CREUTZFELDT-JAKOB DISEASE FOUNDATION INC: Form 990, tax year 2024

View the entire original 990 at ProPublica ↗

Organization
CREUTZFELDT-JAKOB DISEASE FOUNDATION INC (EIN 65-0404623)
Tax period
2024-01-01 to 2024-12-31
Filed
2025-10-31
IRS object ID
202523049349300542
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 ReturnHeader

FieldValueIRS element (for citing)
Return2025-10-31T09:25:44-05:00ReturnTs
Tax Period End2024-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN341322309PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1CIUNI & PANICHI INCBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line125201 CHAGRIN BLVD 200AddressLine1Txt
CityCLEVELANDCityNm
State AbbreviationOHStateAbbreviationCd
ZIP441225683ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2024-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN650404623EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1CREUTZFELDT-JAKOB DISEASE FOUNDATION INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlCREUBusinessNameControlTxt
Phone8006591991PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line13634 WEST MARKET STREET 110AddressLine1Txt
CityAKRONCityNm
State AbbreviationOHStateAbbreviationCd
ZIP44333ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonDEBORAH YOBSPersonNm
Person TitlePRESIDENT/EXECUTIVE DIRECTORPersonTitleTxt
Phone8006591991PhoneNum
Signature2025-10-23SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd
FieldValueIRS element (for citing)
IRS Responsible Prty Info Curr0IRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonMICHAEL KLEIN CPAPreparerPersonNm
PTINP00359504PTIN
Phone2168317171PhoneNum
Preparation2025-10-23PreparationDt
FieldValueIRS element (for citing)
Tax2024TaxYr
Build TS2025-03-06 01:10:19ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerDEBORAH YOBSPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line13634 WEST MARKET STREET 110AddressLine1Txt
CityAKRONCityNm
State AbbreviationOHStateAbbreviationCd
ZIP44333ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$5,676,716GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.CJDFOUNDATION.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1993FormationYr
Legal Domicile StateFLLegalDomicileStateCd
Activity Or MissionTO SUPPORT FAMILIES AFFECTED BY PRION DISEASE, RAISE AWARENESS, AND (CONTINUED ON SCHEDULE O) SUPPORT MEDICAL EDUCATION AND RESEARCH.ActivityOrMissionDesc
Voting Members Governing Body19VotingMembersGoverningBodyCnt
Voting Members Independent19VotingMembersIndependentCnt
Total Employee6TotalEmployeeCnt
Total Volunteers350TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$2,770,443PYContributionsGrantsAmt
CY Contributions Grants$2,463,713CYContributionsGrantsAmt
PY Program Service Revenue$41,100PYProgramServiceRevenueAmt
CY Program Service Revenue$101,200CYProgramServiceRevenueAmt
PY Investment Income$84,302PYInvestmentIncomeAmt
CY Investment Income$341,468CYInvestmentIncomeAmt
PY Other Revenue$47,635PYOtherRevenueAmt
CY Other Revenue-$35,724CYOtherRevenueAmt
PY Total Revenue$2,943,480PYTotalRevenueAmt
CY Total Revenue$2,870,657CYTotalRevenueAmt
PY Grants And Similar Paid$718,205PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$702,920CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$396,748PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$397,492CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$89,001CYTotalFundraisingExpenseAmt
PY Other Expenses$426,645PYOtherExpensesAmt
CY Other Expenses$765,538CYOtherExpensesAmt
PY Total Expenses$1,541,598PYTotalExpensesAmt
CY Total Expenses$1,865,950CYTotalExpensesAmt
PY Revenues Less Expenses$1,401,882PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$1,004,707CYRevenuesLessExpensesAmt
Total Assets BOY$8,137,536TotalAssetsBOYAmt
Total Assets EOY$9,188,820TotalAssetsEOYAmt
Total Liabilities BOY$127,957TotalLiabilitiesBOYAmt
Total Liabilities EOY$47,718TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$8,009,579NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$9,141,102NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionCREUTZFELDT-JAKOB DISEASE (CJD) IS A RARE, RAPIDLY PROGRESSIVE NEURODEGENERATIVE DISEASE, ONE OF SEVERAL PRION DISEASES CAUSED BY PRION PROTEINS THAT MISFOLD IN THE BRAIN. THERE IS NO TREATMENT OR CURE AND THE DISEASE IS INVARIABLY FATAL. (CONTINUED ON SCHEDULE O)MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$503,902ExpenseAmt
