CREUTZFELDT-JAKOB DISEASE FOUNDATION INC: Form 990, tax year 2022

View the entire original 990 at ProPublica ↗

Organization
CREUTZFELDT-JAKOB DISEASE FOUNDATION INC (EIN 65-0404623)
Tax period
2022-01-01 to 2022-12-31
Filed
2023-10-13
IRS object ID
202322869349300627
Schema version
2022v5.0
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)
Return2023-10-13T09:51:44-04:00ReturnTs
Tax Period End2022-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN341897853PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1CRUM & COMPANYBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line11640 AKRON PENINSULA RD STE 102AddressLine1Txt
CityAKRONCityNm
State AbbreviationOHStateAbbreviationCd
ZIP44313ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2022-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN650404623EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1CREUTZFELDT-JAKOB DISEASEBusinessNameLine1Txt
Business Name Line2FOUNDATION INCBusinessNameLine2Txt
FieldValueIRS element (for citing)
Business Name ControlCREUBusinessNameControlTxt
Phone8006591991PhoneNum

US Address USAddress

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

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonDEBORAH YOBSPersonNm
Person TitlePRESIDENT/EXEC. DIRPersonTitleTxt
Phone2127195900PhoneNum
Signature2023-09-15SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstDEBORAHPersonFirstNm
Person LastYOBSPersonLastNm
FieldValueIRS element (for citing)
SSN999009999SSN
FieldValueIRS element (for citing)
IRS Responsible Prty Info CurrfalseIRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonKEVIN K CRUMPreparerPersonNm
PTINP00255436PTIN
Phone3308671222PhoneNum
Preparation2023-10-10PreparationDt
FieldValueIRS element (for citing)
Tax2022TaxYr
Build TS2023-04-26 12:10:37ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerDEBORAH YOBSPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line13634 WEST MARKET STREET SUITE 110AddressLine1Txt
CityAKRONCityNm
State AbbreviationOHStateAbbreviationCd
ZIP44333ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$4,541,522GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
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 SUPPORT MEDICAL EDUCATION AND RESEARCH.ActivityOrMissionDesc
Voting Members Governing Body20VotingMembersGoverningBodyCnt
Voting Members Independent20VotingMembersIndependentCnt
Total Employee6TotalEmployeeCnt
Total Volunteers340TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$2,482,682PYContributionsGrantsAmt
CY Contributions Grants$2,735,803CYContributionsGrantsAmt
PY Program Service Revenue$10,508PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$46,338PYInvestmentIncomeAmt
CY Investment Income$37,113CYInvestmentIncomeAmt
PY Other Revenue$12,105PYOtherRevenueAmt
CY Other Revenue$89,001CYOtherRevenueAmt
PY Total Revenue$2,551,633PYTotalRevenueAmt
CY Total Revenue$2,861,917CYTotalRevenueAmt
PY Grants And Similar Paid$630,000PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$651,433CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$299,517PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$370,895CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$60,296CYTotalFundraisingExpenseAmt
PY Other Expenses$223,065PYOtherExpensesAmt
CY Other Expenses$252,114CYOtherExpensesAmt
PY Total Expenses$1,152,582PYTotalExpensesAmt
CY Total Expenses$1,274,442CYTotalExpensesAmt
PY Revenues Less Expenses$1,399,051PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$1,587,475CYRevenuesLessExpensesAmt
Total Assets BOY$5,032,702TotalAssetsBOYAmt
Total Assets EOY$6,412,924TotalAssetsEOYAmt
Total Liabilities BOY$80,725TotalLiabilitiesBOYAmt
Total Liabilities EOY$66,562TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$4,951,977NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$6,346,362NetAssetsOrFundBalancesEOYAmt
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. THE 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 SENATORS AND PUBLIC POLICY MAKERS -ANNUAL FAMILY CONFERENCE THAT BRINGS TOGETHER AFFECTED FAMILIES AND PRION DISEASE EXPERTS -FAMILY WORKSHOPS HELD AROUND THE COUNTRY -COLLABORATION WITH SCIENTISTS, CLINICIANS, MEDICAL CENTERS, HEALTH AUTHORITIES, PROFESSIONAL ORGANIZATIONS, AND INTERNATIONAL PATIENT ASMissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$324,143ExpenseAmt
