HUNTINGTONS DISEASE SOCIETY OF AMERICA INC: Form 990, tax year 2025
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- Organization
- HUNTINGTONS DISEASE SOCIETY OF AMERICA INC (EIN 13-3349872)
- Tax period
- 2025-01-01 to 2025-12-31
- Filed
- 2026-06-24
- IRS object ID
- 202631759349300718
- Schema version
- 2025v4.2
- 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 C
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule J
- Schedule M
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2026-06-24T13:04:24-05:00 | ReturnTs |
| Tax Period End | 2025-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 871353108 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | EISNER ADVISORY GROUP LLC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 733 THIRD AVENUE | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 100172703 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2025-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 133349872 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | HUNTINGTON'S DISEASE SOCIETY | BusinessNameLine1Txt |
| Business Name Line2 | OF AMERICA INC | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | HUNT | BusinessNameControlTxt |
| Phone | 2122421968 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 505 EIGHTH AVENUE SUITE 1402 | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10018 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | AMY GRAY | PersonNm |
| Person Title | PRESIDENT AND CEO | PersonTitleTxt |
| Phone | 2122421968 | PhoneNum |
| Signature | 2026-06-23 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | WILLIAM EPSTEIN | PreparerPersonNm |
| PTIN | P01307171 | PTIN |
| Phone | 2129498700 | PhoneNum |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2025 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | AMY GRAY | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 505 EIGHTH AVENUE SUITE 1402 | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10018 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $14,074,843 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Group Exemption | 9201 | GroupExemptionNum |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.HDSA.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1986 | FormationYr |
| Legal Domicile State | NY | LegalDomicileStateCd |
| Activity Or Mission | SEE SCHEDULE O | ActivityOrMissionDesc |
| Voting Members Governing Body | 14 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 14 | VotingMembersIndependentCnt |
| Total Employee | 38 | TotalEmployeeCnt |
| Total Volunteers | 500 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $9,823,331 | PYContributionsGrantsAmt |
| CY Contributions Grants | $11,378,212 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $204,685 | PYInvestmentIncomeAmt |
| CY Investment Income | $278,265 | CYInvestmentIncomeAmt |
| PY Other Revenue | $146,072 | PYOtherRevenueAmt |
| CY Other Revenue | -$423,954 | CYOtherRevenueAmt |
| PY Total Revenue | $10,174,088 | PYTotalRevenueAmt |
| CY Total Revenue | $11,232,523 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $3,372,058 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $2,298,001 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $4,295,537 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $4,102,983 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $1,264,528 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $3,718,078 | PYOtherExpensesAmt |
| CY Other Expenses | $3,043,924 | CYOtherExpensesAmt |
| PY Total Expenses | $11,385,673 | PYTotalExpensesAmt |
| CY Total Expenses | $9,444,908 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$1,211,585 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $1,787,615 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $17,255,243 | TotalAssetsBOYAmt |
| Total Assets EOY | $17,930,550 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $4,612,999 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $3,514,460 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $12,642,244 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $14,416,090 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | TO IMPROVE THE LIVES OF EVERYONE IMPACTED BY HUNTINGTON'S DISEASE BY PROVIDING SUPPORT, DRIVING ADVOCACY, AND ACCELERATING RESEARCH. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $1,178,929 | ExpenseAmt |
| Grant | $406,772 | GrantAmt |
| Desc | RESEARCH - SUPPORTS RESEARCH AS ADVISED BY ITS SCIENTIFIC ADVISORY BOARD. THE RESEARCH PROJECTS ARE INVOLVED IN FINDING CURES AND TREATMENTS FOR HUNTINGTON'S DISEASE. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $3,175,526 | ExpenseAmt |
| Grant | $1,862,900 | GrantAmt |
| Desc | PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $966,495 | ExpenseAmt |
| Grant | $0 | GrantAmt |
| Desc | COMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $2,073,898 | ExpenseAmt |
| Grant | $28,329 | GrantAmt |
| Desc | EDUCATION PROVIDES INFORMATION AND EDUCATION THROUGH PUBLICATION ANDDISTRIBUTION OF NEWSLETTERS, BROCHURES AND SCIENCE UPDATES | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $2,073,898 | TotalOtherProgSrvcExpenseAmt |
| Total Other Prog Srvc Grant | $28,329 | TotalOtherProgSrvcGrantAmt |
| Total Program Service Expenses | $7,394,848 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | 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 | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | Yes (1) | 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 | Yes (1) | 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 |
| Info In Schedule O Part V | Yes (X) | InfoInScheduleOPartVInd |
