EB RESEARCH PARTNERSHIP INC: Form 990, tax year 2024
View the entire original 990 at ProPublica ↗
- Organization
- EB RESEARCH PARTNERSHIP INC (EIN 27-2417202)
- Tax period
- 2024-01-01 to 2024-12-31
- Filed
- 2025-08-27
- IRS object ID
- 202512399349300721
- 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 O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2025-08-27T11:26:14-05:00 | ReturnTs |
| Tax Period End | 2024-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 113066459 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CERINI & ASSOCIATES LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 3340 VETERANS MEMORIAL HWY | AddressLine1Txt |
| City | BOHEMIA | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 11716 | 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 | 272417202 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | EB RESEARCH PARTNERSHIP INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | EBRE | BusinessNameControlTxt |
| Phone | 6468440902 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 244 MADISON AVENUE 104 | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10016 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | MICHAEL HUND | PersonNm |
| Person Title | CEO | PersonTitleTxt |
| Phone | 6468440902 | PhoneNum |
| Signature | 2025-08-26 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IRS Responsible Prty Info Curr | 0 | IRSResponsiblePrtyInfoCurrInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | TANIA QUIGLEY | PreparerPersonNm |
| PTIN | P01549343 | PTIN |
| Phone | 6315821600 | PhoneNum |
| Preparation | 2025-08-26 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2024 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | MICHAEL HUND | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 244 MADISON AVENUE 104 | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10016 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $6,237,417 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.EBRESEARCH.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2010 | FormationYr |
| Legal Domicile State | NY | LegalDomicileStateCd |
| Activity Or Mission | TO FUND RESEARCH FOR TREATMENTS AND A CURE FOR EPIDERMOLYSIS BULLOSA. | ActivityOrMissionDesc |
| Voting Members Governing Body | 15 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 15 | VotingMembersIndependentCnt |
| Total Employee | 5 | TotalEmployeeCnt |
| Total Volunteers | 52 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $7,112,051 | PYContributionsGrantsAmt |
| CY Contributions Grants | $5,491,713 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $552,333 | PYInvestmentIncomeAmt |
| CY Investment Income | $468,161 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$233,759 | PYOtherRevenueAmt |
| CY Other Revenue | -$441,638 | CYOtherRevenueAmt |
| PY Total Revenue | $7,430,625 | PYTotalRevenueAmt |
| CY Total Revenue | $5,518,236 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $5,456,354 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $4,699,297 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $1,018,587 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $995,190 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $1,493,358 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $1,177,363 | PYOtherExpensesAmt |
| CY Other Expenses | $1,500,044 | CYOtherExpensesAmt |
| PY Total Expenses | $7,652,304 | PYTotalExpensesAmt |
| CY Total Expenses | $7,194,531 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$221,679 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$1,676,295 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $24,668,019 | TotalAssetsBOYAmt |
| Total Assets EOY | $22,929,761 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $6,902,561 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $6,840,598 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $17,765,458 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $16,089,163 | NetAssetsOrFundBalancesEOYAmt |
