CREUTZFELDT-JAKOB DISEASE FOUNDATION INC: Form 990, tax year 2017

View the entire original 990 at ProPublica ↗

Organization
CREUTZFELDT-JAKOB DISEASE FOUNDATION INC (EIN 65-0404623)
Tax period
2017-01-01 to 2017-12-31
Filed
2018-10-26
IRS object ID
201812999349300036
Schema version
2017v2.3
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)
Return2018-10-26T11:48:48-04:00ReturnTs
Tax Period End2017-12-31TaxPeriodEndDt

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 Line1525 N CLEVELAND MASSILLON RD STE 10AddressLine1Txt
CityAKRONCityNm
State AbbreviationOHStateAbbreviationCd
ZIP443333332ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2017-01-01TaxPeriodBeginDt

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 Line13610 W MARKET ST SUITE 110AddressLine1Txt
CityAKRONCityNm
State AbbreviationOHStateAbbreviationCd
ZIP44333ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonDEBORAH YOBSPersonNm
Person TitlePRESIDENTPersonTitleTxt
Phone2127195900PhoneNum
Signature2018-11-15SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonKEVIN K CRUMPreparerPersonNm
PTINP00255436PTIN
Phone3308671222PhoneNum
Preparation2018-10-19PreparationDt

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address98.103.23.93IPv4AddressTxt
FieldValueIRS element (for citing)
IP2018-10-26IPDt
IP Tm10:48:48IPTm
IP TimezoneCDIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id223CB5FFAF71AA1FAA84BF7F051B24F13364AEE4AtSubmissionCreationDeviceId
At Submission Filing Device Id7F10500C6AA2DB0BB4B0E4862A6B16FAF8B2CC02AtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2017TaxYr
Build TS2018-06-14 16:35:46ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerDEBORAH YOBSPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line13610 W MARKET ST SUITE 110AddressLine1Txt
CityAKRONCityNm
State AbbreviationOHStateAbbreviationCd
ZIP44333ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$1,140,527GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.CJDFOUNDATION.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1993FormationYr
Legal Domicile StateFLLegalDomicileStateCd
Activity Or MissionTO PROMOTE RESEARCH, EDUCATION, AWARENESS, PATIENT AND FAMILY SUPPORT SERVICES, AND OTHER CHARITABLE PROGRAMS REGARDING PRION DISEASES INCLUDING CREUTZFELDT-JAKOB DISEASE.ActivityOrMissionDesc
Voting Members Governing Body20VotingMembersGoverningBodyCnt
Voting Members Independent20VotingMembersIndependentCnt
Total Employee6TotalEmployeeCnt
Total Volunteers160TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$910,074PYContributionsGrantsAmt
CY Contributions Grants$844,528CYContributionsGrantsAmt
PY Program Service Revenue$48,101PYProgramServiceRevenueAmt
CY Program Service Revenue$53,859CYProgramServiceRevenueAmt
PY Investment Income$12,730PYInvestmentIncomeAmt
CY Investment Income$6,686CYInvestmentIncomeAmt
PY Other Revenue$71,458PYOtherRevenueAmt
CY Other Revenue$127,700CYOtherRevenueAmt
PY Total Revenue$1,042,363PYTotalRevenueAmt
CY Total Revenue$1,032,773CYTotalRevenueAmt
PY Grants And Similar Paid$204,000PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$195,000CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$271,261PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$255,221CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$67,542CYTotalFundraisingExpenseAmt
PY Other Expenses$340,824PYOtherExpensesAmt
