | BOYAmt |
| EOY | $15,457 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $15,918,608 | BOYAmt |
| EOY | $14,395,102 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $18,338,531 | BOYAmt |
| EOY | $17,749,994 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$1,857,878 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $334,372 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Consolidated Basis Fincl Stmt | Yes (X) | ConsolidatedBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | 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 | $8,864,752 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $5,322,214 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,793,869 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,364,172 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,669,359 | CurrentTaxYearAmt |
| Total | $27,014,366 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $8,864,752 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $5,322,214 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,793,869 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,364,172 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,669,359 | CurrentTaxYearAmt |
| Total | $27,014,366 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $10,592,221 | SubstantialContributorsTotAmt |
| Public Support Total170 | $16,422,145 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | -$18,970 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $74,011 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $135,979 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | -$428,601 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | -$181,056 | CurrentTaxYearAmt |
| Total | -$418,637 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus1 Year | $13,298 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $55,104 | CurrentTaxYearAmt |
| Total | $68,402 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $26,664,131 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $8,246 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.61590 | PublicSupportCY170Pct |
| Public Support PY170 | 0.61980 | 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
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $43,753 | OtherCostOrOtherBasisAmt |
| Depreciation | $14,584 | DepreciationAmt |
| Book Value | $29,169 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $29,169 | TotalBookValueLandBuildingsAmt |
Financial Derivatives FinancialDerivativesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Book Value | $169,500 | BookValueAmt |
| Method Valuation | F | MethodValuationCd |
Closely Held Equity Interests CloselyHeldEquityInterestsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Book Value | $6,211,171 | BookValueAmt |
| Method Valuation | F | MethodValuationCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Securities | $6,380,671 | TotalBookValueSecuritiesAmt |
Other Assets Org OtherAssetsOrgGrp (3 entries)
| DescDesc | Book ValueBookValueAmt |
|---|---|
| DIVIDENDS RECEIVABLE | $24,687 |
| INTEREST RECEIVABLE ON NOTE | $15,732 |
| CONVERTIBLE NOTE RECEIVABLE | $1,100,000 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Other Assets | $1,140,419 | TotalBookValueOtherAssetsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)
| DescDesc | AmtAmt |
|---|---|
| DERIVATIVE CONTRACTS SOLD SHORT AT FAIR MARKET VALUE | $8,000 |
| PAYROLL LIABILITIES | $13,070 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $21,070 | TotalLiabilityAmt |
| Total Rev Etc Audited Fincl Stmt | $4,373,743 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $334,372 | NetUnrealizedGainsInvstAmt |
| Other Revenue | $61,884 | OtherRevenueAmt |
| Revenue Not Reported | $396,256 | RevenueNotReportedAmt |
