INTERNATIONAL RETT SYNDROME FOUNDATION: Form 990, tax year 2024
View the entire original 990 at ProPublica ↗
- Organization
- INTERNATIONAL RETT SYNDROME FOUNDATION (EIN 31-1682518)
- Tax period
- 2024-01-01 to 2024-12-31
- Filed
- 2025-07-31
- IRS object ID
- 202542129349301564
- Schema version
- 2024v5.2
- 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 F
- Schedule G
- Schedule I
- Schedule J
- Schedule M
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2025-07-31T14:00:11-05:00 | ReturnTs |
| Tax Period End | 2024-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 311119890 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Barnes Dennig & Co LTD | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 150 East Fourth Street | AddressLine1Txt |
| City | Cincinnati | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 45202 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2024-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 311682518 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | International Rett Syndrome Foundation | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | INTE | BusinessNameControlTxt |
| Phone | 5138743020 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 4500 Cooper Road Suite 204 | AddressLine1Txt |
| City | Cincinnati | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 45242 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Laura Hameed | PersonNm |
| Person Title | Executive Director | PersonTitleTxt |
| Phone | 5138743020 | PhoneNum |
| Signature | 2025-07-30 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IRS Responsible Prty Info Curr | Yes (1) | IRSResponsiblePrtyInfoCurrInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | Paula Hume | PreparerPersonNm |
| PTIN | P00537516 | PTIN |
| Phone | 5132418313 | PhoneNum |
| Preparation | 2025-07-30 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2024 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | BuildTS |
Form 990 IRS990
Doing Business As Name DoingBusinessAsName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Rettsyndromeorg | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | Melissa Kennedy | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 4500 Cooper Road Suite 204 | AddressLine1Txt |
| City | Cincinnati | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 45242 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $8,730,876 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | www.rettsyndrome.org | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1999 | FormationYr |
| Legal Domicile State | OH | LegalDomicileStateCd |
| Activity Or Mission | To fund reseach aimed at potential cures for Rett syndrome and to empower families through education. | ActivityOrMissionDesc |
| Voting Members Governing Body | 11 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 11 | VotingMembersIndependentCnt |
| Total Employee | 16 | TotalEmployeeCnt |
| Total Volunteers | 200 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $3,586,302 | PYContributionsGrantsAmt |
| CY Contributions Grants | $3,808,219 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $161,492 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $334,015 | CYProgramServiceRevenueAmt |
| PY Investment Income | $88,797 | PYInvestmentIncomeAmt |
| CY Investment Income | $261,285 | CYInvestmentIncomeAmt |
| PY Other Revenue | $1,019,229 | PYOtherRevenueAmt |
| CY Other Revenue | $410,229 | CYOtherRevenueAmt |
| PY Total Revenue | $4,855,820 | PYTotalRevenueAmt |
| CY Total Revenue | $4,813,748 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $856,917 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $1,856,999 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $1,223,958 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $1,288,538 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $428,352 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $1,642,897 | PYOtherExpensesAmt |
| CY Other Expenses | $2,385,485 | CYOtherExpensesAmt |
| PY Total Expenses | $3,723,772 | PYTotalExpensesAmt |
| CY Total Expenses | $5,531,022 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $1,132,048 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$717,274 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $6,263,405 | TotalAssetsBOYAmt |
| Total Assets EOY | $5,325,567 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $379,215 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $338,142 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $5,884,190 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $4,987,425 | NetAssetsOrFundBalancesEOYAmt |
| Mission | To accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $3,676,545 | ExpenseAmt |
| Grant | $1,856,999 | GrantAmt |
| Revenue | $200,291 | RevenueAmt |
| Desc | Our commitment to finding treatments and a cure for Rett syndrome compels us to advance cutting edge research. Through our research programs we fund basic, translational grants throughout the world. We fund post-doctoral researchers, host science symposia to allow for discussions and networking of the world's Rett experts. We fund compound development directly through financial support of high throughput screening systems as well as financially supporting clinical trials. We actively support a clinical research network that develops care guidelines and contributes to a data registry that builds upon the NHS funded Natural History Study, and aims to continue to deepen our understanding of Rett syndrome and support drug development. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $1,084,461 | ExpenseAmt |