| IRP Document | 100 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Employee | 38 | 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 | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Form1098 C Filed | Yes (1) | Form1098CFiledInd |
| 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 | 14 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 14 | 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 | Yes (1) | LocalChaptersInd |
| Policies Reference Chapters | Yes (1) | PoliciesReferenceChaptersInd |
| 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 | WA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | 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 | DAVID TICKER CFO | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 2122421968 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 505 EIGHTH AVENUE SUITE 1402 | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10018 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (22 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 | Key EmployeeKeyEmployeeInd | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|---|---|
| JENNE COLER-DARK | |||||||||
| CHAIR | 6.00 | 3.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| ANGELA ALLEN | |||||||||
| CHAIR ELECT | 6.00 | 3.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| TERESA SRAJER | |||||||||
| PAST CHAIR | 6.00 | 3.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| JAY HUGHES | |||||||||
| SECRETARY | 6.00 | 3.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| CHRISTOPHER DECESARIS | |||||||||
| TREASURER | 6.00 | 3.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| JEFFREY BROWN | |||||||||
| TRUSTEE | 6.00 | 3.00 | Yes (X) | $0 | $0 | $0 | |||
| MARK COE | |||||||||
| TRUSTEE | 6.00 | 3.00 | Yes (X) | $0 | $0 | $0 | |||
| ERIN FURR-STIMMING MD | |||||||||
| TRUSTEE | 6.00 | 3.00 | Yes (X) | $0 | $0 | $0 | |||
| BETH HOFFMAN | |||||||||
| TRUSTEE | 6.00 | 3.00 | Yes (X) | $0 | $0 | $0 | |||
| JONATHAN KLEIN ESQ | |||||||||
| TRUSTEE | 6.00 | 3.00 | Yes (X) | $0 | $0 | $0 | |||
| JAIME HATCHER-MARTIN MD | |||||||||
| TRUSTEE | 6.00 | 3.00 | Yes (X) | $0 | $0 | $0 | |||
| MARA SIFRY | |||||||||
| TRUSTEE | 6.00 | 3.00 | Yes (X) | $0 | $0 | $0 | |||
| AMBER SOUTHWELL PHD | |||||||||
| TRUSTEE | 6.00 | 3.00 | Yes (X) | $0 | $0 | $0 | |||
| DOMINIQUE THOMAS | |||||||||
| TRUSTEE | 6.00 | 3.00 | Yes (X) | $0 | $0 | $0 | |||
| AMY GRAY | |||||||||
| CHIEF EXECUTIVE OFFICER | 35.00 | 3.00 | Yes (X) | $333,963 | $0 | $1,018 | |||
| ROSEMARY COLUCCIO | |||||||||
| CHIEF OPERATIONS OFF (THRU 6/13/25) | 35.00 | 3.00 | Yes (X) | $176,343 | $0 | $17,778 | |||
| ARIK JOHNSON | |||||||||
| CHIEF MISSION OFFICER | 35.00 | 3.00 | $237,342 | $0 | $27,290 | Yes (X) | |||
| DEBORAH BOYD | |||||||||
| REGIONAL DEVELOPMENT DIRECTOR | 35.00 | 3.00 | $135,417 | $0 | $24,253 | Yes (X) | |||
| REBECCA CHAN | |||||||||
| CONTROLLER | 35.00 | 3.00 | $156,410 | $0 | $48,107 | Yes (X) | |||
| MYNELLY PEREZ-ORELLANA | |||||||||
| DIRECTOR, MARKETING & COMMUNICATIONS | 35.00 | 3.00 | $123,303 | $0 | $46,070 | Yes (X) | |||
| JESSICA MARSOLEK | |||||||||
| ASSISTANT DIRECTOR, MISSION PROGRAMS | 35.00 | 3.00 | $119,589 | $0 | $23,390 | Yes (X) | |||
| MELINDA JENSEN | |||||||||
| REGIONAL DEVELOPMENT OFF, NE REGION | 35.00 | 3.00 | $108,819 | $0 | $22,206 | Yes (X) | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $1,391,186 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $210,112 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 10 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (5 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| JW MARRIOTT INDIANAPOLIS | |||||
| 10 S WEST ST | INDIANAPOLIS | IN | 46204 | EVENT SPACE FOR CONVENTION | $522,360 |
| LIBSHAP REALTY CORPORATION | |||||
| 125 PARK AVENUE 11TH FLOOR | NEW YORK | NY | 10017 | REALTY | $330,421 |
| J&R GRAPHICS | |||||
| 56 ELIZABETH AVENUE | ELMWOOD PARK | NJ | 07407 | PRINTING | $164,341 |
| THORN RUN PARTNERS LLC | |||||
| 100 M ST SE | WASHINGTON | DC | 20003 | GOVERNMENT AFFAIRS FIRM | $120,000 |
| TEN EVENTS INC | |||||
| 1170 WHEELER WAY | LANGHORNE | PA | 19047 | AV RENTAL FOR CONVENTION | $118,633 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 7 | CntrctRcvdGreaterThan100KCnt |
| Federated Campaigns | $192,493 | FederatedCampaignsAmt |
| Fundraising | $1,517,554 | FundraisingAmt |
| Related Organizations | $2,506,219 | RelatedOrganizationsAmt |
| All Other Contributions | $7,161,946 | AllOtherContributionsAmt |
| Noncash Contributions | $996,357 | NoncashContributionsAmt |
| Total Contributions | $11,378,212 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $215,522 | TotalRevenueColumnAmt |
| Exclusion | $215,522 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $2,708,197 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $2,645,454 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $62,743 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $62,743 | TotalRevenueColumnAmt |
| Exclusion | $62,743 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $196,866 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $1,517,554 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $196,866 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Other Revenue Misc OtherRevenueMiscGrp (3 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | ExclusionExclusionAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|---|
| RETURNED GRANTS | 900099 | $87,491 | $87,491 | |
| OTHER INCOME | 900099 | $32,150 | $32,150 | |
| LOSS ON DISPOSAL OF WE | 900099 | -$543,595 | -$543,595 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | -$423,954 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $11,232,523 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $32,150 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$177,839 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,205,482 | TotalAmt |
