EB RESEARCH PARTNERSHIP INC: Form 990, tax year 2025

View the entire original 990 at ProPublica ↗

Organization
EB RESEARCH PARTNERSHIP INC (EIN 27-2417202)
Tax period
2025-01-01 to 2025-12-31
Filed
2026-09-22
IRS object ID
202612659349300541
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 ReturnHeader

FieldValueIRS element (for citing)
Return2026-09-22T11:02:31-05:00ReturnTs
Tax Period End2025-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN113066459PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1CERINI & ASSOCIATES LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line13340 VETERANS MEMORIAL HWYAddressLine1Txt
CityBOHEMIACityNm
State AbbreviationNYStateAbbreviationCd
ZIP11716ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2025-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN272417202EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1EB RESEARCH PARTNERSHIP INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlEBREBusinessNameControlTxt
Phone6468440902PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1244 MADISON AVENUE 104AddressLine1Txt
CityNEW YORKCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10016ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonMICHAEL HUNDPersonNm
Person TitleCEOPersonTitleTxt
Phone6468440902PhoneNum
Signature2026-09-22SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonTANIA QUIGLEYPreparerPersonNm
PTINP01549343PTIN
Phone6315821600PhoneNum
Preparation2026-09-22PreparationDt
FieldValueIRS element (for citing)
Tax2025TaxYr

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerMICHAEL HUNDPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1244 MADISON AVENUE 104AddressLine1Txt
CityNEW YORKCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10016ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$8,885,007GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.EBRESEARCH.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2010FormationYr
Legal Domicile StateNYLegalDomicileStateCd
Activity Or MissionTO FUND RESEARCH FOR TREATMENTS AND A CURE FOR EPIDERMOLYSIS BULLOSA.ActivityOrMissionDesc
Voting Members Governing Body12VotingMembersGoverningBodyCnt
Voting Members Independent12VotingMembersIndependentCnt
Total Employee7TotalEmployeeCnt
Total Volunteers44TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$5,491,713PYContributionsGrantsAmt
CY Contributions Grants$7,189,016CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$468,161PYInvestmentIncomeAmt
CY Investment Income$388,276CYInvestmentIncomeAmt
PY Other Revenue-$441,638PYOtherRevenueAmt
CY Other Revenue$667,201CYOtherRevenueAmt
PY Total Revenue$5,518,236PYTotalRevenueAmt
CY Total Revenue$8,244,493CYTotalRevenueAmt
PY Grants And Similar Paid$4,699,297PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$3,728,866CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$995,190PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,087,847CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$950,509CYTotalFundraisingExpenseAmt
PY Other Expenses$1,500,044PYOtherExpensesAmt
CY Other Expenses$1,761,146CYOtherExpensesAmt
PY Total Expenses$7,194,531PYTotalExpensesAmt
CY Total Expenses$6,577,859CYTotalExpensesAmt
PY Revenues Less Expenses-$1,676,295PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$1,666,634CYRevenuesLessExpensesAmt
Total Assets BOY$22,929,761TotalAssetsBOYAmt
Total Assets EOY$23,641,356TotalAssetsEOYAmt
Total Liabilities BOY$6,840,598TotalLiabilitiesBOYAmt
Total Liabilities EOY$5,899,467TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$16,089,163NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$17,741,889NetAssetsOrFundBalancesEOYAmt
MissionEB 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 Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$5,056,072ExpenseAmt
Grant$3,728,866GrantAmt
DescGRANTS 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$5,056,072TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying Activities0LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other SecYes (1)ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (1)IncludeFIN48FootnoteInd
Independent Audit Fincl Stmt0IndependentAuditFinclStmtInd
Consolidated Audit Fincl StmtYes (1)ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign OfficeYes (1)ForeignOfficeInd
Foreign ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash Contri0DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related EntityYes (1)RelatedEntityInd
Related Organization Ctrl EntYes (1)RelatedOrganizationCtrlEntInd
Transaction With Control Ent0TransactionWithControlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document16IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee7EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial AccountYes (1)ForeignFinancialAccountInd
Foreign CountryASForeignCountryCd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members12GoverningBodyVotingMembersCnt
Independent Voting Member12IndependentVotingMemberCnt
Family Or Business RlnYes (1)FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process Other0CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldHIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNMStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldRIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldUTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1THE ORGANIZATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone6468440902PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1244 MADISON AVENUE 104AddressLine1Txt
CityNEW YORKCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10016ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (15 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeInd
JILL VEDDER
CHAIRPERSON5.00Yes (X)Yes (X)$0$0$0
ARI DESHE
VICE CHAIRPERSON1.00Yes (X)Yes (X)$0$0$0
EMILY KUBIK
TREASURER1.00Yes (X)Yes (X)$0$0$0
JENNIFER KAUF
SECRETARY1.00Yes (X)Yes (X)$0$0$0
NATHAN BURMEISTER
DIRECTOR1.00Yes (X)$0$0$0
DANIEL DESHE
DIRECTOR1.00Yes (X)$0$0$0
FAYE DILGEN
DIRECTOR1.00Yes (X)$0$0$0
RIC FIRTH
DIRECTOR1.00Yes (X)$0$0$0
GREG LICHOLAI
DIRECTOR1.00Yes (X)$0$0$0
MICHAEL SACKS
DIRECTOR1.00Yes (X)$0$0$0
MARC SEIDNER
DIRECTOR1.00Yes (X)$0$0$0
ED VEDDER
DIRECTOR1.00Yes (X)$0$0$0
MICHAEL PATRICK HUND
CEO60.00Yes (X)$483,555$0$0
KATRINA PARKE
CHIEF OF STAFF40.00$140,234$0$3,056Yes (X)
ALLISON BOLSHAGETTIGAN
DIRECTOR OF PROGRAMS40.00$147,367$0$6,678Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$771,156TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$9,734TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K3IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (4 entries)