CY Other Expenses$312,540CYOtherExpensesAmt
PY Total Expenses$816,085PYTotalExpensesAmt
CY Total Expenses$762,761CYTotalExpensesAmt
PY Revenues Less Expenses$226,278PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$270,012CYRevenuesLessExpensesAmt
Total Assets BOY$1,045,907TotalAssetsBOYAmt
Total Assets EOY$1,312,484TotalAssetsEOYAmt
Total Liabilities BOY$29,373TotalLiabilitiesBOYAmt
Total Liabilities EOY$22,745TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$1,016,534NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$1,289,739NetAssetsOrFundBalancesEOYAmt
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, AND SUPPORT MEDICAL EDUCATION AND 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, AND FUNERAL PROFESSIONALS -ADVOCACY WITH POLITICAL REPRESENTATIVES 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 -COMMMissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$304,021ExpenseAmt
Revenue$53,859RevenueAmt
DescFAMILY SUPPORT AND OTHER PROGRAMS THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS AND SPEAKER SERIES. HELPLINE SUPPORT: THE CJD FOUNDATION RESPONDED TO MORE THAN 1,800 CALLS AND EMAILS IN 2017, 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 65 FAMILIES AND HOSPICE PROVIDERS. FAMILY CONFERENCE: MORE THAN 120 FAMILY MEMBERS AND 38 PRION DISEASE EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2017. CONFERENCE SESSIONS INCLUDE FAMILY SUPPORT WORKSHOPS, RESEARCH UPDATES, AND INFORMATION ON SURVEILLANCE, TREATMENT, AND EARLY DIAGNOSIS OF CJD. THE CONFERENCE FACILITATES DIALOGUE BETWEEN PROFESSIONALS AND FAMILY MEMBERS AND ENABLES RESEARCHERS TO CONNECT AND COLLABORATE WITH PEERS. QUESTIONNAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SURVEILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,300 FAMILIES HAVE COMPLETED QUESTIONNAIRES. THIS ENABLES FAMILIES TO DOCUMENT THEIR LOVED ONE'S CASE AND PROVIDES ANONYMOUS DATA FOR DOCTORS AND SCIENTISTS ON PATTERNS OF SYMPTOMS, DISEASE ONSET AND DURATION, AND MORE. RESULTS ARE COMPILED THROUGHOUT THE YEAR AND SHARED ANNUALLY AT THE CJD FOUNDATION FAMILY CONFERENCE. FAMILY WORKSHOPS AND SUPPORT GROUPS: IN 2017, THE CJD FOUNDATION HOSTED 10 SUPPORT GROUP SESSIONS IN NEW YORK CITY, AS WELL AS HOSTING FAMILY WORKSHOPS IN 5 CITIES. FAMILY WORKSHOPS, FACILITATED BY A CJD FOUNDATION STAFF MEMBER AND A MEDICAL DOCTOR, HELP CONNECT FAMILIES, AND ENABLE THEM TO ASK QUESTIONS ABOUT THE DISEASE, CAREGIVING, AND PROGRESS IN MEDICINE AND SCIENCE. TELECONFERENCE SUPPORT GROUPS AND SPEAKER SERIES: WE HOSTED 12 TELECONFERENCE SUPPORT GROUPS IN 2017 WITH AN AVERAGE OF 30 FAMILY MEMBERS PER CALL. EACH CALL WAS HOSTED BY A PRION DISEASE EXPERT, AND SEVERAL FEATURED INTERVIEWS WITH A GUEST SPEAKER. 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$232,663ExpenseAmt
Grant$195,000GrantAmt
DescRESEARCH GRANTS IN 2017, THE CJD FOUNDATION AWARDED 195,000 IN GRANTS TO 5 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 47 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE IN WASHINGTON, DC. THE CJD FOUNDATION HAS AWARDED MORE THAN 35 RESEARCH GRANTS OVER THE PAST 10 YEARS, 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$57,375ExpenseAmt