| Program Services | $2,205,482 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $92,519 | TotalAmt |
| Program Services | $92,519 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $747,738 | TotalAmt |
| Program Services | $402,179 | ProgramServicesAmt |
| Management And General | $84,897 | ManagementAndGeneralAmt |
| Fundraising | $260,662 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,434,202 | TotalAmt |
| Program Services | $1,812,300 | ProgramServicesAmt |
| Management And General | $288,694 | ManagementAndGeneralAmt |
| Fundraising | $333,208 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $61,301 | TotalAmt |
| Program Services | $24,194 | ProgramServicesAmt |
| Management And General | $14,329 | ManagementAndGeneralAmt |
| Fundraising | $22,778 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $712,167 | TotalAmt |
| Program Services | $558,618 | ProgramServicesAmt |
| Management And General | $59,294 | ManagementAndGeneralAmt |
| Fundraising | $94,255 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $147,575 | TotalAmt |
| Program Services | $58,313 | ProgramServicesAmt |
| Management And General | $34,362 | ManagementAndGeneralAmt |
| Fundraising | $54,900 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $25,713 | TotalAmt |
| Management And General | $25,713 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $77,087 | TotalAmt |
| Management And General | $77,087 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $30,000 | TotalAmt |
| Program Services | $30,000 | ProgramServicesAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $20,300 | TotalAmt |
| Management And General | $20,300 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $872,704 | TotalAmt |
| Program Services | $668,387 | ProgramServicesAmt |
| Management And General | $76,389 | ManagementAndGeneralAmt |
| Fundraising | $127,928 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $85,919 | TotalAmt |
| Program Services | $71,881 | ProgramServicesAmt |
| Management And General | $3,502 | ManagementAndGeneralAmt |
| Fundraising | $10,536 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $134,199 | TotalAmt |
| Program Services | $94,742 | ProgramServicesAmt |
| Management And General | $21,953 | ManagementAndGeneralAmt |
| Fundraising | $17,504 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $384,855 | TotalAmt |
| Program Services | $288,805 | ProgramServicesAmt |
| Management And General | $24,819 | ManagementAndGeneralAmt |
| Fundraising | $71,231 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $694,697 | TotalAmt |
| Program Services | $636,011 | ProgramServicesAmt |
| Management And General | $5,798 | ManagementAndGeneralAmt |
| Fundraising | $52,888 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $34,521 | TotalAmt |
| Program Services | $25,439 | ProgramServicesAmt |
| Management And General | $2,239 | ManagementAndGeneralAmt |
| Fundraising | $6,843 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $56,434 | TotalAmt |
| Program Services | $42,095 | ProgramServicesAmt |
| Management And General | $3,705 | ManagementAndGeneralAmt |
| Fundraising | $10,634 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| PRINTING & PUBLICATIONS | $169,661 | $115,031 | $226 | $54,404 |
| EQUIPMENT RENTAL | $137,371 | $132,286 | $1,314 | $3,771 |
| POSTAGE & SHIPPING | $85,860 | $23,267 | $3,031 | $59,562 |
| BANK & CREDIT CARD FEES | $67,503 | $6,081 | $2,650 | $58,772 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $167,100 | TotalAmt |
| Program Services | $107,218 | ProgramServicesAmt |
| Management And General | $35,230 | ManagementAndGeneralAmt |
| Fundraising | $24,652 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,444,908 | TotalAmt |
| Program Services | $7,394,848 | ProgramServicesAmt |
| Management And General | $785,532 | ManagementAndGeneralAmt |
| Fundraising | $1,264,528 | FundraisingAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,828,582 | BOYAmt |
| EOY | $6,394,080 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,562,741 | BOYAmt |
| EOY | $2,224,412 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $227,146 | BOYAmt |
| EOY | $237,538 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $246,376 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $116,136 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $162,180 | BOYAmt |
| EOY | $130,240 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,503,140 | BOYAmt |
| EOY | $6,744,523 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,971,454 | BOYAmt |
| EOY | $2,199,757 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $17,255,243 | BOYAmt |
| EOY | $17,930,550 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $380,905 | BOYAmt |
| EOY | $296,141 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,747,581 | BOYAmt |
| EOY | $929,705 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $21,342 | BOYAmt |
| EOY | $26,500 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,463,171 | BOYAmt |
| EOY | $2,262,114 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,612,999 | BOYAmt |
| EOY | $3,514,460 | 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 | $9,322,635 | BOYAmt |
| EOY | $12,103,035 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,319,609 | BOYAmt |
| EOY | $2,313,055 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $12,642,244 | BOYAmt |
| EOY | $14,416,090 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $17,255,243 | BOYAmt |