Address Line1ContractorAddress/ForeignAddress/AddressLine1TxtCityContractorAddress/ForeignAddress/CityNmProvince Or StateContractorAddress/ForeignAddress/ProvinceOrStateNmCountryContractorAddress/ForeignAddress/CountryCdForeign PostalContractorAddress/ForeignAddress/ForeignPostalCdServicesServicesDescCompensationCompensationAmtAddress Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCd
DOOR KNOCKER MEDIA INC
280 LADY VALENTINA AVEMAPLEONTARIOCAL6A 4T2MEDIA SERVICES$219,998
YOUR PART-TIME CONTROLLER LLC
ACCOUNTING SERVICES$187,8361600 MARKET STREET SUITE 3425PHILADELPHIAPA19103
KLUNK & MILLAN ADVERTISING DESIGN
ADVERTISING SERVICES$187,5001620 POND ROADALLENTOWNPA18104
DENTONS COHEN & GRIGSBY PC
LEGAL SERVICES$166,930625 LIBERTY AVEPITTSBURGHPA15222
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K4CntrctRcvdGreaterThan100KCnt
Fundraising$712,116FundraisingAmt
All Other Contributions$6,476,900AllOtherContributionsAmt
Total Contributions$7,189,016TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$403,363TotalRevenueColumnAmt
Exclusion$403,363ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$477,604SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$492,691SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$15,087SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$15,087TotalRevenueColumnAmt
Related Or Exempt Func Income-$15,087RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$0FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$712,116ContriRptFundraisingEventAmt
Fundraising Direct Expenses$147,823FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$147,823TotalRevenueColumnAmt
Exclusion-$147,823ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
OTHER INCOME900099$762,183$762,183
GAIN FROM AFFILIATE900099$52,841$52,841
FieldValueIRS element (for citing)
Other Revenue Total$815,024OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$8,244,493TotalRevenueColumnAmt
Related Or Exempt Func Income$799,937RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$255,540ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$3,258,179TotalAmt
Program Services$3,258,179ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$470,687TotalAmt
Program Services$470,687ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$482,955TotalAmt
Program Services$217,330ProgramServicesAmt
Management And General$96,591ManagementAndGeneralAmt
Fundraising$169,034FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$497,438TotalAmt
Program Services$181,996ProgramServicesAmt
Management And General$84,032ManagementAndGeneralAmt
Fundraising$231,410FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$44,028TotalAmt
Program Services$19,097ProgramServicesAmt
Management And General$9,677ManagementAndGeneralAmt
Fundraising$15,254FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$63,426TotalAmt
Program Services$25,215ProgramServicesAmt
Management And General$11,236ManagementAndGeneralAmt
Fundraising$26,975FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$162,844TotalAmt
Program Services$131,936ProgramServicesAmt
Management And General$30,908ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$225,336TotalAmt
Management And General$225,336ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$181,101TotalAmt
Program Services$148,302ProgramServicesAmt
Management And General$25,308ManagementAndGeneralAmt
Fundraising$7,491FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$496,717TotalAmt
Program Services$267,633ProgramServicesAmt
Management And General$288ManagementAndGeneralAmt
Fundraising$228,796FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$177,186TotalAmt
Program Services$116,246ProgramServicesAmt
Management And General$31,217ManagementAndGeneralAmt
Fundraising$29,723FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$104,464TotalAmt
Program Services$25,805ProgramServicesAmt
Management And General$27,098ManagementAndGeneralAmt
Fundraising$51,561FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$121,678TotalAmt
Program Services$39,545ProgramServicesAmt
Management And General$21,294ManagementAndGeneralAmt
Fundraising$60,839FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$175,221TotalAmt
Program Services$154,101ProgramServicesAmt
Management And General$3,858ManagementAndGeneralAmt
Fundraising$17,262FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$4,435TotalAmt
Management And General$4,435ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (2 entries)