| Revenue Subtotal | $3,977,487 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $3,977,487 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $5,897,249 | TotExpnsEtcAuditedFinclStmtAmt |
| Other Expenses Included | $61,884 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $61,884 | ExpensesNotReportedAmt |
| Expenses Subtotal | $5,835,365 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $5,835,365 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | DIRECT EXPENSES FROM FUNDRAISING EVENTS (PAGE 9, PART VIII, LINE 8B) INVESTMENT ADVISORY FEES SHOWN NET OF DIVIDENDS AND INTEREST ON FINANCIALS |
| PART XII, LINE 2D - OTHER ADJUSTMENTS: | DIRECT EXPENSES FROM FUNDRAISING EVENTS (PAGE 9, PART VIII, LINE 8B) INVESTMENT ADVISORY FEES SHOWN NET OF DIVIDENDS AND INTEREST ON FINANCIALS |
| FORM 990, SCHEDULE D, PART XI, LINE 2D AND PART XII, LINE 2D | PART XI, LINE 2D - DIRECT EXPENSES FROM FUNDRAISING EVENTS INCLUDED ON PAGE 9, PART VIII, LINE 8B. PART XII, LINE 2D - DIRECT EXPENSES FROM FUNDRAISING EVENTS INCLUDED ON PAGE 9, PART VIII, LINE 8B. |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | ANNUAL GALA | Event1Nm |
| Gross Receipts Event1 | $4,315,208 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $3,873,959 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $441,249 | GrossRevenueEvent1Amt |
| Other Direct Expenses Event1 | $115,095 | OtherDirectExpensesEvent1Amt |
| Gross Receipts Total | $4,315,208 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $3,873,959 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $441,249 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $115,095 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $115,095 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $326,154 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (7 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|---|
| DUKE UNIVERSITY CENTER FOR HEALTH MANAGEMENT | ||||||||
| 215 MORRIS STREET | DURHAM | NC | 27701 | 560532129 | 115(1) | $77,875 | $0 | OUTCOME MEASURE STUDY |
| UNIVERSITY OF CALIFORNIA DAVIS | ||||||||
| ONE SHIELDS AVENUE | DAVIS | CA | 95616 | 946036494 | 115(1) | $1,093,891 | $0 | TRANSLATIONAL ANALYSIS OF GAIT AS A PRIMARY OUTCOME MEASURE IN ANGELMAN SYNDROME AND IND ENABLING STUDIES. |
| YALE UNIVERSITY | ||||||||
| PO BOX 2038 | NEW HAVEN | CT | 06521 | 060646973 | 115(1) | $579,804 | $0 | GENERATION AND CHARACTERIZATION OF A NEW AS MOUSE MODEL THAT RECAPITULATES THE LARGE DELETION OF HUMAN 15Q11-Q13 AND A CONTROL LINE THAT CARRIES A DELETION OF ALL GENES IN 15Q11-Q13 BUT UBE3A |
| NORTH CAROLINA STATE UNIVERSITY | ||||||||
| 1450 FAIRCHILD RD | WINSTON SALEM | NC | 27105 | 270080644 | 115(1) | $149,661 | $0 | A HUMAN PLATFORM TO EFFICIENTLY STUDY CLASS 1 DELETED GENES |
| UNIVERSITY OF PENNSYLVANIA | ||||||||
| PO BOX 785541 | PHILADELPHIA | PA | 19178 | 231352685 | 115(1) | $458,872 | $0 | A. THE UBE3A ANTISENSE TRANSCRIPT (UBE3A-AS) IS A LONG NON-CODING MRNA THAT SILENCES EXPRESSION OF THE PATERNAL UBE3A GENE IN NEURONS. INTERRUPTION OF THIS IMPRINTING PHENOMENON CAN BE DONE THROUGH ASOS, CRISPR-GRNA OR OTHER TECHNOLOGIES LIKE MICRORNA (MIRNA). THIS PROJECT IS AIMING TO DEVELOP A STRATEGY TO SUPPRESS THE UBE3A-AS IN THE MOUSE MODEL OF AS USING MIRNAS. ADVANTAGES TO MIRNA ARE THAT THEY ARE SUBJECT TO ENDOGENOUS CELLULAR PROCESSING AND REGULATION, WHICH CAN HELP CIRCUMVENT ISSUES RELATED TO OVEREXPRESSION OF EXOGENOUS GENETIC MATERIAL (WITH UBE3A REPLACEMENT), AND THE NEED FOR REPEATED REDOSING (WITH ASOS). MIRNA IS THOUGHT TO BE ADVANTAGEOUS OVER SHRNA DUE TO ENDOGENOUS CELLULAR PROCESSING AND REGULATION COMPARED TO OVEREXPRESSION YOU COULD GET WITH SHRNA. |
| UNIVERSITY OF COLORADO DENVER | ||||||||