| EOY | $17,930,550 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | $1,787,615 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $14,227 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | -$27,996 | 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) |
|---|---|---|
| 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 | $12,104,482 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $10,502,410 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,341,469 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $9,823,331 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $11,378,212 | CurrentTaxYearAmt |
| Total | $53,149,904 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $12,104,482 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $10,502,410 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,341,469 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $9,823,331 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $11,378,212 | CurrentTaxYearAmt |
| Total | $53,149,904 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $2,745,519 | SubstantialContributorsTotAmt |
| Public Support Total170 | $50,404,385 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $7,224 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $29,874 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $148,456 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $149,434 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $215,522 | CurrentTaxYearAmt |
| Total | $550,510 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $87,558 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $210,357 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $344,165 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $146,072 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | -$423,954 | CurrentTaxYearAmt |
| Total | $364,198 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $54,064,612 | TotalSupportAmt |
| Public Support CY170 | 0.93230 | PublicSupportCY170Pct |
| Public Support PY170 | 0.92450 | 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: $ 87,558. 2022 AMOUNT: $ 88,549. 2023 AMOUNT: $ 94,300. 2024 AMOUNT: $ 32,415. 2025 AMOUNT: $ 32,150. RETURNED GRANTS - 2022 AMOUNT: $ 121,808. 2023 AMOUNT: $ 48,944. 2024 AMOUNT: $ 113,657. 2025 AMOUNT: $ 87,491. PRIOR YEAR RESCINDED GRANT - 2023 AMOUNT: $ 140,000. GAIN ON LEASE MODIFICATION - 2023 AMOUNT: $ 60,921. LOSS ON DISPOSAL OF WEBSITE COSTS - 2025 AMOUNT: $ -543,595. | 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 C IRS990ScheduleC
| Field | Value | IRS element (for citing) |
|---|---|---|
| Volunteers | 0 | VolunteersInd |
| Paid Staff Or Management | 0 | PaidStaffOrManagementInd |
| Media Advertisements | 0 | MediaAdvertisementsInd |
| Mailings Members | Yes (1) | MailingsMembersInd |
| Publications Or Broadcast | 0 | PublicationsOrBroadcastInd |
| Grants Other Organizations | 0 | GrantsOtherOrganizationsInd |
| Direct Contact Legislators | Yes (1) | DirectContactLegislatorsInd |
| Direct Contact Legislators | $30,000 | DirectContactLegislatorsAmt |
| Rallies Demonstrations | 0 | RalliesDemonstrationsInd |
| Other Activities | 0 | OtherActivitiesInd |
| Total Lobbying Expenditures | $30,000 | TotalLobbyingExpendituresAmt |
| Not Described Section501c3 | 0 | NotDescribedSection501c3Ind |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART II-B, LINE 1: | FormAndLineReferenceDesc |
| Explanation | HDSA SEEKS TO IMPROVE THE LIVES OF MEMBERS OF OUR COMMUNITY LIVING WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES BY LOBBYING FOR FEDERAL LEGISLATION THAT WOULD HAVE A BENEFICIAL IMPACT ON AFFORDABILITY, ACCESS TO CARE, AND INCREASED RESEARCH FUNDING OF HUNTINGTON'S DISEASE | ExplanationTxt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $288,136 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $17,326 | InvestmentEarningsOrLossesAmt |
| End Year Balance | $305,462 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $283,413 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $4,723 | InvestmentEarningsOrLossesAmt |
| End Year Balance | $288,136 | EndYearBalanceAmt |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $271,737 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $11,676 | InvestmentEarningsOrLossesAmt |
| End Year Balance | $283,413 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $268,745 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $2,992 | InvestmentEarningsOrLossesAmt |
| End Year Balance | $271,737 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $268,866 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | -$121 | InvestmentEarningsOrLossesAmt |
| End Year Balance | $268,745 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Prmnnt Endowment Balance EOY | 0.81840 | PrmnntEndowmentBalanceEOYPct |
| Term Endowment Balance EOY | 0.18160 | TermEndowmentBalanceEOYPct |
| Endowments Held Unrelated Org | 0 | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | 0 | EndowmentsHeldRelatedOrgInd |
Leasehold Improvements LeaseholdImprovementsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $113,237 | OtherCostOrOtherBasisAmt |
| Depreciation | $44,756 | DepreciationAmt |
| Book Value | $68,481 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $133,139 | OtherCostOrOtherBasisAmt |
| Depreciation | $71,380 | DepreciationAmt |
| Book Value | $61,759 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $130,240 | TotalBookValueLandBuildingsAmt |
Other Assets Org OtherAssetsOrgGrp (2 entries)
| DescDesc | Book ValueBookValueAmt |
|---|---|
| RIGHT-OF-USE ASSET | $2,197,174 |
| WEBSITE COSTS | $2,583 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Other Assets | $2,199,757 | TotalBookValueOtherAssetsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | LEASE LIABILITY | Desc |