| Revenue | $133,724 | RevenueAmt |
| Desc | We empower families through our robust educational programming, consisting of free monthly webinars covering health care topics of interest to families, as well as 4 in-person regional education days. We provide 24/7/365 access to 2 staff members who are devoted to family engagement. We provide educational materials for families, caregivers, schools and therapists. We advocate to federal officials, keeping Rett syndrome on the list of funding priorities. We work with industry in the design of clinical trials, ensuring the clinical trial environment is family centered. We support a network of clinics in North America that is building guidelines for clinical care, making those guidelines available to families as they work with their child's care team, ensuring they are receiving appropriate care. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $4,761,006 | 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 | Yes (1) | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | 0 | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | 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 | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 16 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 16 | 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 | 11 | 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 | Yes (1) | 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 | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AZ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | DE | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | HI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ID | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | LA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ME | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | 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 | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NE | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ND | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TX | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WY | StatesWhereCopyOfReturnIsFldCd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Brittney Gibson | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 5138743020 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 4500 Cooper Road Suite 204 | AddressLine1Txt |
| City | Cincinnati | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 45242 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (17 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | OfficerOfficerInd | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|
| Jospeh Horrigan MD | |||||||
| Trustee | 0.50 | Yes (X) | $0 | $0 | $0 | ||
| Lisa Monteggia PhD | |||||||
| Trustee | 0.50 | Yes (X) | $0 | $0 | $0 | ||
| David Pass PharmD | |||||||
| Chairman | 1.00 | Yes (X) | $0 | $0 | $0 | Yes (X) | |
| Mitch Bleske | |||||||
| Treasurer | 1.00 | Yes (X) | $0 | $0 | $0 | Yes (X) | |
| Gordon Rich | |||||||
| Founding Seat - Non Voting | 0.50 | Yes (X) | $0 | $0 | $0 | Yes (X) | |
| Alan Shukovsky | |||||||
| Trustee | 0.50 | Yes (X) | $0 | $0 | $0 | ||
| Leslie Mehta Esq | |||||||
| Interim Chief Executive Officer | 0.50 | Yes (X) | $5,208 | $0 | $0 | Yes (X) | |
| Mary Forrest Engel | |||||||
| Trustee | 0.50 | Yes (X) | $0 | $0 | $0 | ||
| Steve Wood | |||||||
| Vice Chairman | 0.50 | Yes (X) | $0 | $0 | $0 | Yes (X) | |
| Laura Stoppel PhD | |||||||
| Trustee | 0.50 | Yes (X) | $0 | $0 | $0 | ||
| Parthy Evans | |||||||
| Trustee - Start 07/24 | 0.50 | Yes (X) | $0 | $0 | $0 | ||
| Steve Marconi CPA | |||||||
| Trustee - Start 07/24 | 0.50 | Yes (X) | $0 | $0 | $0 | ||
| Melissa Kennedy - Exit 1224 | |||||||
| Chief Executive Officer | 40.00 | $186,940 | $0 | $2,279 | Yes (X) | ||
| Nupur Garg | |||||||
| VP of Research | 40.00 | $187,300 | $0 | $7,384 | Yes (X) | ||
| Timothy Frank | |||||||
| Development Director | 40.00 | $116,466 | $0 | $2,264 | Yes (X) | ||
| Meghan Cordeiro | |||||||
| Marketing & Communication Director | 40.00 | $113,308 | $0 | $6,234 | Yes (X) | ||
| Drew Jones | |||||||
| VP of Clinical Development | 40.00 | $108,976 | $0 | $839 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $718,198 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $19,000 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 5 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $1,198,216 | FundraisingAmt |
| All Other Contributions | $2,610,003 | AllOtherContributionsAmt |
| Noncash Contributions | $131,317 | NoncashContributionsAmt |
| Total Contributions | $3,808,219 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| Conference Income | 611710 | $200,291 | $200,291 |
| Service Revenue | 900099 | $133,724 | $133,724 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $334,015 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $118,142 | TotalRevenueColumnAmt |