DescTHE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, CAREGIVER SUPPORT GROUPS, AND SUPPORT AND/OR 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 ALMOST 2,000 CALLS AND EMAILS IN 2022, PROVIDING INFORMATION AND REFERRALS AND RESPONDING TO QUESTIONS AND CONCERNS FROM FAMILY MEMBERS, MEDICAL PROFESSIONALS, FUNERAL DIRECTORS, AND INFECTION CONTROL SPECIALISTS. WE SENT CAREGIVING BINDERS TO MORE THAN 68 FAMILIES AND HOSPICE PROVIDERS. THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR THE TAPCJD PROGRAM. VIRTUAL FAMILY CONFERENCE: DURING THE VIRTUAL CONFERENCEMORE MORE THAN 707 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS PARTICIPATIED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2022 BY VIEWING THE LIVE SESSIONS. CLOSE TO 11,000 VIEWED THE SESSIONS ONLINE DURING THE YEAR. 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. QUESTIONAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SUREILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,416 FAMILIES HAVE COMPLETED QUESTIONNAIRES. THIS ENABLES FAMILIES TO DOCUMENT THEIR LOVED ONE'S CASE AND PROVIDES ANNOYMOUS DATA FOR DOCTORS AND SCIENTISTS ON PATTERNS OF SYMPTOMS, DISEASE ONSEST AND DURATION, AND MORE RESULTS ARE COMPLIED THORUGHOUT THE YEAR AND SHARED ANNUALLY AT THE CJD FOUNDATION FAMILY CONFERENCE. SUPPORT GROUPS, WEBINARS AND SPEAKER SERIES: WE HOSTED 30 TELECONFERENCE SUPPORT GROUPS IN 2022. 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 WEBSITEDesc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$692,093ExpenseAmt
Grant$651,433GrantAmt
DescIN 2022, THE CJD FOUNDATION AWARDED 651,433 IN GRANTS TO 10 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 36 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 77 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$33,448ExpenseAmt
DescTHE CJD FOUNDATION HOSTS GRAND ROUNDS PRESENTATION, INFECTION CONTROL SEMINARS, AND FUNERAL EDUCATION AROUND THE COUNTRY, AT NO CHARGE. OUR MEDICAL EDUCATION PROGRAMS ARE INSTRUCTED BY PRION DISEASE EXPERTS. IN 2022, WE PROVIDED MEDICAL EDUCATION, FUNERAL PROGRAM AT THE VIRIGINA FUNERAL DIRECTOR'S ASSOCIATION. WE ALSO RESPONDED TO REQUESTS FOR INFORMATION FROM 80 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$36,617ExpenseAmt
DescADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$36,617TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$1,086,301TotalProgramServiceExpensesAmt
Described In Section501c3Yes (true)DescribedInSection501c3Ind
Schedule B RequiredYes (true)ScheduleBRequiredInd
Political Campaign ActyfalsePoliticalCampaignActyInd
Lobbying ActivitiesYes (true)LobbyingActivitiesInd
Subject To Proxy TaxfalseSubjectToProxyTaxInd
Donor Advised FundfalseDonorAdvisedFundInd
Conservation EasementsfalseConservationEasementsInd
Collections Of ArtfalseCollectionsOfArtInd
Credit CounselingfalseCreditCounselingInd
Donor Rstr Or Quasi EndowmentsfalseDonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (true)ReportLandBuildingEquipmentInd
Report Investments Other SecfalseReportInvestmentsOtherSecInd
Report Program Related InvstfalseReportProgramRelatedInvstInd
Report Other AssetsfalseReportOtherAssetsInd
Report Other LiabilitiesfalseReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (true)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (true)IndependentAuditFinclStmtInd
Consolidated Audit Fincl StmtfalseConsolidatedAuditFinclStmtInd
School OperatingfalseSchoolOperatingInd
Foreign OfficefalseForeignOfficeInd
Foreign ActivitiesYes (true)ForeignActivitiesInd
More Than5000 K To OrgYes (true)MoreThan5000KToOrgInd
More Than5000 K To IndividualsfalseMoreThan5000KToIndividualsInd
Professional FundraisingfalseProfessionalFundraisingInd
Fundraising ActivitiesYes (true)FundraisingActivitiesInd
Gaming ActivitiesfalseGamingActivitiesInd
Operate HospitalfalseOperateHospitalInd
Grants To OrganizationsYes (true)GrantsToOrganizationsInd
Grants To IndividualsfalseGrantsToIndividualsInd
Schedule J RequiredfalseScheduleJRequiredInd
Tax Exempt BondsfalseTaxExemptBondsInd
Engaged In Excess Benefit TransfalseEngagedInExcessBenefitTransInd
PY Excess Benefit TransfalsePYExcessBenefitTransInd
Loan OutstandingfalseLoanOutstandingInd
Grant To Related PersonfalseGrantToRelatedPersonInd
Business Rln With Org MemfalseBusinessRlnWithOrgMemInd
Business Rln With Fam MemfalseBusinessRlnWithFamMemInd
Business Rln With35 Ctrl EntfalseBusinessRlnWith35CtrlEntInd
Deductible Non Cash ContrifalseDeductibleNonCashContriInd
Deductible Art ContributionfalseDeductibleArtContributionInd
Terminate OperationsfalseTerminateOperationsInd
Partial LiquidationfalsePartialLiquidationInd
Disregarded EntityfalseDisregardedEntityInd
Related EntityfalseRelatedEntityInd
Related Organization Ctrl EntfalseRelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd OrgfalseTrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted PrtshpfalseActivitiesConductedPrtshpInd