DescDescTotalTotalAmtFundraisingFundraisingAmt
PAYMENT PROCESSOR FEES$62,164$62,164
BAD DEBT EXPENSE$50,000$50,000

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$6,577,859TotalAmt
Program Services$5,056,072ProgramServicesAmt
Management And General$571,278ManagementAndGeneralAmt
Fundraising$950,509FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,272,575BOYAmt
EOY$930,838EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$4,899,083BOYAmt
EOY$5,400,011EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$1,595,019BOYAmt
EOY$1,252,474EOYAmt

Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp

FieldValueIRS element (for citing)
BOY$3,577,000BOYAmt
EOY$0EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$72,804BOYAmt
EOY$0EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$59,423LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$7,831LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$46,245BOYAmt
EOY$51,592EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
BOY$9,705,968BOYAmt
EOY$14,437,900EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
BOY$819,932BOYAmt
EOY$1,197,862EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$941,135BOYAmt
EOY$370,679EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$22,929,761BOYAmt
EOY$23,641,356EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$440,010BOYAmt
EOY$271,513EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$6,346,469BOYAmt
EOY$5,372,179EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$54,119BOYAmt
EOY$255,775EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$6,840,598BOYAmt
EOY$5,899,467EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$14,295,644BOYAmt
EOY$16,460,480EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,793,519BOYAmt
EOY$1,281,409EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$16,089,163BOYAmt
EOY$17,741,889EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$22,929,761BOYAmt
EOY$23,641,356EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$1,666,634ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$13,908NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Consolidated Basis Fincl StmtYes (X)ConsolidatedBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$7,177,252CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$6,106,138CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$7,112,051CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$5,491,713CurrentTaxYearMinus1YearAmt
Current Tax Year$7,041,193CurrentTaxYearAmt
Total$32,928,347TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$7,177,252CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$6,106,138CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$7,112,051CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$5,491,713CurrentTaxYearMinus1YearAmt
Current Tax Year$7,041,193CurrentTaxYearAmt
Total$32,928,347TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$8,566,653SubstantialContributorsTotAmt
Public Support Total170$24,361,694PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$9,574CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$283,333CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$552,333CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$468,161CurrentTaxYearMinus1YearAmt
Current Tax Year$374,368CurrentTaxYearAmt
Total$1,687,769TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$466,835CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$271,763CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years-$207,123CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$277,543CurrentTaxYearMinus1YearAmt
Current Tax Year$815,024CurrentTaxYearAmt
Total$1,624,042TotalAmt
FieldValueIRS element (for citing)
Total Support$36,240,158TotalSupportAmt
Gross Receipts Rltd Activities$250,000GrossReceiptsRltdActivitiesAmt
Public Support CY1700.67220PublicSupportCY170Pct
Public Support PY1700.66950PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$16,423OtherCostOrOtherBasisAmt
Depreciation$7,831DepreciationAmt
Book Value$8,592BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$43,000OtherCostOrOtherBasisAmt
Book Value$43,000BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$51,592TotalBookValueLandBuildingsAmt

Other Securities OtherSecuritiesGrp (2 entries)