| Exclusion | $118,142 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $3,779,144 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $3,636,001 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $143,143 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $143,143 | TotalRevenueColumnAmt |
| Exclusion | $143,143 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $691,356 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $1,198,216 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $281,127 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $410,229 | TotalRevenueColumnAmt |
| Exclusion | $410,229 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $4,813,748 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $334,015 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $671,514 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,678,482 | TotalAmt |
| Program Services | $1,678,482 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $178,517 | TotalAmt |
| Program Services | $178,517 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $194,427 | TotalAmt |
| Program Services | $136,099 | ProgramServicesAmt |
| Management And General | $29,164 | ManagementAndGeneralAmt |
| Fundraising | $29,164 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $966,531 | TotalAmt |
| Program Services | $724,341 | ProgramServicesAmt |
| Management And General | $121,077 | ManagementAndGeneralAmt |
| Fundraising | $121,113 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $20,980 | TotalAmt |
| Program Services | $15,551 | ProgramServicesAmt |
| Management And General | $5,429 | ManagementAndGeneralAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $15,610 | TotalAmt |
| Program Services | $11,665 | ProgramServicesAmt |
| Management And General | $2,013 | ManagementAndGeneralAmt |
| Fundraising | $1,932 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $90,990 | TotalAmt |
| Program Services | $67,444 | ProgramServicesAmt |
| Management And General | $11,981 | ManagementAndGeneralAmt |
| Fundraising | $11,565 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,589 | TotalAmt |
| Management And General | $2,589 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $86,530 | TotalAmt |
| Management And General | $86,530 | ManagementAndGeneralAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $28,619 | TotalAmt |
| Management And General | $28,619 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $92,838 | TotalAmt |
| Program Services | $82,572 | ProgramServicesAmt |
| Fundraising | $10,266 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $33,930 | TotalAmt |
| Program Services | $25,557 | ProgramServicesAmt |
| Management And General | $4,117 | ManagementAndGeneralAmt |
| Fundraising | $4,256 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $291,816 | TotalAmt |
| Program Services | $198,410 | ProgramServicesAmt |
| Management And General | $10,695 | ManagementAndGeneralAmt |
| Fundraising | $82,711 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $29,485 | TotalAmt |
| Program Services | $22,739 | ProgramServicesAmt |
| Management And General | $3,202 | ManagementAndGeneralAmt |
| Fundraising | $3,544 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $776,379 | TotalAmt |
| Program Services | $690,145 | ProgramServicesAmt |
| Management And General | $16,127 | ManagementAndGeneralAmt |
| Fundraising | $70,107 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $20,437 | TotalAmt |
| Program Services | $15,566 | ProgramServicesAmt |
| Management And General | $2,502 | ManagementAndGeneralAmt |
| Fundraising | $2,369 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| Direct Program Costs | $845,928 | $836,192 | $4,656 | $5,080 |
| Bank and other fees | $92,181 | $6,965 | $3,964 | $81,252 |
| Human Resources and Oth | $70,720 | $59,513 | $8,500 | $2,707 |
| Miscellaneous | $14,033 | $11,248 | $499 | $2,286 |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,531,022 | TotalAmt |
| Program Services | $4,761,006 | ProgramServicesAmt |
| Management And General | $341,664 | ManagementAndGeneralAmt |
| Fundraising | $428,352 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,205,423 | BOYAmt |
| EOY | $2,178,126 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $169,301 | BOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $50,000 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $55,175 | BOYAmt |
| EOY | $97,701 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,762,763 | BOYAmt |
| EOY | $2,941,277 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $70,743 | BOYAmt |
| EOY | $58,463 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,263,405 | BOYAmt |
| EOY | $5,325,567 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $204,945 | BOYAmt |
| EOY | $251,044 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $124,681 | BOYAmt |
| EOY | $50,000 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $49,589 | BOYAmt |
| EOY | $37,098 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $379,215 | BOYAmt |
| EOY | $338,142 | 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 | $4,582,266 | BOYAmt |
| EOY | $3,780,033 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,301,924 | BOYAmt |