DescMEDICAL EDUCATION PROGRAMS THE 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 2016, WE PROVIDED MEDICAL EDUCATION PROGRAMS TO HOSPITALS IN ALABAMA, OHIO, NEW YORK, MICHIGAN, TEXAS, SOUTH CAROLINA, AND PENNSYLVANIA. FUNERAL AND INFECTION CONTROL EDUCATION WAS ALSO PROVIDED IN ALABAMA AND OHIO.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
DescADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS AND FAMILY DISCRETIONARY FUNDDesc
FieldValueIRS element (for citing)
Total Program Service Expenses$594,059TotalProgramServiceExpensesAmt
Described In Section501c3Yes (true)DescribedInSection501c3Ind
Schedule B RequiredYes (true)ScheduleBRequiredInd
Political Campaign ActyfalsePoliticalCampaignActyInd
Lobbying ActivitiesfalseLobbyingActivitiesInd
Subject To Proxy TaxfalseSubjectToProxyTaxInd
Donor Advised FundfalseDonorAdvisedFundInd
Conservation EasementsfalseConservationEasementsInd
Collections Of ArtfalseCollectionsOfArtInd
Credit CounselingfalseCreditCounselingInd
Temp Or Permanent EndowmentsfalseTempOrPermanentEndowmentsInd
Report Land Building EquipmentYes (true)ReportLandBuildingEquipmentInd
Report Investments Other SecfalseReportInvestmentsOtherSecInd
Report Program Related InvstfalseReportProgramRelatedInvstInd
Report Other AssetsfalseReportOtherAssetsInd
Report Other LiabilitiesYes (true)ReportOtherLiabilitiesInd
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 With Officer EntfalseBusinessRlnWithOfficerEntInd
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 Document8IRPDocumentCnt
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
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 DocumentsYes (true)ChangeToOrgDocumentsInd
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
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 Line13610 W MARKET STREET SUITE 110AddressLine1Txt
CityAKRONCityNm
State AbbreviationOHStateAbbreviationCd
ZIP44333ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (21 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmt
STUART YAFFA
TREASURER5.00Yes (X)Yes (X)$0$0$0
BOB KASSAI
BOARD MEMBER2.00Yes (X)$0$0$0
MAYRA LICHTER
CHAIRMAN2.00Yes (X)Yes (X)$0$0$0
JEFFREY YAFFA
BOARD MEMBER2.00Yes (X)$0$0$0
DEANA SIMPSON
BOARD MEMBER2.00Yes (X)$0$0$0
VERONICA OBERDORF
BOARD MEMBER2.00Yes (X)$0$0$0
MARIE KASSAI
BOARD MEMBER2.00Yes (X)$0$0$0
AMANDA BAXLEY KALINSKY
BOARD MEMBER2.00Yes (X)$0$0$0
CHARLES CASH
SECRETARY5.00Yes (X)Yes (X)$0$0$0
MICHAEL VITANZA
BOARD MEMBER2.00Yes (X)$0$0$0
MARIA THACKER-GOETHE
BOARD MEMBER2.00Yes (X)$0$0$0
JIRI SAFAR
BOARD MEMBER2.00Yes (X)$0$0$0
JANINE KOCK
BOARD MEMBER2.00Yes (X)$0$0$0
JAY LEVY
BOARD MEMBER2.00Yes (X)$0$0$0
CAROL MITTS
BOARD MEMBER2.00Yes (X)$0$0$0
MOLLY NOCERINO
BOARD MEMBER2.00Yes (X)$0$0$0
BRIAN APPLEBY
BOARD MEMBER2.00Yes (X)$0$0$0
PAMELA FEAR
BOARD MEMBER2.00Yes (X)$0$0$0
CORBY W FOSTER
BOARD MEMBER2.00Yes (X)$0$0$0
HATTE BLEJER
BOARD MEMBER2.00Yes (X)$0$0$0
DEBORAH YOBS
PRESIDENT40.00Yes (X)$111,457$0$0
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$130,735FundraisingAmt
Government Grants$11,269GovernmentGrantsAmt
All Other Contributions$702,524AllOtherContributionsAmt
Total Contributions$844,528TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescCONFERENCE INCOMEDesc
Business541900BusinessCd
Total Revenue Column$53,859TotalRevenueColumnAmt
Related Or Exempt Func Income$53,859RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$53,859TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$6,686TotalRevenueColumnAmt
Exclusion$6,686ExclusionAmt