DescTHE CJD FOUNDATION'S NATIONWIDE FAMILY SUPPORT PROGRAMS INCLUDE: HELPLINE SUPPORT AND RESOURCES, FAMILY CONFERENCE, FAMILY WORKSHOPS, MONTHLY VIRTUAL SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, CAREGIVER SUPPORT GROUPS, AND REFERRALS TO THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD (TAPCJD). THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR TAPCJD AND OFFERS GUIDANCE, EDUCATION, AND SUPPORT TO FAMILIES AFFECTED BY PRION DISEASE, WHILE COLLECTING NATURAL HISTORY DATA THAT CAN BE USED FOR A VARIETY OF RESEARCH PURPOSES.HELPLINE SUPPORT: THE CJD FOUNDATION RESPONDED TO 2,563 CALLS AND EMAILS IN 2024, PROVIDING INFORMATION AND REFERRALS AND RESPONDING TO QUESTIONS AND CONCERNS FROM FAMILY MEMBERS, (CONTINUED ON SCHEDULE O)MEDICAL PROFESSIONALS, FUNERAL DIRECTORS, AND INFECTION CONTROL SPECIALISTS. WE SENT CAREGIVING BINDERS TO MORE THAN 174 FAMILIES AND HOSPICE PROVIDERS. AT OUR 2024 CJD FOUNDATION FAMILY CONFERENCE, A TOTAL OF 155 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS ATTENDED. CONFERENCE SESSIONS INCLUDED AN UPDATE FROM THE CENTERS FOR DISEASE CONTROL AND PREVENTION, RESEARCH UPDATES, AND INFORMATION ON SURVEILLANCE, TREATMENT, AND EARLY DIAGNOSIS OF CJD.SUPPORT GROUPS, WEBINARS AND SPEAKER SERIES: WE HOSTED 43 TELECONFERENCE SUPPORT GROUPS IN 2024. THESE CALLS ALLOW CONSTITUENTS WHO CANNOT ATTEND IN-PERSON EVENTS TO ACCESS AN EXPERT AND ADDRESS THEIR QUESTIONS AND CONCERNS. INTERVIEWS WITH PRION DISEASE EXPERTS WERE RECORDED AND POSTED TO THE CJD FOUNDATION WEBSITE.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$1,007,819ExpenseAmt
Grant$702,920GrantAmt
Revenue$0RevenueAmt
DescIN 2024, THE CJD FOUNDATION AWARDED $702,920 IN GRANTS TO 8 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 50 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 94 RESEARCH GRANTS SINCE 2006, FUNDING A NUMBER OF GROUNDBREAKING PROJECTS THAT HAVE LED TO IMPORTANT NEW DISCOVERIES. FUNDING COMES FROM FAMILY MEMORIAL RESEARCH GRANTS AND FROM THE FUNDRAISING ACTIVITIES OF THE CJD FOUNDATION.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$41,571ExpenseAmt
DescTHE CJD FOUNDATION HOSTS GRAND ROUND PRESENTATIONS, INFECTION CONTROL SEMINARS, AND FUNERAL EDUCATION AROUND THE COUNTRY, AT NO CHARGE. OUR MEDICAL EDUCATION PROGRAMS ARE INSTRUCTED BY PRION DISEASE EXPERTS. IN 2024, WE PROVIDED MEDICAL EDUCATION:MEDICAL EDUCATION NEUROLOGY GRAND ROUNDS WERE HELD IN: - TEXAS AT DSHS, WHICH INCLUDES STAFF FROM DSHS, HEALTH AND HUMAN SERVICES COMMISSION, LOCAL HEALTH DEPARTMENTS, LOCAL MENTAL HEALTH CENTERS, HOSPITALS, INSTITUTIONS OF HIGHER EDUCATION, AND OTHERS THROUGHOUT TEXAS. - IMED/SALT LAKE VALLEY NEUROLOGY DEPARTMENT (CONTINUED ON SCHEDULE O)- BAYSTATE UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL- CAPE COD FALMOUTH HOSPITAL IN FALMOUTH, MA.FUNERAL EDUCATION PRESENATIONS WERE HELD IN:- INDIANAPOLIS, INDIANAWE ALSO RESPONDED TO REQUESTS FOR INFORMATION FROM 70 MEDICAL PROFESSIONALS VIA OUR HELPLINE, AND MADE INFORMATION AVAILABLE TO MEDICAL, INFECTIOUS DISEASE, HOSPICE AND GENETIC COUNSELING PROFESSIONALS THROUGH OUR WEBSITE, EDUCATIONAL BINDERS, AND ANNUAL CONFERENCE WHICH IS RECORDED AND POSTED ON OUR WEBSITE.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$46,831ExpenseAmt
DescADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERSDesc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$46,831TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$1,600,123TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying ActivitiesYes (1)LobbyingActivitiesInd
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 Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other LiabilitiesYes (1)ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (1)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
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 Required0ScheduleJRequiredInd
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 Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document6IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee6EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
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 Members19GoverningBodyVotingMembersCnt
Independent Voting Member19IndependentVotingMemberCnt
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 FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCOStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldDEStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWAStatesWhereCopyOfReturnIsFldCd
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