| EOY | $1,207,392 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,884,190 | BOYAmt |
| EOY | $4,987,425 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,263,405 | BOYAmt |
| EOY | $5,325,567 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | -$717,274 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | -$180,212 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $721 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| 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) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| 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 | $3,832,035 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $4,006,260 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,581,751 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,586,302 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $3,808,219 | CurrentTaxYearAmt |
| Total | $18,814,567 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $3,832,035 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $4,006,260 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,581,751 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,586,302 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $3,808,219 | CurrentTaxYearAmt |
| Total | $18,814,567 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $465,362 | SubstantialContributorsTotAmt |
| Public Support Total170 | $18,349,205 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $78,707 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $100,997 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $74,911 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $125,135 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $118,142 | CurrentTaxYearAmt |
| Total | $497,892 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus3 Years | $19,643 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $8,422 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $355 | CurrentTaxYearMinus1YearAmt |
| Total | $28,420 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $19,340,879 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $805,909 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.94870 | PublicSupportCY170Pct |
| Public Support PY170 | 0.94400 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Form990 Schedule A Part VI Form990ScheduleAPartVIGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Schedule A, Part II, Line 10, Explanation of Other Income: | FormAndLineReferenceDesc |
| Explanation | Other Income - 2021 Amount: $ 19,643. 2022 Amount: $ 8,422. 2023 Amount: $ 355. | ExplanationTxt |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,103,954 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $142,027 | InvestmentEarningsOrLossesAmt |
| Administrative Expenses | $62,380 | AdministrativeExpensesAmt |
| End Year Balance | $1,183,601 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,030,621 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $128,447 | InvestmentEarningsOrLossesAmt |
| Administrative Expenses | $55,114 | AdministrativeExpensesAmt |
| End Year Balance | $1,103,954 | EndYearBalanceAmt |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,366,359 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | -$223,748 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $111,990 | OtherExpendituresAmt |
| End Year Balance | $1,030,621 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,279,391 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $168,526 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $70,000 | OtherExpendituresAmt |
| Administrative Expenses | $11,558 | AdministrativeExpensesAmt |
| End Year Balance | $1,366,359 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,203,115 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $135,634 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $59,358 | OtherExpendituresAmt |
| End Year Balance | $1,279,391 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Prmnnt Endowment Balance EOY | 1.00000 | PrmnntEndowmentBalanceEOYPct |
| Endowments Held Unrelated Org | Yes (1) | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | 0 | EndowmentsHeldRelatedOrgInd |
| Total Book Value Land Buildings | $0 | TotalBookValueLandBuildingsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | Right to Use Liability | Desc |
| Amt | $37,098 | Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $37,098 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $4,898,730 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | -$180,212 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $11,965 | DonatedServicesAndUseFcltsAmt |
| Other Revenue | $281,848 | OtherRevenueAmt |
| Revenue Not Reported | $113,601 | RevenueNotReportedAmt |
| Revenue Subtotal | $4,785,129 | RevenueSubtotalAmt |
| Investment Expenses Not Incld | $28,619 | InvestmentExpensesNotIncldAmt |
| Revenue Not Reported Fincl Stmt | $28,619 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $4,813,748 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $5,795,495 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $11,965 | DonatedServicesUseFcltsAmt |
| Other Expenses Included | $281,127 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $293,092 | ExpensesNotReportedAmt |