| Mission | EB RESEARCH PARTNERSHIP IS THE LARGEST ORGANIZAION DEDICATED TO FUNDING RESEARCH FOR TREATMENTS AND A CURE FOR EPIDERMOLYSIS BULLOSA, A GROUP OF DEVASTATING AND LIFE THREATENING GENETIC SKIN DISORDERS THAT AFFECT CHILDREN FROM BIRTH. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $5,261,143 | ExpenseAmt |
| Grant | $4,699,297 | GrantAmt |
| Desc | GRANTS AND MONEY AWARDED FOR FURTHER RESEARCH. EB RESEARCH PARTNERSHIP FUNDS THE MOST PROMISING, INNOVATIVE AND POTENTIALLY COMMERCIALLY VIABLE TREATMENTS AND POTENTIAL CURES FOR EB. OUR RESEARCH GRANTS INCORPORATE ADVANCES THROUGH THE FIELD OF BIOMEDICINE FOR BETTER TREATMENTS FOR ALL EB SUBTYPES. OUR SCIENTIFIC ADVISORY BOARD REVIEWS ALL GRANT APPLICATIONS SO THAT WE ARE ASSURED THAT GRANTS ARE RELEVANT, INNOVATIVE AND COULD MEANINGFULLY IMPROVE THE QUALITY OF LIFE FOR THOSE LIVING WITH EB. | Desc |
| Total Program Service Expenses | $5,261,143 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | 0 | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | 0 | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | Yes (1) | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | 0 | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | Yes (1) | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | Yes (1) | 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 | 0 | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | Yes (1) | RelatedEntityInd |
| Related Organization Ctrl Ent | Yes (1) | RelatedOrganizationCtrlEntInd |
| Transaction With Control Ent | 0 | TransactionWithControlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 15 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 5 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | Yes (1) | ForeignFinancialAccountInd |
| Foreign Country | AS | ForeignCountryCd |
| 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 | 15 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 15 | IndependentVotingMemberCnt |
| Family Or Business Rln | Yes (1) | 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 | 0 | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | AL | 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 | 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 | IL | 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 | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | 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 | NC | 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 | 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 | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | THE ORGANIZATION | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 6468440902 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 244 MADISON AVENUE 104 | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10016 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (18 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|
| JILL VEDDER | |||||||
| CHAIRPERSON | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| NATHAN BURMEISTER | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| ARI DESHE | |||||||
| VICE CHAIRMAN | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| CHAD CERETTO | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| DANIEL DESHE | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| RIC FIRTH | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| COREY GRAY | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| JENNIFER KAUF | |||||||
| SECRETARY | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| EMILY KUBIK | |||||||
| TREASURER | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| FAYE DILGEN | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| GREG LICHOLAI | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| ED VEDDER | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| TRACY BALDWIN | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| MICHAEL SACKS | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| MARC SEIDNER | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| MICHAEL PATRICK HUND | |||||||