Schedule O RequiredYes (true)ScheduleORequiredInd
IRP Document6IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee6EmployeeCnt
Employment Tax Returns FiledYes (true)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over LimitfalseUnrelatedBusIncmOverLimitInd
Foreign Financial AccountfalseForeignFinancialAccountInd
Prohibited Tax Shelter TransfalseProhibitedTaxShelterTransInd
Taxable Party NotificationfalseTaxablePartyNotificationInd
Nondeductible ContributionsfalseNondeductibleContributionsInd
Quid Pro Quo ContributionsfalseQuidProQuoContributionsInd
Form8282 Property Disposed OffalseForm8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft CntrctfalseRcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft CntrctfalsePayPremiumsPrsnlBnftCntrctInd
Indoor Tanning ServicesfalseIndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht PymtfalseSubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst IncfalseSubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members20GoverningBodyVotingMembersCnt
Independent Voting Member20IndependentVotingMemberCnt
Family Or Business RlnYes (true)FamilyOrBusinessRlnInd
Delegation Of Mgmt DutiesfalseDelegationOfMgmtDutiesInd
Change To Org DocumentsfalseChangeToOrgDocumentsInd
Material Diversion Or MisusefalseMaterialDiversionOrMisuseInd
Members Or StockholdersfalseMembersOrStockholdersInd
Election Of Board MembersfalseElectionOfBoardMembersInd
Decisions Subject To ApprovafalseDecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (true)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (true)MinutesOfCommitteesInd
Officer Mailing AddressfalseOfficerMailingAddressInd
Local ChaptersfalseLocalChaptersInd
Form990 Provided To Gvrn BodyYes (true)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (true)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (true)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (true)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (true)WhistleblowerPolicyInd
Document Retention PolicyYes (true)DocumentRetentionPolicyInd
Compensation Process CEOYes (true)CompensationProcessCEOInd
Compensation Process OtherfalseCompensationProcessOtherInd
Investment In Joint VenturefalseInvestmentInJointVentureInd
States Where Copy Of Return Is FldOHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCOStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldDEStatesWhereCopyOfReturnIsFldCd
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 (21 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
DEBORAH YOBS
PRESIDENT/EX40.00Yes (X)$111,457$0$0
BRIAN APPLEBY
BOARD MEMBER2.00$0$0$0Yes (X)
TREVOR BAIERL
BOARD MEMBER2.00$0$0$0Yes (X)
PAMELA FEAR
BOARD MEMBER2.00$0$0$0Yes (X)
LAVONNE HALL
BOARD MEMBER2.00$0$0$0Yes (X)
CLARENCE HUNTER
BOARD MEMBER2.00$0$0$0Yes (X)
AMANDA BAXLEY KALINSKY
BOARD MEMBER2.00$0$0$0Yes (X)
JANINE KOCK
BOARD MEMBER2.00$0$0$0Yes (X)
JAY LEVY
BOARD MEMBER2.00$0$0$0Yes (X)
MAYRA LICHTER
CHAIRMAN2.00Yes (X)$0$0$0Yes (X)
PATRICIA MCGILL
SECRETARY2.00Yes (X)$0$0$0Yes (X)
BREANDA MEANEY
BOARD MEMBER2.00$0$0$0Yes (X)
DAVE MORRIS
BOARD MEMBER2.00$0$0$0Yes (X)
MOLLY NOCERINO
BOARD MEMBER2.00$0$0$0Yes (X)
JOE POHL
BOARD MEMBER2.00$0$0$0Yes (X)
TIM SCHWISTER
BOARD MEMBER2.00$0$0$0Yes (X)
DEANA SIMPSON
BOARD MEMBER2.00$0$0$0Yes (X)
MARIA THACKER-GOETHE
BOARD MEMBER2.00$0$0$0Yes (X)
MICHAEL VITANZA
BOARD MEMBER2.00$0$0$0Yes (X)
JEFFREY YAFFA
BOARD MEMBER2.00$0$0$0Yes (X)
STUART YAFFA
TREASURER2.00Yes (X)$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$111,457TotalReportableCompFromOrgAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KfalseTotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
Fundraising$595,795FundraisingAmt
Government Grants$74,396GovernmentGrantsAmt
All Other Contributions$2,065,612AllOtherContributionsAmt
Noncash Contributions$5,003NoncashContributionsAmt
Total Contributions$2,735,803TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$83,547TotalRevenueColumnAmt
Exclusion$83,547ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$1,571,596SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$1,618,030SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$46,434SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$46,434TotalRevenueColumnAmt
Exclusion-$46,434ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$132,404FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$595,795ContriRptFundraisingEventAmt
Fundraising Direct Expenses$61,575FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$70,829TotalRevenueColumnAmt
Exclusion$70,829ExclusionAmt
FieldValueIRS element (for citing)
Gaming Gross Income$10,690GamingGrossIncomeAmt