Gross Rents GrossRentsGrp

FieldValueIRS element (for citing)
Real$76,677RealAmt

Less Rental Expenses LessRentalExpensesGrp

FieldValueIRS element (for citing)
Real$76,529RealAmt

Rental Income Or Loss RentalIncomeOrLossGrp

FieldValueIRS element (for citing)
Real$148RealAmt

Net Rental Income Or Loss NetRentalIncomeOrLossGrp

FieldValueIRS element (for citing)
Total Revenue Column$148TotalRevenueColumnAmt
Exclusion$148ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$150,268FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$130,735ContriRptFundraisingEventAmt
Fundraising Direct Expenses$31,225FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$119,043TotalRevenueColumnAmt
Exclusion$119,043ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescMISCELLANEOUSDesc
Business541900BusinessCd
Total Revenue Column$8,509TotalRevenueColumnAmt
Exclusion$8,509ExclusionAmt
FieldValueIRS element (for citing)
Other Revenue Total$8,509OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,032,773TotalRevenueColumnAmt
Related Or Exempt Func Income$53,859RelatedOrExemptFuncIncomeAmt
Exclusion$134,386ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$100,000TotalAmt
Program Services$100,000ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$95,000TotalAmt
Program Services$95,000ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$111,457TotalAmt
Program Services$80,249ProgramServicesAmt
Management And General$18,948ManagementAndGeneralAmt
Fundraising$12,260FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$125,577TotalAmt
Program Services$91,556ProgramServicesAmt
Management And General$20,580ManagementAndGeneralAmt
Fundraising$13,441FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$18,187TotalAmt
Program Services$12,224ProgramServicesAmt
Management And General$3,743ManagementAndGeneralAmt
Fundraising$2,220FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$12,144TotalAmt
Management And General$12,144ManagementAndGeneralAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$12,814TotalAmt
Program Services$7,159ProgramServicesAmt
Management And General$4,302ManagementAndGeneralAmt
Fundraising$1,353FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$13,441TotalAmt
Program Services$7,968ProgramServicesAmt
Management And General$3,457ManagementAndGeneralAmt
Fundraising$2,016FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$5,444TotalAmt
Management And General$5,444ManagementAndGeneralAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$2,373TotalAmt
Program Services$1,407ProgramServicesAmt
Management And General$610ManagementAndGeneralAmt
Fundraising$356FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$2,629TotalAmt
Program Services$1,559ProgramServicesAmt
Management And General$676ManagementAndGeneralAmt
Fundraising$394FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
FAMILY CONFERENCE$123,307$123,307
CONTRACT LABOR$51,083$27,182$15,782$8,119
PROGRAM EXPENSE$27,107$25,379$1,728
FAMILY FUNDRAISING$7,817$7,817

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$54,381TotalAmt
Program Services$21,069ProgramServicesAmt
Management And General$13,746ManagementAndGeneralAmt
Fundraising$19,566FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$762,761TotalAmt
Program Services$594,059ProgramServicesAmt
Management And General$101,160ManagementAndGeneralAmt
Fundraising$67,542FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$206BOYAmt
EOY$169EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$498,647BOYAmt
EOY$662,425EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$68,662BOYAmt
EOY$17,270EOYAmt

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

FieldValueIRS element (for citing)
BOY$2,084BOYAmt
EOY$3,296EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
EOY$4,849EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$35,470LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$26,109LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$9,734BOYAmt
EOY$9,361EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$445,731BOYAmt
EOY$594,271EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$20,843BOYAmt
EOY$20,843EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$1,045,907BOYAmt
EOY$1,312,484EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$11,180BOYAmt
EOY$4,554EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$18,193BOYAmt
EOY$18,191EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$29,373BOYAmt
EOY$22,745EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$788,603BOYAmt
EOY$979,739EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$227,931BOYAmt
EOY$310,000EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,016,534BOYAmt
EOY$1,289,739EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,045,907BOYAmt
EOY$1,312,484EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$270,012ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$3,193NetUnrlzdGainsLossesInvstAmt
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$619,472CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$626,556CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$625,651CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$910,074CurrentTaxYearMinus1YearAmt
Current Tax Year$844,528CurrentTaxYearAmt
Total$3,626,281TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$619,472CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$626,556CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$625,651CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$910,074CurrentTaxYearMinus1YearAmt
Current Tax Year$844,528CurrentTaxYearAmt
Total$3,626,281TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$55,457SubstantialContributorsTotAmt
Public Support Total170$3,570,824PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$5,722CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$20,323CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$14,850CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$12,730CurrentTaxYearMinus1YearAmt
Current Tax Year$6,686CurrentTaxYearAmt
Total$60,311TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus2 Years$27,731CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$68,342CurrentTaxYearMinus1YearAmt
Current Tax Year$126,700CurrentTaxYearAmt
Total$222,773TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,054CurrentTaxYearMinus4YearsAmt
Total$1,054TotalAmt
FieldValueIRS element (for citing)
Total Support$3,910,419TotalSupportAmt
Gross Receipts Rltd Activities$53,859GrossReceiptsRltdActivitiesAmt
Public Support CY1700.91320PublicSupportCY170Pct
Public Support PY1700.90280PublicSupportPY170Pct
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 1,054ExplanationTxt