| CEO | 60.00 | Yes (X) | $466,331 | $0 | $0 | ||
| IMANI RIBADENEYRA | |||||||
| CHIEF MARKETING OFFICER | 40.00 | $218,812 | $0 | $13,732 | Yes (X) | ||
| ALLISON MCGETTIGAN | |||||||
| COMMUNICATIONS & OPERATIONS DIRECTOR | 40.00 | $117,138 | $0 | $0 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $802,281 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $13,732 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 3 | 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 | $1,599,763 | FundraisingAmt |
| Related Organizations | $167,597 | RelatedOrganizationsAmt |
| All Other Contributions | $3,724,353 | AllOtherContributionsAmt |
| Total Contributions | $5,491,713 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $468,161 | TotalRevenueColumnAmt |
| Exclusion | $468,161 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $0 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $1,599,763 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $719,181 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$719,181 | TotalRevenueColumnAmt |
| Exclusion | -$719,181 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| OTHER INCOME | 900099 | $335,675 | $335,675 |
| LOSS FROM AFFILIATE | 900099 | -$58,132 | -$58,132 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $277,543 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $5,518,236 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $277,543 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$251,020 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,105,896 | TotalAmt |
| Program Services | $4,105,896 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $593,401 | TotalAmt |
| Program Services | $593,401 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $465,731 | TotalAmt |
| Program Services | $46,573 | ProgramServicesAmt |
| Management And General | $23,287 | ManagementAndGeneralAmt |
| Fundraising | $395,871 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $447,375 | TotalAmt |
| Program Services | $140,905 | ProgramServicesAmt |
| Management And General | $3,652 | ManagementAndGeneralAmt |
| Fundraising | $302,818 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $28,084 | TotalAmt |
| Program Services | $9,320 | ProgramServicesAmt |
| Management And General | $525 | ManagementAndGeneralAmt |
| Fundraising | $18,239 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $54,000 | TotalAmt |
| Program Services | $12,246 | ProgramServicesAmt |
| Management And General | $1,242 | ManagementAndGeneralAmt |
| Fundraising | $40,512 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $170,257 | TotalAmt |
| Program Services | $101,159 | ProgramServicesAmt |
| Management And General | $56,330 | ManagementAndGeneralAmt |
| Fundraising | $12,768 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $221,679 | TotalAmt |
| Management And General | $221,679 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $251,612 | TotalAmt |
| Program Services | $24,849 | ProgramServicesAmt |
| Management And General | $20,000 | ManagementAndGeneralAmt |
| Fundraising | $206,763 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $399,443 | TotalAmt |
| Program Services | $134,891 | ProgramServicesAmt |
| Management And General | $37,754 | ManagementAndGeneralAmt |
| Fundraising | $226,798 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $31,673 | TotalAmt |
| Program Services | $79 | ProgramServicesAmt |
| Management And General | $13,105 | ManagementAndGeneralAmt |
| Fundraising | $18,489 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $128,026 | TotalAmt |
| Program Services | $21,338 | ProgramServicesAmt |
| Management And General | $3,201 | ManagementAndGeneralAmt |
| Fundraising | $103,487 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $163,601 | TotalAmt |
| Program Services | $70,486 | ProgramServicesAmt |
| Management And General | $5,111 | ManagementAndGeneralAmt |
| Fundraising | $88,004 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,144 | TotalAmt |