DescDescBook ValueBookValueAmtMethod ValuationMethodValuationCd
PRIVATELY HELD STOCK$38,882C
EQUITY SECURITIES WITHOUT READILY DETERMINABLE FAIR VALUE$14,399,018C
FieldValueIRS element (for citing)
Total Book Value Securities$14,437,900TotalBookValueSecuritiesAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$8,366,196TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst-$13,908NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$135,611DonatedServicesAndUseFcltsAmt
Revenue Not Reported$121,703RevenueNotReportedAmt
Revenue Subtotal$8,244,493RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$8,244,493TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$6,713,470TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$135,611DonatedServicesUseFcltsAmt
Expenses Not Reported$135,611ExpensesNotReportedAmt
Expenses Subtotal$6,577,859ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$6,577,859TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART X, LINE 2:FormAndLineReferenceDesc
ExplanationMANAGEMENT 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

FieldValueIRS element (for citing)
Grant Records Maintained0GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)

RegionRegionTxtType Of Activities ConductedTypeOfActivitiesConductedTxtSpecific Services ProvidedSpecificServicesProvidedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMPROGRAM SERVICESGRANTS TO RECIPIENTS LOCATED IN THE REGION$375,964
NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATESPROGRAM SERVICESGRANTS TO RECIPIENTS LOCATED IN THE REGION$28,023
EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA,PROGRAM SERVICESGRANTS TO RECIPIENTS LOCATED IN THE REGION$66,700
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$470,687SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$470,687TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (5 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtNon Cash AssistanceNonCashAssistanceAmt
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMMULTI-OMICS OF RECESSIVE DYSTROPHIC EB-ASSOCIATED SQUAMOUS CELL CARCINOMA FOR TARGETED ANTI-TUMOR THERAPY; DEVELOPING E-VIVO AND IN-VIVO BASE AND PRIME EDITING STRATEGIES TO TREAT RECESSIVE DYSTROPHIC EB; AND STRATEGIES FOR EFFICIENT AND LONG-TERM ENGRAFTMENT OF MESENCHYMAL STROMAL CELLS FOR THE TREATMENT OF RECESSIVE DYSTROPHIC EB.$282,274WIRE$0
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMREPOSITIONNING IN EPIDERMOLYSIS BULLOSA$89,100WIRE$0
NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATESEPIDERMOLYSIS BULLOSA CLINICAL RESEARCH CONSORTIUM$14,340WIRE$0
NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATESEPIDERMOLYSIS BULLOSA CLINICAL RESEARCH CONSORTIUM$8,683WIRE$0
EAST ASIA AND THE PACIFICRESEARCH GRANT$66,700WIRE$0
FieldValueIRS element (for citing)
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp OwnershipYes (1)ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationTHE 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