| Amt | $2,262,114 | Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $2,262,114 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $12,678,617 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $14,227 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $208,588 | DonatedServicesAndUseFcltsAmt |
| Other Revenue | $3,749,798 | OtherRevenueAmt |
| Revenue Not Reported | $3,972,613 | RevenueNotReportedAmt |
| Revenue Subtotal | $8,706,004 | RevenueSubtotalAmt |
| Investment Expenses Not Incld | $20,300 | InvestmentExpensesNotIncldAmt |
| Other Revenues Not Included | $2,506,219 | OtherRevenuesNotIncludedAmt |
| Revenue Not Reported Fincl Stmt | $2,526,519 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $11,232,523 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $10,655,578 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $208,588 | DonatedServicesUseFcltsAmt |
| Other Expenses Included | $3,528,601 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $3,737,189 | ExpensesNotReportedAmt |
| Expenses Subtotal | $6,918,389 | ExpensesSubtotalAmt |
| Investment Expenses Not Incld2 | $20,300 | InvestmentExpensesNotIncld2Amt |
| Other Expenses Not Included | $2,506,219 | OtherExpensesNotIncludedAmt |
| Expenses Not Rpt Fincl Stmt | $2,526,519 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $9,444,908 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART V, LINE 4: | THE SOCIETY'S ENDOWMENT CONSISTS OF ONE DONOR-RESTRICTED FUND, ESTABLISHED BY THE DONOR FOR THE PURPOSE OF FUNDING MEDICAL RESEARCH IN THE FIELD OF HUNTINGTON'S DISEASE. |
| PART X, LINE 2: | THE SOCIETY FOLLOWS THE PROVISIONS OF THE FINANCIAL ACCOUNTING STANDARDS BOARD'S (THE "FASB") ACCOUNTING STANDARDS CODIFICATION ("ASC") TOPIC 740, INCOME TAXES, AS IT RELATES TO ACCOUNTING AND REPORTING FOR UNCERTAINTY IN INCOME TAXES. BECAUSE OF THE SOCIETY'S GENERAL TAX-EXEMPT STATUS, MANAGEMENT BELIEVES ASC TOPIC 740 HAS NOT HAD, AND IS NOT ANTICIPATED TO HAVE, A MATERIAL IMPACT ON THE SOCIETY'S FINANCIAL STATEMENTS. |
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | REVENUE FROM HDSA CHAPTERS 3,749,798. |
| PART XI, LINE 4B - OTHER ADJUSTMENTS: | TOTAL PAYMENTS FROM HDSA CHAPTERS 2,506,219. |
| PART XII, LINE 2D - OTHER ADJUSTMENTS: | TOTAL EXPENSES FROM HDSA CHAPTERS 3,500,605. LOSS ON UNCOLLECTIBLE AMOUNTS 27,996. |
| PART XII, LINE 4B - OTHER ADJUSTMENTS: | TOTAL PAYMENTS FROM HDSA CHAPTERS 2,506,219. |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | 0 | 0 | GRANT MAKING | $89,999 |
| NORTH AMERICA | 0 | 0 | GRANT MAKING | $2,520 |
| 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 | $92,519 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $92,519 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | EUROPE (INCLUDING ICELAND & GREENLAND) | RegionTxt |
| Purpose Of Grant | MEDICAL RESEARCH | PurposeOfGrantTxt |
| Cash Grant | $89,999 | CashGrantAmt |
| Manner Of Cash Disbursement | WIRE | MannerOfCashDisbursementTxt |
| Non Cash Assistance | $0 | NonCashAssistanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 1 | Total501c3OrgCnt |
| 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 (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART I, LINE 2: | THE SOCIETY REQUESTS SEMI-ANNUAL FINANCIAL REPORTS FROM GRANTEES' OFFICES. |
| PART I, LINE 3: | AMOUNTS ARE REPORTED USING THE ACCRUAL METHOD OF ACCOUNTING. |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | WALKS | Event1Nm |
| Gross Receipts Event1 | $781,002 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $740,016 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $40,986 | GrossRevenueEvent1Amt |
| Non Cash Prizes Event1 | $20,733 | NonCashPrizesEvent1Amt |
| Rent Facility Costs Event1 | $11,817 | RentFacilityCostsEvent1Amt |
| Food And Beverage Event1 | $1,119 | FoodAndBeverageEvent1Amt |
| Entertainment Event1 | $2,129 | EntertainmentEvent1Amt |
| Other Direct Expenses Event1 | $5,186 | OtherDirectExpensesEvent1Amt |
| Event2 | GALAS | Event2Nm |
| Gross Receipts Event2 | $274,521 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $218,857 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $55,664 | GrossRevenueEvent2Amt |
| Non Cash Prizes Event2 | $1,015 | NonCashPrizesEvent2Amt |
| Rent Facility Costs Event2 | $4,233 | RentFacilityCostsEvent2Amt |
| Food And Beverage Event2 | $37,454 | FoodAndBeverageEvent2Amt |
| Entertainment Event2 | $6,150 | EntertainmentEvent2Amt |
| Other Direct Expenses Event2 | $6,811 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 16 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $658,897 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $558,681 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $100,216 | GrossRevenueOtherEventsAmt |
| Non Cash Prizes Other Events | $4,933 | NonCashPrizesOtherEventsAmt |
| Rent Fclty Costs Other Events | $19,570 | RentFcltyCostsOtherEventsAmt |
| Food And Beverage Other Events | $44,396 | FoodAndBeverageOtherEventsAmt |
| Oth Direct Expnss Other Events | $31,320 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $1,714,420 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $1,517,554 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $196,866 | GrossRevenueTotalEventsAmt |
| Non Cash Prizes Total Events | $26,681 | NonCashPrizesTotalEventsAmt |
| Rent Fclty Costs Total Events | $35,620 | RentFcltyCostsTotalEventsAmt |
| Food And Beverage Total Events | $82,969 | FoodAndBeverageTotalEventsAmt |
| Entertainment Total Events | $8,279 | EntertainmentTotalEventsAmt |
| Oth Direct Expnss Total Events | $43,317 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $196,866 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $0 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (65 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|---|