| Management And General | $4,144 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (2 entries)
| DescDesc | TotalTotalAmt | FundraisingFundraisingAmt | Management And GeneralManagementAndGeneralAmt |
|---|---|---|---|
| PAYMENT PROCESSOR FEES | $79,609 | $79,609 | |
| BAD DEBT EXPENSE | $50,000 | $50,000 |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,194,531 | TotalAmt |
| Program Services | $5,261,143 | ProgramServicesAmt |
| Management And General | $440,030 | ManagementAndGeneralAmt |
| Fundraising | $1,493,358 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,177,720 | BOYAmt |
| EOY | $1,272,575 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,772,805 | BOYAmt |
| EOY | $4,899,083 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,940,832 | BOYAmt |
| EOY | $1,595,019 | EOYAmt |
Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,577,000 | BOYAmt |
| EOY | $3,577,000 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $66,964 | BOYAmt |
| EOY | $72,804 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $51,811 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $5,566 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,578 | BOYAmt |
| EOY | $46,245 | EOYAmt |
Investments Other Securities InvestmentsOtherSecuritiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,370,293 | BOYAmt |
| EOY | $9,705,968 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $15,231 | BOYAmt |
| EOY | $819,932 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $745,596 | BOYAmt |
| EOY | $941,135 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $24,668,019 | BOYAmt |
| EOY | $22,929,761 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $127,715 | BOYAmt |
| EOY | $440,010 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,774,846 | BOYAmt |
| EOY | $6,346,469 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $54,119 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,902,561 | BOYAmt |
| EOY | $6,840,598 | 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 | $14,847,882 | BOYAmt |
| EOY | $14,295,644 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,917,576 | BOYAmt |
| EOY | $1,793,519 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $17,765,458 | BOYAmt |
| EOY | $16,089,163 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $24,668,019 | BOYAmt |
| EOY | $22,929,761 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$1,676,295 | ReconcilationRevenueExpnssAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Consolidated Basis Fincl Stmt | Yes (X) | ConsolidatedBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $4,963,857 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,177,252 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $6,106,138 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $7,112,051 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,491,713 | CurrentTaxYearAmt |
| Total | $30,851,011 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $4,963,857 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,177,252 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $6,106,138 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $7,112,051 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,491,713 | CurrentTaxYearAmt |
| Total | $30,851,011 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $8,747,631 | SubstantialContributorsTotAmt |
| Public Support Total170 | $22,103,380 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $32,398 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $9,574 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $283,333 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $552,333 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $468,161 | CurrentTaxYearAmt |
| Total | $1,345,799 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $10,928 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $466,835 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $271,763 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | -$207,123 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $277,543 | CurrentTaxYearAmt |