FieldValueIRS element (for citing)
Event1PLUNGE FOR ELODIEEvent1Nm
Gross Receipts Event1$371,870GrossReceiptsEvent1Amt
Charitable Contri Event1$371,870CharitableContriEvent1Amt
Food And Beverage Event1$2,811FoodAndBeverageEvent1Amt
Other Direct Expenses Event1$12,185OtherDirectExpensesEvent1Amt
Event2TRIBECA FILM FETSIVALEvent2Nm
Gross Receipts Event2$80,307GrossReceiptsEvent2Amt
Charitable Contri Event2$80,307CharitableContriEvent2Amt
Rent Facility Costs Event2$11,671RentFacilityCostsEvent2Amt
Food And Beverage Event2$15,563FoodAndBeverageEvent2Amt
Other Direct Expenses Event2$47,897OtherDirectExpensesEvent2Amt
Other Events Total6OtherEventsTotalCnt
Gross Receipts Other Events$259,939GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$259,939CharitableContriOtherEventsAmt
Rent Fclty Costs Other Events$20,579RentFcltyCostsOtherEventsAmt
Food And Beverage Other Events$12,830FoodAndBeverageOtherEventsAmt
Oth Direct Expnss Other Events$24,287OthDirectExpnssOtherEventsAmt
Gross Receipts Total$712,116GrossReceiptsTotalAmt
Charitable Contributions Tot$712,116CharitableContributionsTotAmt
Rent Fclty Costs Total Events$32,250RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events$31,204FoodAndBeverageTotalEventsAmt
Oth Direct Expnss Total Events$84,369OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$147,823DirectExpenseSummaryEventsAmt
Net Income Summary-$147,823NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Recipient Table RecipientTable (17 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxtAddress Line2USAddress/AddressLine2Txt
ASCENSION SETON MEDICAL CENTER
1201 W 38TH STAUSTINTX78705741109643501(C)(3)$8,199$0TO FUND RESEARCH TO FIND A CURE FOR EB
CHILDREN'S HOSPITAL OF PHILADELPHIA
3401 CIVIC CENTER BLVDPHILADELPHIAPA19104231352166501(C)(3)$62,645$0TO FUND RESEARCH TO FIND A CURE FOR EB
CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER
3333 BURNET AVECINCINNATIOH45229310833936501(C)(3)$51,814$0TO FUND RESEARCH TO FIND A CURE FOR EB
COLUMBIA UNIVERSITY
615 WEST 131ST STREET MC 8741NEW YORKNY10027135598093501(C)(3)$205,315$0TO FUND RESEARCH TO FIND A CURE FOR EB
EBLIFESTYLE INC
999 WATERSIDE DR SUITE 2525NORFOLKVA23510853215371501(C)(3)$30,000$0TO FUND RESEARCH TO FIND A CURE FOR EB
NORTHWESTERN UNIVERSITY
633 CLARK STEVANSTONIL60208362167817501(C)(3)$348,042$0TO FUND RESEARCH TO FIND A CURE FOR EB
PHOENIX CHILDREN'S HOSPITAL
1919 E THOMAS RDPHOENIXAZ85016860422559501(C)(3)$12,500$0TO FUND RESEARCH TO FIND A CURE FOR EB
STANFORD UNIVERSITY
3160 PORTER DRIVE SUITE 100PALO ALTOCA94304941156365501(C)(3)$475,000$0TO FUND RESEARCH TO FIND A CURE FOR EB
THOMAS JEFFERSON UNIVERSITY
601 WALNUT STREET SUITE 925EPHILADELPHIAPA191063333231352651501(C)(3)$145,428$0TO FUND RESEARCH TO FIND A CURE FOR EB
UNIVERSITY OF CALIFORNIA SAN DIEGO
9500 GILMAN DRIVELA JOLLACA92093952544535501(C)(3)$11,062$0TO FUND RESEARCH TO FIND A CURE FOR EB
UNIVERSITY OF CHICAGO
5801 S ELLIS AVECHICAGOIL60637362177139501(C)(3)$500,000$0TO FUND RESEARCH TO FIND A CURE FOR EB
UNIVERSITY OF COLORADO
13001 E 17TH PL SUITE W5130AURORACO80045846000555501(C)(3)$784,837$0TO FUND RESEARCH TO FIND A CURE FOR EB
UNIVERSITY OF MINNESOTA
100 CHURCH STREET SEMINNEAPOLISMN55455416007513501(C)(3)$5,111$0TO FUND RESEARCH TO FIND A CURE FOR EB
MAYO CLINIC
200 FIRST STREETROCHESTERMN55905411937751501(C)(3)$22,075$0TO FUND RESEARCH TO FIND A CURE FOR EB
STANFORD UNIVERSITY SCHOOL OF MEDICINE
291 CAMPUS DRIVE LI KA SHINGSTANFORDCA94305941156365501(C)(3)$528,661$0TO FUND RESEARCH TO FIND A CURE FOR EBBUILDING
UNIVERSITY OF FLORIDA
PO BOX 115000GAINESVILLEFL32611596002052501(C)(3)$11,658$0TO FUND RESEARCH TO FIND A CURE FOR EB
UNIVERSITY OF SOTH CAROLINA
1600 HAMPTON STREETCOLUMBIASC29208576001153501(C)(3)$27,808$0TO FUND RESEARCH TO FIND A CURE FOR EB
FieldValueIRS element (for citing)
Total501c3 Org17Total501c3OrgCnt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationTHE 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