Net Income From Gaming NetIncomeFromGamingGrp

FieldValueIRS element (for citing)
Total Revenue Column$10,690TotalRevenueColumnAmt
Exclusion$10,690ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescMISCELLANEOUSDesc
Business541900BusinessCd
Total Revenue Column$7,482TotalRevenueColumnAmt
Exclusion$7,482ExclusionAmt
FieldValueIRS element (for citing)
Other Revenue Total$7,482OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,861,917TotalRevenueColumnAmt
Exclusion$126,114ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$247,115TotalAmt
Program Services$247,115ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$404,318TotalAmt
Program Services$404,318ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$111,457TotalAmt
Program Services$84,875ProgramServicesAmt
Management And General$16,785ManagementAndGeneralAmt
Fundraising$9,797FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$231,744TotalAmt
Program Services$181,225ProgramServicesAmt
Management And General$29,612ManagementAndGeneralAmt
Fundraising$20,907FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$27,694TotalAmt
Program Services$21,601ProgramServicesAmt
Management And General$3,600ManagementAndGeneralAmt
Fundraising$2,493FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$12,508TotalAmt
Management And General$12,508ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$55,657TotalAmt
Program Services$43,413ProgramServicesAmt
Management And General$7,236ManagementAndGeneralAmt
Fundraising$5,008FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$21,852TotalAmt
Program Services$6,596ProgramServicesAmt
Management And General$14,909ManagementAndGeneralAmt
Fundraising$347FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$23,415TotalAmt
Program Services$18,264ProgramServicesAmt
Management And General$3,044ManagementAndGeneralAmt
Fundraising$2,107FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$712TotalAmt
Management And General$712ManagementAndGeneralAmt