| Total | $819,946 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $33,016,756 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $250,000 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.66950 | PublicSupportCY170Pct |
| Public Support PY170 | 0.64840 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule D IRS990ScheduleD
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $8,811 | OtherCostOrOtherBasisAmt |
| Depreciation | $5,566 | DepreciationAmt |
| Book Value | $3,245 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $43,000 | OtherCostOrOtherBasisAmt |
| Book Value | $43,000 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $46,245 | TotalBookValueLandBuildingsAmt |
Other Securities OtherSecuritiesGrp (2 entries)
| DescDesc | Book ValueBookValueAmt | Method ValuationMethodValuationCd |
|---|---|---|
| PRIVATELY HELD STOCK | $38,882 | C |
| EQUITY SECURITIES WITHOUT READILY DETERMINABLE FAIR VALUE | $9,667,086 | C |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Securities | $9,705,968 | TotalBookValueSecuritiesAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $5,631,567 | TotalRevEtcAuditedFinclStmtAmt |
| Donated Services And Use Fclts | $113,331 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $113,331 | RevenueNotReportedAmt |
| Revenue Subtotal | $5,518,236 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $5,518,236 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $7,307,862 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $113,331 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $113,331 | ExpensesNotReportedAmt |
| Expenses Subtotal | $7,194,531 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $7,194,531 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART X, LINE 2: | FormAndLineReferenceDesc |
| Explanation | MANAGEMENT EVALUATED EBRP'S TAX POSITIONS AND CONCLUDED THAT THE EBRP HAS NOT TAKEN ANY UNCERTAIN TAX POSITIONS THAT WOULD REQUIRE ADJUSTMENT TO THE FINANCIAL STATEMENTS TO COMPLY WITH THE PROVISIONS OF FASB ASC NO. 740. | ExplanationTxt |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)
| RegionRegionTxt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | PROGRAM SERVICES | GRANTS TO RECIPIENTS LOCATED IN THE REGION | $398,026 |
| NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES | PROGRAM SERVICES | GRANTS TO RECIPIENTS LOCATED IN THE REGION | $19,208 |
| EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, | PROGRAM SERVICES | GRANTS TO RECIPIENTS LOCATED IN THE REGION | $176,167 |
| 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 | $593,401 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $593,401 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (6 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt | Non Cash AssistanceNonCashAssistanceAmt |
|---|---|---|---|---|
| NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES | EPIDERMOLYSIS BULLOSA CLINICAL RESEARCH CONSORTIUM | $7,680 | WIRE | $0 |
| NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES | EPIDERMOLYSIS BULLOSA CLINICAL RESEARCH CONSORTIUM | $6,528 | WIRE | $0 |
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | NONSENSE READTHROUGH USING GENTAMICIN OR ELX-02 IN COMBINATION WITH POTENTIATOR COMPOUNDS FOR THE TREATMENT OF RECESSIVE DYSTROPHIC EPIDERMOLYSIS BULLOSA AND JUNCTIONAL EPIDERMOLYSIS BULLOSA | $302,592 | WIRE | $0 |