FieldValueIRS element (for citing)
PersonDEBORAH R YOBSPersonNm
Phone8006591991PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line13634 W MARKET STREET SUITE 110AddressLine1Txt
CityAKRONCityNm
State AbbreviationOHStateAbbreviationCd
ZIP44333ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (23 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtOfficerOfficerInd
BRIAN APPLEBY
BOARD MEMBER2.00Yes (X)$0$0$0
TREVOR BAIERL
BOARD MEMBER (THROUGH 2/28/24)2.00Yes (X)$0$0$0
MATT COLLINS
BOARD MEMBER2.00Yes (X)$0$0$0
PAMELA FEAR
BOARD MEMBER2.00Yes (X)$0$0$0
LAVONNE HALL
BOARD MEMBER (THROUGH 2/7/24)2.00Yes (X)$0$0$0
CLARENCE HUNTER
BOARD MEMBER2.00Yes (X)$0$0$0
AMANDA BAXLEY KALINSKY
BOARD MEMBER2.00Yes (X)$0$0$0
JANINE KOCK
BOARD MEMBER2.00Yes (X)$0$0$0
PATRICIA MCGILL
TREASURER2.00Yes (X)$0$0$0Yes (X)
KIRSTEN MCGINNIS
SECRETARY2.00Yes (X)$0$0$0Yes (X)
BRENDA MEANEY
BOARD MEMBER2.00Yes (X)$0$0$0
DAVE MORRIS
BOARD MEMBER2.00Yes (X)$0$0$0
FRANK MYERS
BOARD MEMBER2.00Yes (X)$0$0$0
MOLLY NOCERINO
BOARD MEMBER (THROUGH 4/30/24)2.00Yes (X)$0$0$0
JOE POHL
BOARD MEMBER2.00Yes (X)$0$0$0
MARK ROBERTS
BOARD MEMBER2.00Yes (X)$0$0$0
JACOB SCHWISTER
BOARD MEMBER2.00Yes (X)$0$0$0
TIM SCHWISTER
BOARD MEMBER2.00Yes (X)$0$0$0
NANCY SWEELY
BOARD MEMBER2.00Yes (X)$0$0$0
MARIA THACKER-GOETHE
BOARD MEMBER2.00Yes (X)$0$0$0
MICHAEL VITANZA
BOARD MEMBER (THROUGH 7/10/24)2.00Yes (X)$0$0$0
STUART YAFFA
CHAIR2.00Yes (X)$0$0$0Yes (X)
DEBORAH YOBS
PRESIDENT/EXECUTIVE DIRECTOR40.00$111,457$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$111,457TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$0TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 K0TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Fundraising$743,496FundraisingAmt
Government Grants$75,325GovernmentGrantsAmt
All Other Contributions$1,644,892AllOtherContributionsAmt
Total Contributions$2,463,713TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescCONFERENCE INCOMEDesc
Business541900BusinessCd
Total Revenue Column$101,200TotalRevenueColumnAmt
Related Or Exempt Func Income$101,200RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$101,200TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$327,506TotalRevenueColumnAmt
Related Or Exempt Func Income$327,506RelatedOrExemptFuncIncomeAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$2,767,238SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$2,753,276SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$13,962SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$13,962TotalRevenueColumnAmt
Exclusion$13,962ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$14,359FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$743,496ContriRptFundraisingEventAmt
Fundraising Direct Expenses$52,783FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$38,424TotalRevenueColumnAmt
Exclusion-$38,424ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescMISCELLANEOUSDesc
Business541900BusinessCd
Total Revenue Column$2,700TotalRevenueColumnAmt
Related Or Exempt Func Income$2,700RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total$2,700OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,870,657TotalRevenueColumnAmt
Related Or Exempt Func Income$431,406RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion-$24,462ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$200,000TotalAmt
Program Services$200,000ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$502,920TotalAmt
Program Services$502,920ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$111,457TotalAmt
Program Services$87,128ProgramServicesAmt
Management And General$15,302ManagementAndGeneralAmt
Fundraising$9,027FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$252,770TotalAmt
Program Services$197,594ProgramServicesAmt
Management And General$34,702ManagementAndGeneralAmt
Fundraising$20,474FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$3,230TotalAmt
Management And General$3,230ManagementAndGeneralAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$30,035TotalAmt
Program Services$23,479ProgramServicesAmt
Management And General$4,123ManagementAndGeneralAmt
Fundraising$2,433FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$16,105TotalAmt
Management And General$16,105ManagementAndGeneralAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$12,927TotalAmt
Management And General$12,927ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$109,052TotalAmt
Program Services$62,415ProgramServicesAmt
Management And General$31,122ManagementAndGeneralAmt
Fundraising$15,515FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$22,632TotalAmt
Program Services$12,638ProgramServicesAmt
Management And General$9,583ManagementAndGeneralAmt
Fundraising$411FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$25,759TotalAmt
Program Services$17,898ProgramServicesAmt
Management And General$6,007ManagementAndGeneralAmt
Fundraising$1,854FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$198,620TotalAmt
Program Services$198,620ProgramServicesAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$18,918TotalAmt
Management And General$18,918ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$8,914TotalAmt
Management And General$8,914ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
PROGRAM EXPENSE$297,431$297,431
DONATION COLLECTION FEE$16,005$3,043$12,962
FAMILY FUNDRAISING$11,332$11,332
ANNUAL FUND EXPENSE$8,817$8,817