| ADVENTHEALTH FOUNDATION CENTRAL FLORIDA | |||||||||
| 550 E ROLLINS STREET 6TH FLOOR | ORLANDO | FL | 32803 | 592219301 | 501(C)(3) | $9,000 | $0 | COMMUNITY SERVICES | |
| ALBANY MEDICAL COLLEGE | |||||||||
| 47 NEW SCOTLAND AVENUE MAIL CODE 70 | ALBANY | NY | 122083479 | 141338310 | 501(C)(3) | $34,000 | $0 | COMMUNITY SERVICES | |
| BARROW NEUROLOGICAL INSTITUTE | |||||||||
| 240 WEST THOMAS ROAD STE 301 | PHOENIX | AZ | 85013 | 941196203 | 501(C)(3) | $28,000 | $0 | COMMUNITY SERVICES | |
| BETH ISRAEL DEACONESS MEDICAL CENTER | |||||||||
| 109 BROOKLINE AVENUE RM 215 | BOSTON | MA | 022155491 | 042103881 | 501(C)(3) | $37,500 | $0 | COMMUNITY SERVICES | |
| CLEVELAND CLINIC FOUNDATION | |||||||||
| 9500 EUCLID AVE S-31 | CLEVELAND | OH | 44195 | 340714553 | 501(C)(3) | $28,000 | $0 | COMMUNITY SERVICES | |
| COLE NEUROSCIENCE CLINIC | |||||||||
| 2200 SUTHERLAND AVENUE | KNOXVILLE | TN | 37919 | 311626179 | 501(C)(3) | $17,500 | $0 | COMMUNITY SERVICES | |
| DUKE UNIVERSITY MEDICAL CENTER | |||||||||
| DUMC BOX 2900 | DURHAM | NC | 27710 | 560532129 | 501(C)(3) | $31,500 | $0 | COMMUNITY SERVICES | |
| EMORY UNIVERSITY | |||||||||
| 1599 CLIFTON ROD 4TH FLOOR MAILSTOP | ATLANTA | GA | 30322 | 580566256 | 501(C)(3) | $28,000 | $0 | COMMUNITY SERVICES | 1599-001BH |
| ERLANGER HEALTH SYSTEM | |||||||||
| 979 E THIRD STREETSUITE C830 | CHATTANOOGA | TN | 37373 | 626000101 | 501(C)(3) | $17,500 | $0 | COMMUNITY SERVICES | |
| GEORGETOWN UNIVERSITY HD CERC | |||||||||
| 2115 WISCONSIN AVENUE NW STE 200 | WASHINGTON | DC | 20007 | 530196603 | 501(C)(3) | $34,000 | $0 | COMMUNITY SERVICES | |
| HENNEPIN HEALTHCARE RESEARCH INSTITUTE | |||||||||
| 825 8TH STREET SOUTH | MINNEAPOLIS | MN | 55404 | 411677920 | 501(C)(3) | $29,750 | $0 | COMMUNITY SERVICES | |
| HENRY FORD HEALTH SYSTEM | |||||||||
| 2799 WEST GRAND BLVD CFP-463 | DETROIT | MI | 48202 | 381357020 | 501(C)(3) | $20,000 | $0 | COMMUNITY SERVICES | |
| INDIANA UNIVERSITY | |||||||||
| 1024 E 3RD STREET ROOM 132 | BLOOMINGTON | IN | 47405 | 356001673 | 501(C)(3) | $23,750 | $0 | COMMUNITY SERVICES | |
| JOHNS HOPKINS UNIVERSITY | |||||||||
| 600 N WOLFE STREET CMSC 8-121 | BALTIMORE | MD | 21287 | 520595110 | 501(C)(3) | $36,750 | $0 | COMMUNITY SERVICES | |
| KANSAS UNIVERSITY ENDOWMENT | |||||||||
| 3901 RAINBOW BLVD MS3012 | KANSAS CITY | KS | 66160 | 480547734 | 501(C)(3) | $17,500 | $0 | COMMUNITY SERVICES | |
| MASSACHUSETTS GENERAL HOSPITAL | |||||||||
| DEPT OF NEUROLOGY 149 13TH STREET | CHARLESTOWN | MA | 02129 | 042697983 | 501(C)(3) | $28,000 | $0 | RESEARCH | RM 10126 |
| MASSACHUSETTS GENERAL HOSPITAL | |||||||||
| 55 FRUIT STREET | BOSTON | MA | 02114 | 042697983 | 501(C)(3) | $90,000 | $0 | RESEARCH | |
| MASSACHUSETTS GENERAL HOSPITAL | |||||||||
| 55 FRUIT STREET | BOSTON | MA | 02114 | 042697983 | 501(C)(3) | $90,000 | $0 | COMMUNITY SERVICES | |
| MEDICAL UNIVERSITY OF SOUTH CAROLINA | |||||||||
| 135 RUTLEDGE AVENUE | CHARLESTON | SC | 29425 | 576000722 | 501(C)(3) | $20,000 | $0 | COMMUNITY SERVICES | |
| MOVEMENT DISORDERS FOUNDATION | |||||||||
| PO BOX 886 | ENGLEWOOD | CO | 80151 | 271618835 | 501(C)(3) | $36,500 | $0 | COMMUNITY SERVICES | |
| NORTHWESTERN UNIVERSITY | |||||||||
| 710 N LAKE SHORE DRIVE | CHICAGO | IL | 60611 | 362167817 | 501(C)(3) | $35,750 | $0 | COMMUNITY SERVICES | |
| OCHSNER HEALTH SYSTEM | |||||||||
| 1515 JEFFERSON HWY 7TH FL CLINIC | NEW ORLEANS | LA | 70121 | 720502505 | 501(C)(3) | $27,250 | $0 | COMMUNITY SERVICES | TOWER |
| OHIO STATE UNIVERSITY WEXNER MEDICAL CENTER | |||||||||
| 395 W 12TH AVENUE 7TH FLOOR | COLUMBUS | OH | 43210 | 311145986 | 501(C)(3) | $42,750 | $0 | COMMUNITY SERVICES | |
| OREGON HEALTH & SCIENCE UNIVERSITY | |||||||||
| 3181 SW SAM JACKSON PARK RD | PORTLAND | OR | 97239 | 931176109 | GOVERNMENT | $18,000 | $0 | COMMUNITY SERVICES | |
| PRISMA HEALTH - MIDLAND | |||||||||
| TAYLOR AT MARION STREET | COLUMBIA | SC | 29220 | 582296052 | 501(C)(3) | $22,000 | $0 | COMMUNITY SERVICES | |
| REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS HEALTH | |||||||||
| 4860 Y STREET SUITE 3700 | SACRAMENTO | CA | 95817 | 946036494 | 501(C)(3) | $60,500 | $0 | COMMUNITY SERVICES | |
| REGENTS OF THE UNIVERSITY OF MICHIGAN | |||||||||
| 1540 EAST MEDICAL CENTER DRIVE | ANN ARBOR | MI | 48109 | 386006309 | 501(C)(3) | $100,000 | $0 | RESEARCH | |
| REGENTS UNIVERSITY OF CA LOS ANGELES | |||||||||
| BOX 957089 1125 MURPHY HALL | LOS ANGELES | CA | 90095 | 956006143 | S-CORPORATION | $42,500 | $0 | COMMUNITY SERVICES | |
| ROWAN UNIVERSITY - SCHOOL OF OSTEOPATHIC MEDICINE | |||||||||
| 42 E LAUREL ROAD | STRATFORD | NJ | 08084 | 222764819 | 501(C)(3) | $17,250 | $0 | COMMUNITY SERVICES | |
| RUSH UNIVERSITY MEDICAL CENTER | |||||||||
| 1201 W HARRISON STREET STE 300 | CHICAGO | IL | 60607 | 362174823 | 501(C)(3) | $41,500 | $0 | COMMUNITY SERVICES | |
| SANFORD HEALTH | |||||||||
| 2301 E 60TH STREET N ROUTE 5031 | FARGO | ND | 57104 | 450226909 | 501(C)(3) | $18,000 | $0 | COMMUNITY SERVICES | |
| SELKIRK NEUROLOGY PLLC | |||||||||
| 610 SOUTH SHERMAN STREET STE 201 | SPOKANE | WA | 99202 | 824852913 | LIMITED LIABILITY CO | $9,500 | $0 | COMMUNITY SERVICES | |
| STANFORD UNIVERSITY | |||||||||
| 300 PASTEUR DRIVE A343 | STANFORD | CA | 94308 | 946174066 | 501(C)(3) | $18,000 | $0 | COMMUNITY SERVICES | |
| THE RECTOR & VISITORS OF THE UNIVERSITY OF VIRGINIA | |||||||||
| 1221 LEE STREET PRIMARY CARE CTR | CHARLOTTESVILLE | VA | 22908 | 546001796 | 501(C)(3) | $39,000 | $0 | COMMUNITY SERVICES | 4TH FL ADULT NEUROLOGY |
| THE REGENT OF THE UNIVERSITY OF CALIFORNIA-SAN FRANCISCO | |||||||||