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | VALIDATING NEW ANTI-CANCER TARGETS FOR DYSTROPHIC EPIDERMOLYSIS BULLOSA USING PATIENTS DERIVED SKIN ORGANOIDS | $95,434 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | TO FUND RESEARCH TO FIND A CURE FOR EB | $120,927 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | DEVELOPMENT OF A REGISTRY FOR EPIDERMOLYSIS BULLOSA IN INDIA | $55,240 | WIRE | $0 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | Yes (1) | 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 | THE USE OF GRANTS OUTSIDE THE UNITED STATES ARE MONITORED THROUGH A MULTI-TIERED REPORTING PROCEDURE. GRANT AWARDEES ARE REQUIRED TO SUBMIT MILESTONE REPORTS UPON THE COMPLETION OF EACH PROJECT MILESTONE TO DEMONSTRATE PROGRESS AND FLAG ANY BUDGETARY CONCERNS. IN ADDITION, ANNUAL SCIENTIFIC PROGRESS REPORTS ARE REQUIRED EVERY 12 MONTHS TO SUMMARIZE RESEARCH ACTIVITIES AND GRANT EXPENDITURES, UNLESS A RECENT MILESTONE REPORT FULFILLS THE SAME PURPOSE. AT THE CONCLUSION OF EACH GRANT, AWARDEES MUST SUBMIT FINAL REPORTS, INCLUDING A COMPREHENSIVE SCIENTIFIC SUMMARY AND A DETAILED FINANCIAL EXPENDITURE REPORT. BEYOND THESE FORMAL REPORTS, WE EXPECT AWARDEES TO MAINTAIN REGULAR COMMUNICATION WITH OUR TEAM AND MAY ALSO REQUEST AD HOC SUMMARY PROGRESS REPORTS TO MONITOR THE USE OF THE GRANTS MORE CLOSELY OR FREQUENTLY. | ExplanationTxt |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | PLUNGE FOR ELODIE | Event1Nm |
| Gross Receipts Event1 | $475,106 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $475,106 | CharitableContriEvent1Amt |
| Other Direct Expenses Event1 | $80,088 | OtherDirectExpensesEvent1Amt |
| Event2 | REPORTIN' FOR DUTY | Event2Nm |
| Gross Receipts Event2 | $712,372 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $712,372 | CharitableContriEvent2Amt |
| Other Direct Expenses Event2 | $475,402 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 6 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $412,285 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $412,285 | CharitableContriOtherEventsAmt |
| Oth Direct Expnss Other Events | $163,691 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $1,599,763 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $1,599,763 | CharitableContributionsTotAmt |
| Oth Direct Expnss Total Events | $719,181 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $719,181 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$719,181 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (14 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|---|
| ASCENSION SETON MEDICAL CENTER | ||||||||
| 1201 W 38TH ST | AUSTIN | TX | 78705 | 741109643 | 501(C)(3) | $7,035 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB |
| AWS | ||||||||
| 410 TERRY AVENUE NORTH | SEATTLE | WA | 98109 | 204938068 | $64,071 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB | |
| CHILDREN'S HOSPITAL OF PHILADELPHIA | ||||||||
| 3401 CIVIC CENTER BLVD | PHILADELPHIA | PA | 19104 | 231352166 | 501(C)(3) | $385,482 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB |
| CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER | ||||||||
| 3333 BURNET AVE | CINCINNATI | OH | 45229 | 310833936 | 501(C)(3) | $346,734 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB |
| COLUMBIA UNIVERSITY | ||||||||
| 615 WEST 131ST STREET MC 8741 | NEW YORK | NY | 10027 | 135598093 | 501(C)(3) | $6,829 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB |
| NORTHWESTERN UNIVERSITY | ||||||||
| 633 CLARK ST | EVANSTON | IL | 60208 | 362167817 | 501(C)(3) | $948,217 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB |
| PHOENIX CHILDREN'S HOSPITAL | ||||||||
| 1919 E THOMAS RD | PHOENIX | AZ | 85016 | 860422559 | 501(C)(3) | $12,500 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB |
| STANFORD UNIVERSITY | ||||||||
| 3160 PORTER DRIVE SUITE 100 | PALO ALTO | CA | 94304 | 941156365 | 501(C)(3) | $149,150 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB |
| THOMAS JEFFERSON UNIVERSITY | ||||||||
| 601 WALNUT STREET SUITE 925E | PHILADELPHIA | PA | 191063333 | 231352651 | 501(C)(3) | $298,449 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB |
| UNIVERSITY OF COLORADO | ||||||||
| 13001 E 17TH PL SUITE W5130 | AURORA | CO | 80045 | 846000555 | 501(C)(3) | $951,243 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB |
| UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL | ||||||||
| 55 LAKE AVENUE NORTH | WORCESTER | MA | 01655 | 043167352 | $46,340 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB | |
| UNIVERSITY OF SOUTHERN CALIFORNIA | ||||||||