| Expenses Subtotal | $5,502,403 | ExpensesSubtotalAmt |
| Investment Expenses Not Incld2 | $28,619 | InvestmentExpensesNotIncld2Amt |
| Expenses Not Rpt Fincl Stmt | $28,619 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $5,531,022 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (4 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Part V, Line 4: | Money earned from the endowment funds will be used to fund our program service of Research or Family Empowerment. |
| Part X, Line 2: | IRSF is exempt from income taxes under Section 501 of the Internal Revenue Code and a similar provision of Ohio law. However, the IRSF is subject to federal income tax on any unrelated business taxable income. IRSF's IRS Form 990 is subject to review and examination by federal and state authorities. IRSF believes it has appropriate support for any tax positions taken, and therefore, does not have any uncertain income tax positions that are material to the financial statements. |
| Part XI, Line 2d - Other Adjustments: | Special Event Expense 281,127. Change in Beneficial Interest in Trust 721. |
| Part XII, Line 2d - Other Adjustments: | Special Event Expense 281,127. |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|---|
| Europe (Including Iceland & Greenland) | 0 | 0 | Grants to recipients in the region | Research Grant | $160,837 |
| Middle East and North Africa | 0 | 0 | Grants to recipents in the region | Research Grant | |
| East Asia and the Pacific | 0 | 0 | Grants to recipents in the region | Research Grant | $17,680 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $178,517 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $178,517 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt | Non Cash AssistanceNonCashAssistanceAmt |
|---|---|---|---|---|
| Europe (Including Iceland & Greenland) | Other | $160,837 | Electronic Fund/Wire Transfer | $0 |
| East Asia and the Pacific | Other | $17,680 | Electronic Fund/Wire Transfer | $0 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 3 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part I, Line 2: | FormAndLineReferenceDesc |
| Explanation | Our Grant award process includes a letter of intent (LOI) submitted to the Foundation. LOIs are reviewed to determine whether the described project fits the intended research program and grant mechanism. Applicants with eligible LOIs are asked to submit a full grant application and a peer-review meeting of scientific reviewers is convened to determine which projects have the highest scientific merit. Research grants are recommended to the foundation's Board of Directors who vote to approve. Researchers are then required to sign an acceptance agreement with the foundation and are required to submit two reports a year on progress. The Chief Science Officer and Manager of Grants & Research review the reports and corresponds with the researcher to ensure proper use of funds. The Foundation makes quarterly payments to all researchers, unless there is a special exception. | ExplanationTxt |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | Raise a Glass Houston | Event1Nm |
| Gross Receipts Event1 | $157,142 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $139,239 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $17,903 | GrossRevenueEvent1Amt |
| Rent Facility Costs Event1 | $14,938 | RentFacilityCostsEvent1Amt |
| Food And Beverage Event1 | $22,976 | FoodAndBeverageEvent1Amt |
| Other Direct Expenses Event1 | $14,775 | OtherDirectExpensesEvent1Amt |
| Event2 | Ohio Magato Stroll | Event2Nm |
| Gross Receipts Event2 | $148,168 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $148,168 | CharitableContriEvent2Amt |
| Non Cash Prizes Event2 | $141 | NonCashPrizesEvent2Amt |
| Rent Facility Costs Event2 | $5,489 | RentFacilityCostsEvent2Amt |
| Food And Beverage Event2 | $519 | FoodAndBeverageEvent2Amt |
| Entertainment Event2 | $261 | EntertainmentEvent2Amt |
| Other Direct Expenses Event2 | $12,526 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 33 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $1,584,262 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $910,809 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $673,453 | GrossRevenueOtherEventsAmt |
| Non Cash Prizes Other Events | $15,851 | NonCashPrizesOtherEventsAmt |
| Rent Fclty Costs Other Events | $65,230 | RentFcltyCostsOtherEventsAmt |
| Food And Beverage Other Events | $23,557 | FoodAndBeverageOtherEventsAmt |
| Entertainment Other Events | $6,687 | EntertainmentOtherEventsAmt |
| Oth Direct Expnss Other Events | $98,177 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $1,889,572 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $1,198,216 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $691,356 | GrossRevenueTotalEventsAmt |
| Non Cash Prizes Total Events | $15,992 | NonCashPrizesTotalEventsAmt |
| Rent Fclty Costs Total Events | $85,657 | RentFcltyCostsTotalEventsAmt |
| Food And Beverage Total Events | $47,052 | FoodAndBeverageTotalEventsAmt |
| Entertainment Total Events | $6,948 | EntertainmentTotalEventsAmt |
| Oth Direct Expnss Total Events | $125,478 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $281,127 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $410,229 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (12 entries)