| 2706 MEDIA CENTER DRIVE | LOS ANGELES | CA | 90065 | 946036493 | 501(C)(3) | $27,250 | $0 | COMMUNITY SERVICES | |
| THE RESEARCH FOUNDATION FOR THE STATE UNIVERSITY OF NEW YORK | |||||||||
| W5510 MELVILLE LIBRARY | STONY BROOK | NY | 117943366 | 141368361 | 501(C)(3) | $17,750 | $0 | COMMUNITY SERVICES | |
| THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK | |||||||||
| 622 WEST 168TH STREET PH-19 ROOM | NEW YORK | NY | 10032 | 135598093 | 501(C)(3) | $40,500 | $0 | COMMUNITY SERVICES | 316 |
| TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA | |||||||||
| 3451 WALNUT STREET | PHILADELPHIA | PA | 19104 | 231352685 | 501(C)(3) | $46,500 | $0 | COMMUNITY SERVICES | |
| UCI MOVEMENT DISORDERS PROGRAM | |||||||||
| 150 MEDICAL SURGE 1 | IRVINE | CA | 92697 | 952226406 | 501(C)(3) | $18,000 | $0 | COMMUNITY SERVICES | |
| UNIV OF WASHINGTON | |||||||||
| HSB RR650 BOX 356465 1959 NE | SEATTLE | WA | 98195 | 916001537 | 501(C)(3) | $50,000 | $0 | COMMUNITY SERVICES | PACIFIC STREET |
| UNIVERSITY NEUROLOGY INC | |||||||||
| 77 GOODELL STREET SUITE 310 | BUFFALO | NY | 14203 | 161359213 | 501(C)(3) | $22,000 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF ALABAMA BIRMINGHAM | |||||||||
| 1720 7TH AVENUE S SC 460A1 | BIRMINGHAM | AL | 35294 | 636005396 | 501(C)(3) | $42,000 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES | |||||||||
| 4301 WEST MARKHAM STREET | LITTLE ROCK | AR | 72205 | 716046242 | 501(C)(3) | $18,000 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF CALIFORNIA SAN DIEGO | |||||||||
| 9500 GILMAN DRIVE MC0041 | LA JOLLA | CA | 92093 | 956006144 | 501(C)(3) | $41,750 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF CENTRAL FLORIDA BOARD OF TRUSTEES | |||||||||
| 12201 RESEARCH PARKWAY STE 501 | ORLANDO | FL | 32826 | 592924021 | 501(C)(3) | $9,000 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF CINCINNATI | |||||||||
| 3113 BELLEVUE AVENUE STE 3400 | CINCINNATI | OH | 45219 | 273850988 | 501(C)(3) | $32,250 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF COLORADO DENVER | |||||||||
| PO BOX 910238 | DENVER | CO | 802910238 | 846000555 | 501(C)(3) | $28,750 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF CONNECTICUT HEALTH CENTER | |||||||||
| 263 FARMINGTON AVENUE | FARMINGTON | CT | 06030 | 521725543 | 501(C)(3) | $21,250 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF FLORIDA | |||||||||
| 33 TIGERT HALL PO BOX 113001 | GAINESVILLE | FL | 326113001 | 596002052 | 501(C)(3) | $27,250 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF IOWA DEPARTMENT OF NEUROLOGY | |||||||||
| 200 HAWKINS DR 8820-12JPP | IOWA CITY | IA | 52242 | 426004813 | STATE GOVERNMENT | $36,750 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF LOUISVILLE | |||||||||
| 500 SOUTH PRESTON STREET SUITE 113 | LOUISVILLE | KY | 40202 | 611029626 | 501(C)(3) | $27,250 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF MASSACHUSETTS | |||||||||
| 55 LAKE AVENUE NORTH | WORCESTER | MA | 01605 | 043167352 | IRC SECTION 115 STAT | $15,500 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF MIAMI | |||||||||
| PO BOX 405803 | ATLANTA | GA | 303845803 | 590624458 | 501(C)(3) | $23,750 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF MISSISSIPPI MEDICAL CENTER | |||||||||
| 2500 N STATE STREET | JACKSON | MS | 392164505 | 646008520 | 501(C)(3) | $18,000 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF NEBRASKA MEDICAL CENTER | |||||||||
| 988440 NEBRASKA MEDICAL CENTER | OMAHA | NE | 68198 | 470049123 | 501(C)(3) | $18,000 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF PITTSBURGH PHYSICIANS | |||||||||
| 3600 FORBES AVENUE 9TH FLOOR | PITTSBURGH | PA | 15213 | 232919472 | 501(C)(3) | $35,000 | $0 | COMMUNITY SERVICES | CUBICAL 9 |
| UNIVERSITY OF ROCHESTER MEDICAL CENTER | |||||||||
| 601 ELMWOOD AVENUE BOX 673 | ROCHESTER | NY | 146428673 | 160743209 | 501(C)(3) | $41,000 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF SOUTH FLORIDA | |||||||||
| 13220 USF LAUREL DRIVE ROOM 4105 | TAMPA | FL | 33612 | 593102112 | 501(C)(3) | $42,750 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER | |||||||||
| 6431 FANNIN SUITE 7044 | HOUSTON | TX | 77030 | 741761309 | 501(C)(3) | $47,000 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF UTAH | |||||||||
| 650 KOMAS DRIVE 106A | SALT LAKE CITY | UT | 84108 | 876000525 | 501(C)(3) | $28,000 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF VERMONT HEALTH NETWORK | |||||||||
| 111 COLCHESTER AVENUE | BURLINGTON | VT | 05401 | 452880726 | 501(C)(3) | $22,500 | $0 | COMMUNITY SERVICES | |
| UNIVERSITY OF WISCONSIN - MADISON | |||||||||
| 21 N PARK STREET STE 6401 | MADISON | WI | 537151218 | 396006492 | 501(C)(3) | $18,000 | $0 | COMMUNITY SERVICES | |
| VANDERBILT UNIVERSITY MEDICAL CENTER | |||||||||
| MEDICAL CENTER NORTH A-0118 | NASHVILLE | TN | 37232 | 352528741 | 501(C)(3) | $45,000 | $0 | COMMUNITY SERVICES | |
| VIRGINIA COMMONWEALTH UNIVERSITY | |||||||||
| 800 EAST LEIGH ST SUITE 3100 POB | RICHMOND | VA | 23284 | 546001758 | 501(C)(3) | $23,000 | $0 | COMMUNITY SERVICES | 843039 |
| WASHINGTON UNIVERSITY | |||||||||
| 700 ROSEDALE AVENUE CAMPUS BOX 1034 | ST LOUIS | MO | 63112 | 430653611 | STATE GOVERNMENT | $37,500 | $0 | COMMUNITY SERVICES | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 65 | Total501c3OrgCnt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | THE ORGANIZATION REQUESTS SEMI-ANNUAL FINANCIAL REPORTS FROM RECIPIENTS. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form990 Of Other Organizations | Yes (X) | Form990OfOtherOrganizationsInd |
| Written Employment Contract | Yes (X) | WrittenEmploymentContractInd |