| 1441 EASTLAKE AVENUE ROOM 6322 | LOS ANGELES | CA | 90033 | 951642394 | 501(C)(3) | $265,650 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB |
| ONCONOVA THERAPEUTICS INC | ||||||||
| 12 PENNSTRAIL SUITE 102 | NEWTOWN | PA | 18940 | 223627252 | $200,000 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB | |
| ELIKSA THERAPEUTICS | ||||||||
| 3805 OLD EASTON RD | DOYLESTOWN | PA | 18902 | 112519726 | $250,000 | $0 | TO FUND RESEARCH TO FIND A CURE FOR EB | |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | THE USE OF GRANTS INSIDE THE UNITED STATES ARE MONITORED THROUGH A MULTI-TIERED REPORTING PROCEDURE. GRANT AWARDEES ARE REQUIRED TO SUBMIT MILESTONE REPORTS UPON THE COMPLETION OF EACH PROJECT MILESTONE TO DEMONSTRATE PROGRESS AND FLAG ANY BUDGETARY CONCERNS. IN ADDITION, ANNUAL SCIENTIFIC PROGRESS REPORTS ARE REQUIRED EVERY 12 MONTHS TO SUMMARIZE RESEARCH ACTIVITIES AND GRANT EXPENDITURES, UNLESS A RECENT MILESTONE REPORT FULFILLS THE SAME PURPOSE. AT THE CONCLUSION OF EACH GRANT, AWARDEES MUST SUBMIT FINAL REPORTS, INCLUDING A COMPREHENSIVE SCIENTIFIC SUMMARY AND A DETAILED FINANCIAL EXPENDITURE REPORT. BEYOND THESE FORMAL REPORTS, WE EXPECT AWARDEES TO MAINTAIN REGULAR COMMUNICATION WITH OUR TEAM AND MAY ALSO REQUEST AD HOC SUMMARY PROGRESS REPORTS TO MONITOR THE USE OF THE GRANTS MORE CLOSELY OR FREQUENTLY. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| 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 | Yes (1) | 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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| MICHAEL PATRICK HUND | ||||||||||||||
| CEO | $325,731 | $0 | $140,000 | $0 | $600 | $0 | $0 | $0 | $0 | $0 | $466,331 | $0 | $0 | $0 |
| IMANI RIBADENEYRA | ||||||||||||||
| CHIEF MARKETING OFFICER | $218,812 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $13,732 | $0 | $232,544 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 7 | FormAndLineReferenceDesc |
| Explanation | ANNUAL BONUSES ARE PREDICATED UPON PERFORMANCE AND THE AMOUNT IS DETERMINED VIA QUANTITATIVE AND QUALITATIVE ANALYSIS BY THE COMPENSATION COMMITTEE OF THE BOARD OF DIRECTORS. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 2 | ED VEDDER AND JILL VEDDER HAVE A FAMILY RELATIONSHIP. ARI DESHE AND DANIEL DESHE HAVE A FAMILY RELATIONSHIP. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE DRAFT OF THE FORM 990 IS REVIEWED BY THE CEO AND THEN PROVIDED TO THE FULL BOARD OF DIRECTORS AND EXECUTIVE LEADERSHIP FOR REVIEW, FEEDBACK, AND APPROVAL BEFORE IT IS FILED WITH THE IRS. |
| FORM 990, PART VI, SECTION B, LINE 12C | THE CORPORATION HAS AUTHORIZED THE EXECUTIVE COMMITTEE TO OVERSEE ALL ASPECTS OF THIS POLICY, EXCEPT (I) IF A RELATED PARTY TRANSACTION WOULD OTHERWISE REQUIRE FULL BOARD APPROVAL, THE EXECUTIVE COMMITTEE SHALL SUBMIT THE RELATED PARTY TRANSACTION TO THE BOARD FOR CONSIDERATION, PROVIDING ITS RECOMMENDATION AS TO WHETHER OR NOT TO APPROVE IT, AND (II) RATIFICATION OF A RELATED PARTY TRANSACTION THAT WAS ENTERED INTO WITHOUT REQUISITE APPROVAL SHALL REQUIRE RATIFICATION BY ACTION OF THE BOARD. IF AT ANY TIME ANY COVERED PERSON BELIEVES THAT HE OR SHE MAY HAVE AN INTEREST IN A RELATED PARTY TRANSACTION, SUCH COVERED PERSON SHALL DISCLOSE IN GOOD FAITH THE MATERIAL FACTS REGARDING SUCH INTEREST TO THE EXECUTIVE COMMITTEE. IN ADDITION, AT ANY TIME, THE CORPORATION MAY CIRCULATE A CONFLICT DISCLOSURE QUESTIONNAIRE TO ALL COVERED PERSONS REQUIRING THEM TO DISCLOSE ANY INTERESTS THEY HAVE OR MAY HAVE IN RELATED PARTY TRANACTIONS AND REMINDING THEM TO PROPERLY DISCLOSE ANY THAT MAY EVOLVE IN THE FUTURE. A CONFLICT DISCLOSURE QUESTIONNAIRE MAY ALSO BE FURNISHED TO ANY NEW DIRECTOR PRIOR TO HIS OR HER INITIAL ELECTION AND TO ANY PERSON WHO ASSUMES A POSITION AS AN OFFICE OR MAY BECOME A KEY PERSON OF THE CORPORATION AT THAT TIME. COPIES OF ANY COMPLETED AND SIGNED CONFLICT DISCLOSURE QUESTIONNAIRES SHALL BE SUBMITTED TO THE SECRETARY OF THE BOARD WHO SHALL PROVIDE A COPY OF THEM TO THE CHAIRPERSON OF THE BOARD. WHEN AN ACTUAL