| Address Line1USAddress/AddressLine1Txt | Address Line2USAddress/AddressLine2Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|---|
| North Carolina State University | ||||||||
| 2601 Wolf Village Way Suite 240 CB | 7514 | Raleigh | NC | 27606 | 566000756 | $120,982 | $0 | Rett Syndrome Research |
| The General Hospital Corporation dba Massachusetts General Hospital | ||||||||
| 399 Revolution Drive Suite 740 | Somerville | MA | 02145 | 042697983 | $300,000 | $0 | Rett Syndrome Research | |
| Vanderbilt University | ||||||||
| 110 21st Avenue South | Nashville | TN | 37203 | 620476822 | $137,500 | $0 | Rett Syndrome Research | |
| The Regents of the University of Colorado | ||||||||
| 1800 Grant Street Suite 600 | Denver | CO | 80203 | 846000555 | $137,500 | $0 | Rett Syndrome Research | |
| Regents of the University of California | ||||||||
| 1850 Research Park Drive Suite 300 | Davis | CA | 95618 | 943067788 | $50,000 | $0 | Rett Syndrome Research | |
| The Rockefeller University | ||||||||
| 1230 York Avenue | New York | NY | 10065 | 131624158 | $120,000 | $0 | Rett Syndrome Research | |
| Whitehead University | ||||||||
| 455 Main Street | Cambridge | MA | 02142 | 061043412 | $50,000 | $0 | Rett Syndrome Research | |
| The University of North Carolina at Chapel Hill | ||||||||
| 104 Airport Drive Ste 2200 Box 1350 | Chapel Hill | NC | 27599 | 566001393 | $100,000 | $0 | Rett Syndrome Research | |
| The University of Texas Southwestern Medical Center | ||||||||
| 5323 Harry Hines Blvd MC9029 | Dallas | TX | 75390 | 756002868 | $137,500 | $0 | Rett Syndrome Research | |
| University of Colorado Denver | ||||||||
| Grants Contracts 213631 TB PO Box | 910238 | Denver | CO | 80291 | 846000555 | $125,000 | $0 | Rett Syndrome Research |
| University of Virginia Rector & Visitors | ||||||||
| 101 North Emmet Street | Charlottesville | VA | 22903 | 546001796 | $100,000 | $0 | Rett Syndrome Research | |
| University of Wisconsin-Madison | ||||||||
| Research Sponsored Programs 21 | North Park Street Suite 6301 | Madison | WI | 53715 | 396006492 | $300,000 | $0 | Rett Syndrome Research |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 12 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part I, Line 2: | FormAndLineReferenceDesc |
| Explanation | Our Grant award process includes a letter of intent (LOI) submitted to the Foundation. LOIs are reviewed to determine whether the described project fits the intended research program and grant mechanisms. Applicants with eligible LOIs are asked to submit a full grant application and a peer-review meeting of scientific reviewers is convened to determine which projects have the highest scientific merit. Research grants are recommended to the foundation's Board of Directors who vote to approve. Researchers are then required to sign an acceptance agreement with the foundation and are required to submit two reports a year on progress. The Chief Science Officer and Manager of Grants & Research review the reports and corresponds with the researcher to ensure proper use of funds. The Foundation makes quarterly payments to all researchers, unless there is a special exception. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form990 Of Other Organizations | Yes (X) | Form990OfOtherOrganizationsInd |
| Compensation Survey | Yes (X) | CompensationSurveyInd |
| 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 (2 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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Nupur Garg | ||||||||||||||
| VP of Research | $187,300 | $0 | $0 | $0 | $0 | $0 | $7,384 | $0 | $0 | $0 | $194,684 | $0 | $0 | $0 |
| Melissa Kennedy - Exit 1224 | ||||||||||||||
| Chief Executive Officer | $186,940 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $2,279 | $0 | $189,219 | $0 | $0 | $0 |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 1 | ContributionCnt |
| Noncash Contributions Rpt F990 | $131,317 | NoncashContributionsRptF990Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form8283 Received | 0 | Form8283ReceivedCnt |
| 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 (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Form 990, Part VI, Section B, line 11b | The organization emails the 990 to board members, asking for comments or questions before it is filed. |
| Form 990, Part VI, Section B, line 12c | Annually the entire board reviews the policy and a vote is taken. Additionally, when new members are elected they receive the policy and acknowledge their agreement. |
| Form 990, Part VI, Section B, line 15 | We investigated compensation of other like-sized organizations. We also benchmarked against other nonprofits on their websites. Compensation is approved by the board. |
| Form 990, Part VI, Section C, line 19 | The governing documents of the organization are available on the Ohio Secretary of State's website. The financial statements are available within the annual report which is available upon request. The conflict of interest policy is available upon request. |
| Form 990, Part XI, line 9: | Change in Beneficial Interest in Trust 721. |
| Form 990, Part XII, Line 2c: | There were no changes to the process in the current year. |