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$19,026TotalAmt
Management And General$12,850ManagementAndGeneralAmt
Fundraising$6,176FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$1,865,950TotalAmt
Program Services$1,600,123ProgramServicesAmt
Management And General$176,826ManagementAndGeneralAmt
Fundraising$89,001FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$251BOYAmt
EOY$300EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$442,999BOYAmt
EOY$298,503EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$35,054BOYAmt
EOY$358,775EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$20,067BOYAmt

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

FieldValueIRS element (for citing)
BOY$7,583BOYAmt
EOY$12,613EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$18,621BOYAmt
EOY$123,997EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$77,763LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$45,637LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$38,069BOYAmt
EOY$32,126EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$7,531,936BOYAmt
EOY$8,352,199EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
BOY$41,667BOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$1,289BOYAmt
EOY$10,307EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$8,137,536BOYAmt
EOY$9,188,820EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$18,694BOYAmt
EOY$38,085EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$77,235BOYAmt

Unsecured Notes Loans Payable UnsecuredNotesLoansPayableGrp

FieldValueIRS element (for citing)
BOY$32,028BOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$9,633EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$127,957BOYAmt
EOY$47,718EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$5,711,402BOYAmt
EOY$6,797,504EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$2,298,177BOYAmt
EOY$2,343,598EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$8,009,579BOYAmt
EOY$9,141,102EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$8,137,536BOYAmt
EOY$9,188,820EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$1,004,707ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$126,816NetUnrlzdGainsLossesInvstAmt
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)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
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$1,732,905CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,482,682CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,735,803CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,770,443CurrentTaxYearMinus1YearAmt
Current Tax Year$2,463,713CurrentTaxYearAmt
Total$12,185,546TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,732,905CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,482,682CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,735,803CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,770,443CurrentTaxYearMinus1YearAmt
Current Tax Year$2,463,713CurrentTaxYearAmt
Total$12,185,546TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,198,567SubstantialContributorsTotAmt
Public Support Total170$10,986,979PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$22,028CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$37,997CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$83,547CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$245,716CurrentTaxYearMinus1YearAmt
Current Tax Year$327,506CurrentTaxYearAmt
Total$716,794TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$165CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$10,270CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$88,001CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$46,635CurrentTaxYearMinus1YearAmt
Current Tax Year$0CurrentTaxYearAmt
Total$145,071TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year$2,700CurrentTaxYearAmt
Total$2,700TotalAmt
FieldValueIRS element (for citing)
Total Support$13,050,111TotalSupportAmt
Gross Receipts Rltd Activities$166,098GrossReceiptsRltdActivitiesAmt
Public Support CY1700.84190PublicSupportCY170Pct
Public Support PY1700.87280PublicSupportPY170Pct
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 C IRS990ScheduleC