OR POSSIBLE CONFLICT OF INTEREST EXISTS, THE MATERIAL FACTS REGARDING THE TRANSACTION OR ARRANGEMENT AND THE INTEREST SHALL BE PRESENTED TO THE EXECUTIVE COMMITTEE FOR A DETERMINATION AS TO WHETHER THE TRANSACTION IS FAIR, REASONABLE AND IN THE CORPORATON'S BEST INTEREST AT THE TIME OF THE DISCUSSION, TAKING INTO ACCOUNT ALL THE RELEVANT CIRCUMSTANCES, INCLUDING THE SPECIFIC RELATED PARTY TRANSACTION AND WHETHER IN THE GOOD FAITH DETERMINATION OF THE EXECUTIVE COMMITTEE THE CORPORATION COULD, WITH REASONABLE EFFORTS, OBTAIN A MORE ADVANTAGEOUS TRANSACTION OR ARRANGEMENT FROM AN ENTITY OR INDIVUDUAL THAT WOULD NOT GIVE RISE TO A CONFLICT. IF A RELATED PARTY TRANSACTION HAS BEEN ENTERED INTO WITHOUT BEING APPROVED AS A RELATED PARTY TRANSACTION, THE CORPORATION MAY, PURSUANT TO THE FOLLOWING REQUIREMENTS, VOTE TO RATIFY SUCH A TRANSACTION. IF SUCH RATIFICATION OCCURS PRIOR TO RECEIPT OF ANY REQUEST FOR INFORMATION BY THE NEW YORK STATE ATTORNEY GENERAL REGARDING THE TRANSACTION, SUCH RATIFICATION SHALL ACT AS A DEFENSE TO AN ACTION BY THE NEW YORK STATE ATTORNEY GENERAL REGARDING SUCH TRANSACTION. |
| FORM 990, PART VI, SECTION B, LINE 15A | THE CEO'S COMPENSATION INCLUDES A REVIEW AND APPROVAL BY THE ORGANIZATION'S GOVERNING BODY. COMPARABILITY DATA FOR SIMILARLY QUALIFIED PERSONS IN FUNCTIONALLY COMPARABLE POSITIONS AT SIMILARLY SITUATED ORGANIZATION IS USED TO DETERMINE THE CEO'S COMPENSATION. ANY DECISIONS INVOLVING THE CEO'S COMPENSATION ARRANGEMENT ARE DOCUMENTED. |
| FORM 990, PART VI, SECTION C, LINE 19 | ALL ORGANIZATIONAL DOCUMENTS AND FORM 990 ARE AVAILABLE FOR INSPECTION UPON PRIOR WRITTEN REQUEST. |
| FORM 5471 SCHEDULE C | THE 2024 AUDIT REFLECTS THE AVERAGE EXCHANGE RATE FOR EACH MONTH, HOWEVER THE 990 USES THE SAME RATE USED FOR CONVERTING AUDS TO USDS FOR THE BALANCE SHEET WHICH IS THE EXCHANGE RATE AS OF DECEMBER 31, 2024. AS A RESULT, US DOLLARS PER THE 990 FOR THE EB RESEARCH AUSTRALIA INCOME STATEMENT DIFFER SLIGHTLY FROM THE AUDITED FINANCIAL STATEMENTS. THE BALANCE SHEET NUMBERS PER THE 990 ARE THE SAME AS THE AUDITED FINANCIAL STATEMENTS. |
Schedule R IRS990ScheduleR
Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp
Disregarded Entity Name DisregardedEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | EB RESEARCH PARTNERSHIP (AUSTRALIA) LIMITED | BusinessNameLine1Txt |
Foreign Address ForeignAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 27 BUTLER WAY LEVEL 1 | AddressLine1Txt |
| City | TULLAMARINE | CityNm |
| Province Or State | VICTORIA | ProvinceOrStateNm |
| Country | AS | CountryCd |
| Foreign Postal | 3043 | ForeignPostalCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Primary Activities | FUNDING RESEARCH TO DISCOVER TREATMENTS & CURES FOR EB | PrimaryActivitiesTxt |
| Legal Domicile Foreign Country | AS | LegalDomicileForeignCountryCd |
| Public Charity Status | PUBLIC CHARITY | PublicCharityStatusTxt |
Direct Controlling Entity Name DirectControllingEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | EB RESEARCH PARTNERSHIP INC | 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 | 0 | 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 | 0 | PerformOfServicesForOthOrgInd |
| Perform Of Services By Other Org | 0 | PerformOfServicesByOtherOrgInd |
| Sharing Of Facilities | 0 | SharingOfFacilitiesInd |
| Paid Employees Sharing | 0 | PaidEmployeesSharingInd |
| Reimbursement Paid To Other Org | 0 | ReimbursementPaidToOtherOrgInd |
| Reimbursement Paid By Other Org | 0 | ReimbursementPaidByOtherOrgInd |
| Transfer To Other Org | 0 | TransferToOtherOrgInd |
| Transfer From Other Org | 0 | TransferFromOtherOrgInd |
Transactions Related Org TransactionsRelatedOrgGrp
Other Organization Name OtherOrganizationName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | EB RESEARCH AUSTRALIA | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transaction Type | C | TransactionTypeTxt |
| Involved | $167,597 | InvolvedAmt |
| Method Of Amount Determination | CASH CONTRIBUTION | MethodOfAmountDeterminationTxt |