Interest InterestGrp

FieldValueIRS element (for citing)
Total$121TotalAmt
Management And General$121ManagementAndGeneralAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$1,575TotalAmt
Management And General$1,575ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$6,903TotalAmt
Management And General$6,903ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmt
FAMILY CONFERENCE$35,000$35,000
PROGRAM EXPENSE$25,926$25,926
BANK SERVICE CHARGES$11,926$11,926
DONATION COLLECTION FEES$10,499$10,499

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$46,020TotalAmt
Program Services$7,469ProgramServicesAmt
Management And General$18,914ManagementAndGeneralAmt
Fundraising$19,637FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$1,274,442TotalAmt
Program Services$1,086,301ProgramServicesAmt
Management And General$127,845ManagementAndGeneralAmt
Fundraising$60,296FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$268BOYAmt
EOY$439EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$611,779BOYAmt
EOY$323,687EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$31,692BOYAmt
EOY$62,062EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$2,196BOYAmt
EOY$14,888EOYAmt

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

FieldValueIRS element (for citing)
BOY$7,184BOYAmt
EOY$7,967EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$2,864BOYAmt
EOY$29,591EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$96,364LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$36,893LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$4,445BOYAmt
EOY$59,471EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$4,370,985BOYAmt
EOY$5,913,530EOYAmt

Other Assets Total OtherAssetsTotalGrp

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

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$5,032,702BOYAmt
EOY$6,412,924EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$20,525BOYAmt
EOY$13,417EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$60,200BOYAmt

Unsecured Notes Loans Payable UnsecuredNotesLoansPayableGrp

FieldValueIRS element (for citing)
EOY$53,145EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$80,725BOYAmt
EOY$66,562EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$4,531,977BOYAmt
EOY$5,123,295EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$420,000BOYAmt
EOY$1,223,067EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,951,977BOYAmt
EOY$6,346,362EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$5,032,702BOYAmt
EOY$6,412,924EOYAmt
FieldValueIRS element (for citing)
Info In Schedule O Part XIYes (X)InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss$1,587,475ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$193,090NetUnrlzdGainsLossesInvstAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or ReviewfalseAccountantCompileOrReviewInd
FS AuditedYes (true)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (true)AuditCommitteeInd
Federal Grant Audit RequiredfalseFederalGrantAuditRequiredInd

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$1,511,893CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,552,666CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,732,905CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,482,682CurrentTaxYearMinus1YearAmt
Current Tax Year$2,735,803CurrentTaxYearAmt
Total$10,015,949TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,511,893CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,552,666CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,732,905CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,482,682CurrentTaxYearMinus1YearAmt
Current Tax Year$2,735,803CurrentTaxYearAmt
Total$10,015,949TotalAmt
FieldValueIRS element (for citing)
Public Support Total170$10,015,949PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$7,808CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$16,398CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$22,028CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$37,997CurrentTaxYearMinus1YearAmt
Current Tax Year$83,547CurrentTaxYearAmt
Total$167,778TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$51,818CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$41,225CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$165CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$10,270CurrentTaxYearMinus1YearAmt
Current Tax Year$88,001CurrentTaxYearAmt
Total$191,479TotalAmt
FieldValueIRS element (for citing)
Total Support$10,375,206TotalSupportAmt
Gross Receipts Rltd Activities$134,589GrossReceiptsRltdActivitiesAmt
Public Support CY1700.96540PublicSupportCY170Pct
Public Support PY1700.95770PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Form990 Schedule A Part VI Form990ScheduleAPartVIGrp

FieldValueIRS element (for citing)
Form And Line ReferencePART II, LINE 10FormAndLineReferenceDesc
ExplanationVARIOUS 0ExplanationTxt