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$1,865,950FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$1,865,950FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$243,298FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$60,825FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$186,581CurrentYearMinus3Amt
Current Year Minus2$205,311CurrentYearMinus2Amt
Current Year Minus1$239,784CurrentYearMinus1Amt
Current Year$243,298CurrentYearAmt
Total$874,974TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$1,312,461LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$19,559CurrentYearMinus3Amt
Current Year Minus2$0CurrentYearMinus2Amt
Current Year Minus1$0CurrentYearMinus1Amt
Total$19,559TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$46,645CurrentYearMinus3Amt
Current Year Minus2$51,328CurrentYearMinus2Amt
Current Year Minus1$59,946CurrentYearMinus1Amt
Current Year$60,825CurrentYearAmt
Total$218,744TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$328,116GrassrootsCeilingAmt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$1,616,994BeginningYearBalanceAmt
Investment Earnings Or Losses$83,782InvestmentEarningsOrLossesAmt
Other Expenditures$60,000OtherExpendituresAmt
End Year Balance$1,640,776EndYearBalanceAmt
FieldValueIRS element (for citing)
Prmnnt Endowment Balance EOY0.91300PrmnntEndowmentBalanceEOYPct
Term Endowment Balance EOY0.08700TermEndowmentBalanceEOYPct
Endowments Held Unrelated Org0EndowmentsHeldUnrelatedOrgInd
Endowments Held Related Org0EndowmentsHeldRelatedOrgInd

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$77,763OtherCostOrOtherBasisAmt
Depreciation$45,637DepreciationAmt
Book Value$32,126BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$32,126TotalBookValueLandBuildingsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescLEASE LIABILITY - SHORT TERMDesc
Amt$9,633Amt
FieldValueIRS element (for citing)
Total Liability$9,633TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$3,577,785TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$126,816NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$554,815DonatedServicesAndUseFcltsAmt
Revenue Not Reported$681,631RevenueNotReportedAmt
Revenue Subtotal$2,896,154RevenueSubtotalAmt
Investment Expenses Not Incld$12,927InvestmentExpensesNotIncldAmt
Other Revenues Not Included-$38,424OtherRevenuesNotIncludedAmt
Revenue Not Reported Fincl Stmt-$25,497RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$2,870,657TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$2,446,262TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$554,815DonatedServicesUseFcltsAmt
Other Expenses Included$38,424OtherExpensesIncludedAmt
Expenses Not Reported$593,239ExpensesNotReportedAmt
Expenses Subtotal$1,853,023ExpensesSubtotalAmt
Investment Expenses Not Incld2$12,927InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$12,927ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$1,865,950TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (3 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART X, LINE 2:THE PREPARATION OF FINANCIAL STATEMENTS IN CONFORMITY WITH ACCOUNTING PRINCIPLES GENERALLY ACCEPTED IN THE UNITED STATES OF AMERICA REQUIRES THE FOUNDATION TO REPORT INFORMATION REGARDING ITS EXPOSURE TO VARIOUS TAX POSITIONS TAKEN BY THE FOUNDATION. THE FOUNDATION HAS DETERMINED WHETHER ANY TAX POSITIONS HAVE MET THE RECOGNITION THRESHOLD AND HAVE MEASURED THE FOUNDATION'S EXPOSURE TO THOSE TAX POSITIONS. MANAGEMENT BELIEVES THAT THE FOUNDATION HAS ADEQUATELY ADDRESSED ALL RELEVANT TAX POSITIONS AND THAT THERE ARE NO UNRECORDED TAX LIABILITIES. FEDERAL AND STATE TAX AUTHORITIES GENERALLY HAVE THE RIGHT TO EXAMINE AND AUDIT THE PREVIOUS THREE YEARS OF TAX RETURNS FILED. ANY INTEREST OR PENALTIES ASSESSED TO THE FOUNDATION, OF WHICH THERE WERE NONE, ARE RECORDED IN ADMINISTRATIVE EXPENSES.
PART XI, LINE 4B - OTHER ADJUSTMENTS:SPECIAL EVENTS EXPENSE -38,424.
PART XII, LINE 2D - OTHER ADJUSTMENTS:SPECIAL EVENTS EXPENSE 38,424.