| 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 | Yes (1) | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (6 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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| AMY GRAY | ||||||||||||||
| CHIEF EXECUTIVE OFFICER | $333,963 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $1,018 | $0 | $334,981 | $0 | $0 | $0 |
| ARIK JOHNSON | ||||||||||||||
| CHIEF MISSION OFFICER | $216,251 | $0 | $21,091 | $0 | $0 | $0 | $11,038 | $0 | $16,252 | $0 | $264,632 | $0 | $0 | $0 |
| REBECCA CHAN | ||||||||||||||
| CONTROLLER | $146,410 | $0 | $10,000 | $0 | $0 | $0 | $7,969 | $0 | $40,138 | $0 | $204,517 | $0 | $0 | $0 |
| ROSEMARY COLUCCIO | ||||||||||||||
| CHIEF OPERATIONS OFF (THRU 6/13/25) | $176,343 | $0 | $0 | $0 | $0 | $0 | $8,901 | $0 | $8,877 | $0 | $194,121 | $0 | $0 | $0 |
| MYNELLY PEREZ-ORELLANA | ||||||||||||||
| DIRECTOR, MARKETING & COMMUNICATIONS | $123,303 | $0 | $0 | $0 | $0 | $0 | $6,882 | $0 | $39,188 | $0 | $169,373 | $0 | $0 | $0 |
| DEBORAH BOYD | ||||||||||||||
| REGIONAL DEVELOPMENT DIRECTOR | $135,417 | $0 | $0 | $0 | $0 | $0 | $6,778 | $0 | $17,475 | $0 | $159,670 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART I, LINE 3 | COMPENSATION IS DETERMINED BY A COMBINATION OF A REVIEW AND APPROVAL BY INDEPENDENT PERSONS, COMPARABILITY DATA, AND CONTEMPORANEOUS SUBSTANTIATION OF THE DELIBERATION AND DECISION BY THE BOARD. |
| PART I, LINE 7 | THE BOARD OF TRUSTEES APPROVED NONFIXED BONUS PAYMENTS FOR TWO EMPLOYEES DURING 2025. |
Schedule M IRS990ScheduleM
Cars And Other Vehicles CarsAndOtherVehiclesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 0 | ContributionCnt |
| Noncash Contributions Rpt F990 | $0 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | SEE SUPP INFO | MethodOfDeterminingRevenuesTxt |
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 15 | ContributionCnt |
| Noncash Contributions Rpt F990 | $966,271 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | COMPARABLE SALES | MethodOfDeterminingRevenuesTxt |
Other Non Cash Contri Table OtherNonCashContriTableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Desc | DONATED GOODS | Desc |
| Contribution | 200 | ContributionCnt |
| Noncash Contributions Rpt F990 | $30,086 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | COMPARABLE SALES | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | Yes (1) | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | Yes (1) | ThirdPartiesUsedInd |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART I, COLUMN (B): | THE NUMBER OF CONTRIBUTIONS ARE BASED ON THE NUMBER OF ITEMS RECEIVED. |
| PART I, LINE 32B: | THE SOCIETY IS THE RECIPIENT OF PROCEEDS FROM THE SALES OF VEHICLES THROUGH AN UNRELATED INTERMEDIARY ORGANIZATION. |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART I, LINE 1 | TO IMPROVE THE LIVES OF EVERYONE IMPACTED BY HUNTINGTON'S DISEASE BY PROVIDING SUPPORT, DRIVING ADVOCACY, AND ACCELERATING RESEARCH. |
| FORM 990, PART VI, SECTION B, LINE 11B | MANAGEMENT THOROUGHLY REVIEWS AND SUBSEQUENTLY PROVIDES AN ELECTRONIC DRAFT COPY OF FORM 990 TO THE GOVERNING BODY FOR REVIEW BEFORE FILING WITH THE IRS. FORM 990, STATEMENTS REGARDING OTHER IRS FILINGS AND TAX COMPLIANCE PART 1, QUESTION 5 AND PART V, QUESTION 2A: THE SOCIETY CURRENTLY EMPLOYS 38 INDIVIDUALS. PAYROLL AND BENEFITS ARE PROCESSED THROUGH A PROFESSIONAL EMPLOYER ORGANIZATION (PEO) WHICH FILES THE FORM W-3 ON THE SOCIETY'S BEHALF UNDER THE PEO'S FEDERAL EIN#. THEREFORE THE SOCIETY DOES NOT FILE A FORM W-3. |
| FORM 990, PART VI, SECTION B, LINE 12C | OFFICERS AND TRUSTEES ARE REQUESTED TO ANNUALLY SIGN DOCUMENTATION. |
| FORM 990, PART VI, SECTION B, LINE 15 | COMPENSATION IS DETERMINED BY A COMBINATION OF A REVIEW AND APPROVAL BY INDEPENDENT PERSONS, COMPARABILITY DATA, AND CONTEMPORANEOUS SUBSTANTIATION OF THE DELIBERATION AND DECISION OF THE BOARD. |
| FORM 990, PART VI, SECTION C, LINE 19 | THE SOCIETY MAKES ITS BY-LAWS, ARTICLES OF INCORPORATION, IRS FORM 1023, ANNUAL REPORTS, AUDITED FINANCIAL STATEMENTS, IRS FORM 990 DOCUMENTS, CONFLICT OF INTEREST POLICY AND PRIVACY POLICY AVAILABLE TO THE PUBLIC UPON REQUEST. |
| FORM 990, PART XI, LINE 9: | LOSS ON UNCOLLECTIBLE AMOUNTS -27,996. |
Schedule R IRS990ScheduleR
Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp
Disregarded Entity Name DisregardedEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | HUNTINGTON'S DISEASE SOCIETY OF AMERICA | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 505 EIGHTH AVENUE SUITE 1402 | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10018 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 900658125 | EIN |
| Primary Activities | PROGRAM SRVC | PrimaryActivitiesTxt |
| Legal Domicile State | NY | LegalDomicileStateCd |
| Exempt Code Section | 501(C)(3) | ExemptCodeSectionTxt |
| Public Charity Status | LINE 7 | PublicCharityStatusTxt |
Direct Controlling Entity Name DirectControllingEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | HDSA NAT'L | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Controlled Organization | 0 | ControlledOrganizationInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Receipt Of Int Annts Rnts Rylts | 0 | ReceiptOfIntAnntsRntsRyltsInd |
| Gift Grnt Or Cap Contri To Oth Org | Yes (1) | GiftGrntOrCapContriToOthOrgInd |
| Gift Grnt Cap Contri From Oth Org | Yes (1) | 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 | Yes (1) | PerformOfServicesForOthOrgInd |
| Perform Of Services By Other Org | 0 | PerformOfServicesByOtherOrgInd |
| Sharing Of Facilities | Yes (1) | SharingOfFacilitiesInd |
| Paid Employees Sharing | Yes (1) | 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 |