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$1,303,105FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$1,303,105FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$205,311FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$51,328FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$170,094CurrentYearMinus3Amt
Current Year Minus2$179,351CurrentYearMinus2Amt
Current Year Minus1$186,581CurrentYearMinus1Amt
Current Year$205,311CurrentYearAmt
Total$741,337TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$1,112,006LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$22,547CurrentYearMinus3Amt
Current Year Minus2$21,013CurrentYearMinus2Amt
Current Year Minus1$19,559CurrentYearMinus1Amt
Total$63,119TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$42,524CurrentYearMinus3Amt
Current Year Minus2$44,838CurrentYearMinus2Amt
Current Year Minus1$46,645CurrentYearMinus1Amt
Current Year$51,328CurrentYearAmt
Total$185,335TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$278,003GrassrootsCeilingAmt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceSCHEDULE C, PART II-AFormAndLineReferenceDesc
ExplanationORGANIZATION MADE ITS 501(H) ELECTION IN 2019.ExplanationTxt

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$43,660OtherCostOrOtherBasisAmt
Depreciation$36,893DepreciationAmt
Book Value$6,767BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$52,704OtherCostOrOtherBasisAmt
Book Value$52,704BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$59,471TotalBookValueLandBuildingsAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$2,730,402TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst-$193,090NetUnrealizedGainsInvstAmt
Other Revenue$61,575OtherRevenueAmt
Revenue Not Reported-$131,515RevenueNotReportedAmt
Revenue Subtotal$2,861,917RevenueSubtotalAmt
Total Revenue Per Form990$2,861,917TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$1,336,017TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included$61,575OtherExpensesIncludedAmt
Expenses Not Reported$61,575ExpensesNotReportedAmt
Expenses Subtotal$1,274,442ExpensesSubtotalAmt
Total Expenses Per Form990$1,274,442TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (3 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
SCHEDULE D, PAGE 3, PART XTHE 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.
SCHEDULE D, PAGE 4, PART XI, LINE 2DSTRIDES FOR CJD EXPENSE 61,575
SCHEDULE D, PAGE 4, PART XII, LINE 2DSTRIDES FOR CJD EXPENSE 61,575

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp (6 entries)

RegionRegionTxtType Of Activities ConductedTypeOfActivitiesConductedTxt
ITALYGRANTS TO RECIPIENTS
CANADAGRANTS TO RECIPIENTS
GERMANYGRANTS TO RECIPIENTS
SCOTLANDGRANTS TO RECIPIENTS
JAPANGRANTS TO RECIPIENTS
SPAINGRANTS TO RECIPIENTS

Grants To Org Outside US GrantsToOrgOutsideUSGrp (6 entries)

Purpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
CJD RESEARCH$50,000WIRE TRANSFER
CJD RESEARCH$50,000WIRE TRANSFER
CJD RESEARCH$98,400WIRE TRANSFER
CJD RESEARCH$48,718WIRE TRANSFER
CJD RESEARCH$100,000WIRE TRANSFER
CJD RESEARCH$57,200WIRE TRANSFER
FieldValueIRS element (for citing)
Transfer To Foreign CorpfalseTransferToForeignCorpInd
Interest In Foreign TrustfalseInterestInForeignTrustInd
Foreign Corp OwnershipfalseForeignCorpOwnershipInd
Passive Foreign Investmest CofalsePassiveForeignInvestmestCoInd
Foreign PartnershipfalseForeignPartnershipInd
Boycott CountriesfalseBoycottCountriesInd

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 UPDATES AND WRITTEN REPORTS ON PROJECTS PROVIDED AT THE FAMILY CONFERENCE.
SCHEDULE F, PAGE 1, PART I, LINE 3ITALY 0 0 CANADA 0 0 GERMANY 0 0 SCOTLAND 0 0 JAPAN 0 0 SPAIN 0 0