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)

RegionRegionTxtType Of Activities ConductedTypeOfActivitiesConductedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
EUROPE (INCLUDING ICELAND & GREENLAND)GRANTS TO RECIPIENTS$299,804
NORTH AMERICAGRANTS TO RECIPIENTS$203,116
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$502,920SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$502,920TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (5 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtNon Cash AssistanceNonCashAssistanceAmt
EUROPE (INCLUDING ICELAND & GREENLAND)CJD RESEARCH$99,944WIRE TRANSFER$0
EUROPE (INCLUDING ICELAND & GREENLAND)CJD RESEARCH$99,860WIRE TRANSFER$0
NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATESCJD RESEARCH$3,116WIRE TRANSFER$0
NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATESCJD RESEARCH$200,000WIRE TRANSFER$0
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUMCJD RESEARCH$100,000WIRE TRANSFER$0
FieldValueIRS element (for citing)
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
SCHEDULE F, PAGE 1, PART I, LINE 2THE ORGANIZATION AWARDS GRANTS BASED ON PROPOSED RESEARCH BUDGETS AND MONITORS THE STATUS OF THE RESEARCH THROUGH VARIOUS MEANS AS WELL AS UPDATES AND WRITTEN REPORTS ON PROJECTS PROVIDED AT THE FAMILY CONFERENCE.
SCHEDULE F, PAGE 1, PART I, LINE 3SWITZERLAND: $99,944 SPAIN: $99,860 CANADA: $203,116 GERMANY: $100,000