| 13001 E 17TH PLACE ROOM W114 | AURORA | CO | 80045 | 846000055 | 115(1) | $383,163 | $0 | THE AIM OF THIS PROJECT IS TO CREATE CARE PROTOCOLS FOR THE EMERGENCY AND URGENT MANAGEMENT OF INDIVIDUALS WITH AS AND UTILIZE PROSPECTIVE AVAILABILITY OF AN AS-EXPERT PROVIDER TO UNDERSTAND THE UTILITY OF THE PROTOCOLS. TO TEST THESE PROTOCOLS AND PERFORM QUALITY IMPROVEMENT IN THE MANAGEMENT OF AS, AN EMERGENCY LINE AVAILABLE 24 HOURS A DAY AND 7 DAYS PER WEEK WILL BE AVAILABLE TO FAMILIES TO CALL TO REACH AN AS-SPECIALIST FOR PROVIDER-TO- PROVIDER CONTACT. |
| NORTH CAROLINA STATE UNIVERSITY | ||||||||
| 2601 WOLF VILLAGE WAY SUITE 240 | RALEIGH | NC | 27695 | 566000756 | 115(1) | $173,139 | $0 | THE OBJECTIVE OF THIS WORK IS TO ADDRESS THIS CHALLENGE DIRECTLY THROUGH THE GENERATION OF TWO TYPES OF HUMAN STEM CELL LINES THAT CONTAIN EITHER 'UNIVERSAL LANDING PADS' THAT CAN BE USED BY THE ANGELMAN RESEARCH COMMUNITY OR EPIGENONE EDITORS THAT WILL CONVERT A WILD TYPE MATERNAL PWS-AS LOCUS INTO ONE THAT RESEMBLES PATERNAL IMPRINTING PATTERNS SIMILAR TO THAT IN ICD AND UPD FORMS OF ANGELMAN SYNDROME. THESE ENGINEERED CELL LINES WILL ENABLE RESEARCHERS TO EFFICIENTLY INTRODUCE DIVERSE NUMBERS AND COMBINATIONS OF GENES AT TUNABLE EXPRESSION LEVELS, WITHOUT HAVING TO USE INEFFICIENT GENOME EDITING TECHNOLOGIES FOR EACH NEW GENE THEY WANT TO STUDY. IN PARTICULAR, THIS WORK WILL AIM TO PROVIDE HUMAN STEM CELL LINES THAT CAN BE RAPIDLY USED BY MOST OTHER INVESTIGATORS WITH BASIC CELL CULTURE EQUIPMENT TO GENERATE MODELS OF IMPRINTING CENTER DEFECTS AND UNIPARENTAL DISOMY. |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | THE FOUNDATION REQUIRES SEMI-ANNUAL REPORTS FROM THE RECIPIENT OF THE FUNDS WHICH MUST INCLUDE A PROGRESS STATUS AND AN ACCOUNTING OF THE FUNDS. IN ADDITION, THE FOUNDATION RESERVES THE RIGHT TO MAKE PERIODIC SIGHT VISITS AS DEEEMED NECESSARY. THE FOUNDATION MAY ALSO OBTAIN MORE INFREQUENT INFORMAL UPDATES VIA TELEPHONE OR E-MAIL. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Independent Consultant | Yes (X) | IndependentConsultantInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (4 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| ALLYSON BERENT | ||||||||||||||
| CHIEF SCIENCE OFFICER | $0 | $250,000 | $0 | $75,000 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $325,000 | $0 | $0 |
| PAULA EVANS | ||||||||||||||
| FORMER OFFICER AND DIRECTO | $0 | $250,000 | $0 | $75,000 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $325,000 | $0 | $0 |
| KENA RICHERT | ||||||||||||||
| CFO | $152,083 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $152,083 | $0 | $0 | $0 |
| MAIDDY DUNIGAN | ||||||||||||||
| FORMER OFFICER AND COO | $152,083 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $152,083 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 3 | FormAndLineReferenceDesc |
| Explanation | THE BOARD OBTAINED A WRITTEN COMPENSATION ANALYSIS FROM WILLIS TOWERS WATSON, WHO SPECIALIZES IN EXECUTIVE COMPENSATION ASSESSMENTS. THE BOARD REVIEWED THIS COMPENSATION ANALYSIS, THE JOB DESCRIPTION, AND THE CURRENT NEEDS OF THE FOUNDATION TO SET THE COMPENSATION LEVELS FOR THE COO AND CFO POSITION. | ExplanationTxt |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 3 | ContributionCnt |
| Noncash Contributions Rpt F990 | $57,686 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FAIR MARKET VALUE | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | 0 | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (5 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 8B | THE FOUNDATION DOES NOT CURRENTLY HAVE ANY COMMITTEES WITH THE AUTHORITY TO ACT ON BEHALF OF THE GOVERNING BODY. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE BOOKS AND RECORDS ARE MAINTAINED BY FAST'S TREASURER AND REVIEWED BY THE CFO AND THE VICE CHAIRPERSON. FAST'S TREASURER GIVES FAST'S BOOKS AND RECORDS TO AN OUTSIDE CPA FIRM TO PREPARE FAST'S FORM 990. ONCE COMPLETED THE FORM 990 IS PROVIDED TO THE TREASURER, CFO AND VICE CHAIRPERSON FOR REVIEW. THE TREASURER, CFO AND VICE CHAIRPERSON REVIEW THE RETURN IN GREAT DETAIL, ASKING CLARIFYING QUESTIONS AND SUGGESTING CHANGES. ONCE THE RECOMMENDED CHANGES HAVE BEEN INCORPORATED INTO THE RETURN, THE FORM 990 IS DISTRIBUTED TO ALL BOARD MEMBERS FOR QUESTIONS, COMMENTS, AND RECOMMENDED CHANGES. ONCE THE BOARD MEMBERS QUESTIONS HAVE BEEN ANSWERED AND ANY CHANGES INCORPORATED INTO THE RETURN, THE FORM 990 IS FILED. |
| FORM 990, PART VI, SECTION B, LINE 12C | BOARD MEMBERS ARE REQUIRED TO CERTIFY ON AN ANNUAL BASIS ANY INTEREST THAT COULD GIVE RISE TO A CONFLICT. IF A CONFLICT APPEARS TO HAVE ARISEN, FAST BOARD OF DIRECTORS MEET TO DISCUSS THE POTENTIAL CONFLICT OF INTEREST AND CONSULT LEGAL COUNSEL AND OTHER APPLICABLE THIRD-PARTY EXPERTS AS DEEMED NECESSARY. |
| FORM 990, PART VI, SECTION B, LINE 15 | THE BOARD OBTAINED A WRITTEN COMPENSATION ANALYSIS FROM WILLIS TOWERS WATSON, WHO SPECIALIZES IN EXECUTIVE COMPENSATION ASSESSMENTS. THE BOARD REVIEWED THIS COMPENSATION ANALYSIS, THE JOB DESCRIPTION, AND THE CURRENT NEEDS OF THE FOUNDATION TO SET THE COMPENSATION LEVELS FOR THE COO AND CFO POSITION. ALL BOARD OF DIRECTORS, OFFICERS, AND SCIENTIFIC ADVISORY BOARD MEMBERS ARE NON-COMPENSATED VOLUNTEERS. |
| FORM 990, PART VI, SECTION C, LINE 19 | GOVERNING DOCUMENTS, THE CONFLICT OF INTEREST POLICY, AND THE FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST AS WELL AS ON THE FOUNDATION'S WEBSITE. |
Schedule R IRS990ScheduleR
Id Related Org Txbl Partnership IdRelatedOrgTxblPartnershipGrp (2 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | EINEIN | Primary ActivitiesPrimaryActivitiesTxt | Legal Domicile StateLegalDomicileStateCd | Predominant Income TypePredominantIncomeTypeTxt | Share Of EOY AssetsShareOfEOYAssetsAmt | Disproportionate AllocationsDisproportionateAllocationsInd | General Or Managing PartnerGeneralOrManagingPartnerInd | OwnershipOwnershipPct |
|---|---|---|---|---|---|---|---|---|---|---|---|
| GENETX BIOTHERAPEUTICS LLC | |||||||||||
| 5020 CLARK ROAD 240 | SARASOTA | FL | 34233 | 823674904 | MEDICAL RESEARCH | DE | RELATED | $27,573,585 | 0 | Yes (1) | 0.58960 |
| TRANFORMATX BIOTHERAPEUTICS LLC | |||||||||||
| 57 SHADE STREET | LEXINGTON | MA | 02421 | 263160079 | MEDICAL RESEARCH | DE | RELATED | $4,048,645 | 0 | Yes (1) | 0.92630 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Receipt Of Int Annts Rnts Rylts | 0 | ReceiptOfIntAnntsRntsRyltsInd |
| Gift Grnt Or Cap Contri To Oth Org | 0 | GiftGrntOrCapContriToOthOrgInd |
| Gift Grnt Cap Contri From Oth Org | 0 | GiftGrntCapContriFromOthOrgInd |
| Loans Or Guarantees To Other Org | 0 | LoansOrGuaranteesToOtherOrgInd |
| Loans Or Guarantees From Oth Org | 0 | LoansOrGuaranteesFromOthOrgInd |
| Div Related Organization | 0 | DivRelatedOrganizationInd |
| Asset Sale To Other Org | 0 | AssetSaleToOtherOrgInd |
| Asset Purchase From Other Org | 0 | AssetPurchaseFromOtherOrgInd |
| Asset Exchange | 0 | AssetExchangeInd |
| Rental Of Facilities To Oth Org | 0 | RentalOfFacilitiesToOthOrgInd |
| Rental Of Fclts From Oth Org | 0 | RentalOfFcltsFromOthOrgInd |
| Perform Of Services For Oth Org | 0 | PerformOfServicesForOthOrgInd |
| Perform Of Services By Other Org | 0 | PerformOfServicesByOtherOrgInd |
| Sharing Of Facilities | 0 | SharingOfFacilitiesInd |
| Paid Employees Sharing | 0 | PaidEmployeesSharingInd |
| Reimbursement Paid To Other Org | 0 | ReimbursementPaidToOtherOrgInd |
| Reimbursement Paid By Other Org | 0 | ReimbursementPaidByOtherOrgInd |
| Transfer To Other Org | 0 | TransferToOtherOrgInd |
| Transfer From Other Org | 0 | TransferFromOtherOrgInd |