FieldValueIRS element (for citing)
Compensation CommitteeYes (X)CompensationCommitteeInd
Form990 Of Other OrganizationsYes (X)Form990OfOtherOrganizationsInd
Compensation SurveyYes (X)CompensationSurveyInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org0CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org0CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed PaymentsYes (1)AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (2 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountBonus Related OrganizationsBonusRelatedOrganizationsAmtOther Compensation Filing OrgOtherCompensationFilingOrgAmtOther Compensation Rltd OrgsOtherCompensationRltdOrgsAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
MICHAEL PATRICK HUND
CEO$333,555$0$150,000$0$0$0$0$0$0$0$483,555$0$0$0
ALLISON BOLSHAGETTIGAN
DIRECTOR OF PROGRAMS$119,367$0$28,000$0$0$0$0$0$6,678$0$154,045$0$0$0

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 7FormAndLineReferenceDesc
ExplanationANNUAL 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 ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION A, LINE 2ED VEDDER AND JILL VEDDER HAVE A FAMILY RELATIONSHIP. ARI DESHE AND DANIEL DESHE HAVE A FAMILY RELATIONSHIP.
FORM 990, PART VI, SECTION B, LINE 11BTHE DRAFT FORM 990 IS REVIEWED BY THE CEO AND THEN PROVIDED ELECTRONICALLY TO THE FULL BOARD OF DIRECTORS AND EXECUTIVE LEADERSHIP FOR REVIEW AND FEEDBACK PRIOR TO FILING WITH THE IRS. ANY QUESTIONS, COMMENTS, OR SUGGESTED REVISIONS RECEIVED ARE CONSIDERED AND INCORPORATED AS APPROPRIATE BEFORE THE RETURN IS FINALIZED AND FILED.
FORM 990, PART VI, SECTION B, LINE 12CTHE 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 15ATHE 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 19ALL ORGANIZATIONAL DOCUMENTS AND FORM 990 ARE AVAILABLE FOR INSPECTION UPON PRIOR WRITTEN REQUEST.
FORM 5471 SCHEDULE CTHE 2025 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, 2025. 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

FieldValueIRS element (for citing)
Business Name Line1EB RESEARCH PARTNERSHIP (AUSTRALIA) LIMITEDBusinessNameLine1Txt

Foreign Address ForeignAddress

FieldValueIRS element (for citing)
Address Line127 BUTLER WAY LEVEL 1AddressLine1Txt
CityTULLAMARINECityNm
Province Or StateVICTORIAProvinceOrStateNm
CountryASCountryCd
Foreign Postal3043ForeignPostalCd
FieldValueIRS element (for citing)
Primary ActivitiesFUNDING RESEARCH TO DISCOVER TREATMENTS & CURES FOR EBPrimaryActivitiesTxt
Legal Domicile Foreign CountryASLegalDomicileForeignCountryCd
Public Charity StatusPUBLIC CHARITYPublicCharityStatusTxt

Direct Controlling Entity Name DirectControllingEntityName

FieldValueIRS element (for citing)
Business Name Line1EB RESEARCH PARTNERSHIP INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Controlled Organization0ControlledOrganizationInd
FieldValueIRS element (for citing)
Receipt Of Int Annts Rnts Rylts0ReceiptOfIntAnntsRntsRyltsInd
Gift Grnt Or Cap Contri To Oth Org0GiftGrntOrCapContriToOthOrgInd
Gift Grnt Cap Contri From Oth OrgYes (1)GiftGrntCapContriFromOthOrgInd
Loans Or Guarantees To Other Org0LoansOrGuaranteesToOtherOrgInd
Loans Or Guarantees From Oth Org0LoansOrGuaranteesFromOthOrgInd
Div Related Organization0DivRelatedOrganizationInd
Asset Sale To Other Org0AssetSaleToOtherOrgInd
Asset Purchase From Other Org0AssetPurchaseFromOtherOrgInd
Asset Exchange0AssetExchangeInd
Rental Of Facilities To Oth Org0RentalOfFacilitiesToOthOrgInd
Rental Of Fclts From Oth Org0RentalOfFcltsFromOthOrgInd
Perform Of Services For Oth Org0PerformOfServicesForOthOrgInd
Perform Of Services By Other Org0PerformOfServicesByOtherOrgInd
Sharing Of Facilities0SharingOfFacilitiesInd
Paid Employees Sharing0PaidEmployeesSharingInd
Reimbursement Paid To Other Org0ReimbursementPaidToOtherOrgInd
Reimbursement Paid By Other Org0ReimbursementPaidByOtherOrgInd
Transfer To Other Org0TransferToOtherOrgInd
Transfer From Other Org0TransferFromOtherOrgInd

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