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1STRIDES FOR CJDEvent1Nm
Gross Receipts Event1$757,855GrossReceiptsEvent1Amt
Charitable Contri Event1$743,496CharitableContriEvent1Amt
Gross Revenue Event1$14,359GrossRevenueEvent1Amt
Rent Facility Costs Event1$5,335RentFacilityCostsEvent1Amt
Other Direct Expenses Event1$47,448OtherDirectExpensesEvent1Amt
Gross Receipts Total$757,855GrossReceiptsTotalAmt
Charitable Contributions Tot$743,496CharitableContributionsTotAmt
Gross Revenue Total Events$14,359GrossRevenueTotalEventsAmt
Rent Fclty Costs Total Events$5,335RentFcltyCostsTotalEventsAmt
Oth Direct Expnss Total Events$47,448OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$52,783DirectExpenseSummaryEventsAmt
Net Income Summary-$38,424NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (2 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
CASE WESTERN RESERVE
109000 EUCLID AVENUECLEVELANDOH44106341018922501(C)(3)$100,000$0RESEARCH
NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES
5601 FISHERS LAND SUITE 2G MSC 9804BETHESDAMD208929804530196960$100,000$0RESEARCH
FieldValueIRS element (for citing)
Total501c3 Org2Total501c3OrgCnt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (8 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART I, LINE 1THE MISSION OF THE CREUTZFELDT-JAKOB DISEASE FOUNDATION IS TO SUPPORT FAMILIES AFFECTED BY PRION DISEASE, RAISE AWARENESS, SUPPORT MEDICAL EDUCATION, AND FUND RESEARCH. WE CARRY OUT THIS MISSION THROUGH: -FAMILY SUPPORT INCLUDING A 7-DAY HELPLINE, REFERRALS, SUPPORT GROUPS AND TELECONFERENCE SPEAKER SERIES -EDUCATION AND INFORMATION FOR FAMILIES, CAREGIVERS, MEDICAL PROFESSIONALS, FUNERAL PROFESSIONALS, AND INFECTION CONTROL SPECIALISTS -ADVOCACY WITH PUBLIC POLICY MAKERS -ANNUAL FAMILY CONFERENCE THAT BRINGS TOGETHER AFFECTED FAMILIES AND PRION DISEASE EXPERTS - SUPPORT GROUPS FOR FAMILIES AFFECTED BY CJD -COLLABORATION WITH SCIENTISTS, CLINICIANS, MEDICAL CENTERS, HEALTH AUTHORITIES, PROFESSIONAL ORGANIZATIONS, AND INTERNATIONAL PATIENT ASSOCIATIONS -COMMUNICATION OF CURRENT RESEARCH AND FOUNDATION ACTIVITIES VIA ANNUAL CONFERENCE, WEBSITE, SOCIAL MEDIA, EMAILS, AND FAMILY TELECONFERENCES -RESEARCH GRANT PROGRAM, WHICH INCLUDES NATIONAL AND INTERNATIONAL AWARDEES SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE
FORM 990, PART VI, SECTION A, LINE 2JACOB SCHWISTER (BOARD MEMBER) AND TIM SCHWISTER (BOARD MEMBERS) ARE FAMILY.
FORM 990, PART VI, SECTION B, LINE 11BTHE CREUTZFELDT-JAKOB DISEASE FOUNDATION RECEIVES A COPY OF FORM 990 TO REVIEW BEFORE THE RETURN IS FILED. FORM 990 IS REVIEWED BY THE PRESIDENT AND BOARD OF DIRECTORS FOR REVIEW OF ACCURACY AND COMPLETENESS.
FORM 990, PART VI, SECTION B, LINE 12CTHE CONFLICT OF INTEREST POLICY IS ENFORCED BY THE BOARD AND BOARD MEMBERS WHO ARE REQUIRED TO DISCLOSE KNOWN CONFLICTS.
FORM 990, PART VI, SECTION B, LINE 15ATHE ORGANIZATION RESEARCHED AND COMPARED THE SALARY OF OTHER CEOS WORKING FOR OTHER NON-PROFIT ORGANIZATIONS OF ABOUT THE SAME SIZE. ONCE A FAIR AND COMPARABLE COMPENSATION WAS DETERMINED THE ORGANIZATION PRESENTED THE SALARY TO THE EXECUTIVE BOARD AND THE FULL BOARD FOR APPROVAL. THE CEO WAS NOT PRESENT DURING THE VOTE ON COMPENSATION.
FORM 990, PART VI, SECTION C, LINE 19THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS AND FINANCIAL STATEMENTS AVAILABLE UPON REQUEST.
FORM 990, PAGE 1, PART I, LINE 6THE CJD FOUNDATION'S VOLUNTEERS INCLUDE THOSE WHO HAVE HAD A LOVED ONE AFFECTED, OR WHO UNDERSTAND THE IMPACT OF PRION DISEASE. THEY ARE PASSIONATE ABOUT OUR MISSION AND WANT TO RAISE AWARENESS, EDUCATE MEDICAL PROFESSIONALS AND THE PUBLIC, AND SUPPORT RESEARCH FOR A CURE. VOLUNTEER ROLES INCLUDE ASSISTING WITH OUR HELPLINE, ADVOCACY, MEDICAL EDUCATION, AND FAMILY SUPPORT PROGRAMS AND PEER COUSELING THROUGH SUPPORT GROUPS. SOME VOLUNTEER THEIR SKILLS IN MARKETING, WEB DESIGN, PUBLIC RELATIONS, LEGAL AND FINANCIAL AREAS. OTHERS REVIEW RESEARCH GRANT APPLICATIONS OR ASSIST WITH OUR FAMILY CONFERENCE, FAMILY WORKSHIPS, OR FUNDRAISING/AWARENESS-RAISING EVENTS. IN TOTAL, APPROXIMATELY 350 CONTRIBUTED OVER 6,500 HOURS. WITHOUT THE EFFORTS OF THESE VOLUNTEERS, WE COULD NOT HAVE SERVED OUR COMMUNITY WITH THE PROGRAMS WE OFFER.
FORM 990, PAGE 1, PART I, LINE 2THE ORGANIZATION AWARDS GRANTS BASED ON PROPOSED RESEARCH BUDGETS AND MONITORS THE STATUS OF THE RESEARCH THROUGH VARIOUS MEANS AS WELL AS UPDATES AND WRITTEN REPORTS PROVIDED AT FAMILY CONFERENCE.

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