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1STRIDES FOR CJDEvent1Nm
Gross Receipts Event1$728,199GrossReceiptsEvent1Amt
Charitable Contri Event1$595,795CharitableContriEvent1Amt
Gross Revenue Event1$132,404GrossRevenueEvent1Amt
Other Direct Expenses Event1$61,575OtherDirectExpensesEvent1Amt
Gross Receipts Total$728,199GrossReceiptsTotalAmt
Charitable Contributions Tot$595,795CharitableContributionsTotAmt
Gross Revenue Total Events$132,404GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$61,575OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$61,575DirectExpenseSummaryEventsAmt
Net Income Summary$70,829NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (3 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
CASE WESTERN RESERVE
10900 EUCLID AVENUECLEVELANDOH44106341018922501C3$100,000RESEARCH
UNIVERSITY OF TEXAS
7000 FANNIN STREETHOUSTONTX77030741761309501C3$100,000RESEARCH
NATIONAL INSTITUTES OF HEALTH
903 SOUTH 4TH STREETHAMILTONMT59840520858115501C3$47,115RESEARCH

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceSCHEDULE I, PAGE 1, PART I, LINE 2FormAndLineReferenceDesc
ExplanationTHE 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 CONFERENCEExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (10 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990 - ORGANIZATION'S 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. THE 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 SENATORS AND PUBLIC POLICY MAKERS -ANNUAL FAMILY CONFERENCE THAT BRINGS TOGETHER AFFECTED FAMILIES AND PRION DISEASE EXPERTS -FAMILY WORKSHOPS HELD AROUND THE COUNTRY -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, 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 COUNSELING 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 WORKSHOPS, OR FUNDRAISING/AWARENESS- RAISING EVENTS. IN TOTAL, 340 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 2, PART III, LINE 4ATHE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, CAREGIVER SUPPORT GROUPS, AND SUPPORT AND/OR 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 ALMOST 2,000 CALLS AND EMAILS IN 2022, PROVIDING INFORMATION AND REFERRALS AND RESPONDING TO QUESTIONS AND CONCERNS FROM FAMILY MEMBERS, MEDICAL PROFESSIONALS, FUNERAL DIRECTORS, AND INFECTION CONTROL SPECIALISTS. WE SENT CAREGIVING BINDERS TO MORE THAN 68 FAMILIES AND HOSPICE PROVIDERS. THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR THE TAPCJD PROGRAM. VIRTUAL FAMILY CONFERENCE: DURING THE VIRTUAL CONFERENCEMORE MORE THAN 707 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS PARTICIPATIED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2022 BY VIEWING THE LIVE SESSIONS. CLOSE TO 11,000 VIEWED THE SESSIONS ONLINE DURING THE YEAR. 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. QUESTIONAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SUREILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,416 FAMILIES HAVE COMPLETED QUESTIONNAIRES. THIS ENABLES FAMILIES TO DOCUMENT THEIR LOVED ONE'S CASE AND PROVIDES ANNOYMOUS DATA FOR DOCTORS AND SCIENTISTS ON PATTERNS OF SYMPTOMS, DISEASE ONSEST AND DURATION, AND MORE RESULTS ARE COMPLIED THORUGHOUT THE YEAR AND SHARED ANNUALLY AT THE CJD FOUNDATION FAMILY CONFERENCE. SUPPORT GROUPS, WEBINARS AND SPEAKER SERIES: WE HOSTED 30 TELECONFERENCE SUPPORT GROUPS IN 2022. 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
FORM 990, PAGE 2, PART III, LINE 4DADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS.
FORM 990, PAGE 6, PART VI, LINE 2STUART YAFFA JEFFREY YAFFA TREASURER BOARD MEMBER FAMILY
FORM 990, PAGE 6, PART VI, 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, PAGE 6, PART VI, LINE 12CTHE CONFLICT OF INTEREST POLICY IS ENFORCED BY THE BOARD AND BOARD MEMBERS WHO ARE REQUIRED TO DISCLOSE KNOWN CONFLICTS.
FORM 990, PAGE 6, PART VI, 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, PAGE 6, PART VI, LINE 19THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS AND FINANCIAL STATEMENTS AVAILABLE UPON REQUEST.
FORM 990, PART XI, LINE 9STRIDES FOR CJD EXPENSE 61,575 STRIDES FOR CJD EXPENSE -61,575

Averaging Attachment AveragingAttachment

FieldValueIRS element (for citing)
ExplanationORGANIZATION MADE ITS 501(H) ELECTION IN 2019.ExplanationTxt

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