Schedule B IRS990ScheduleB

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$35,470OtherCostOrOtherBasisAmt
Depreciation$26,109DepreciationAmt
Book Value$9,361BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$9,361TotalBookValueLandBuildingsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescTENANT SECURITY DEPOSITDesc
Amt$18,191Amt
FieldValueIRS element (for citing)
Total Liability$18,191TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$1,071,427TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$3,193NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$4,236DonatedServicesAndUseFcltsAmt
Other Revenue$31,225OtherRevenueAmt
Revenue Not Reported$38,654RevenueNotReportedAmt
Revenue Subtotal$1,032,773RevenueSubtotalAmt
Total Revenue Per Form990$1,032,773TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$798,222TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$4,236DonatedServicesUseFcltsAmt
Other Expenses Included$31,225OtherExpensesIncludedAmt
Expenses Not Reported$35,461ExpensesNotReportedAmt
Expenses Subtotal$762,761ExpensesSubtotalAmt
Total Expenses Per Form990$762,761TotalExpensesPerForm990Amt

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 31,225
SCHEDULE D, PAGE 4, PART XII, LINE 2DSTRIDES FOR CJD EXPENSE 31,225

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)

RegionRegionTxtType Of Activities ConductedTypeOfActivitiesConductedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
FRANCEGRANTS TO RECIPIENTS$50,000
ITALYGRANTS TO RECIPIENTS$45,000
FieldValueIRS element (for citing)
Subtotal Spent$95,000SubtotalSpentAmt
Total Spent$95,000TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)

Purpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
CJD RESEARCH$50,000CHECK
CJD RESEARCH$45,000CHECK
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 PROVIDED AT THE FAMILY CONFERENCE.
SCHEDULE F, PAGE 1, PART I, LINE 3FRANCE 50,000 0 ITALY 45,000 0

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1STRIDES FOR CJDEvent1Nm
Gross Receipts Event1$218,998GrossReceiptsEvent1Amt
Charitable Contri Event1$130,735CharitableContriEvent1Amt
Gross Revenue Event1$88,263GrossRevenueEvent1Amt
Other Direct Expenses Event1$31,225OtherDirectExpensesEvent1Amt
Gross Receipts Total$218,998GrossReceiptsTotalAmt
Charitable Contributions Tot$130,735CharitableContributionsTotAmt
Gross Revenue Total Events$88,263GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$31,225OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$31,225DirectExpenseSummaryEventsAmt
Net Income Summary$57,038NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (2 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
UNIVERSITY OF TEXAS HEALTH SCIENCE
PO BOX 301418DALLASTX75303741761309501C3$50,000CJD RESEARCH
CASE WESTERN RESERVE UNIVERSITY
10900 EUCLID AVECLEVELANDOH44106341018992501C3$50,000CJD RESEARCH

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceSCHEDULE I, PAGE 1, PART I, LINE 2FormAndLineReferenceDesc
ExplanationTHE ORGANIZATION RECEIVES RESEARCH PROPOSALS THAT INCLUDE A RESEARCH BUDGET. GRANTS ARE MONITORED THROUGHOUT THE RESEARCH PROJECTS BY VARIOUS MEANS, INCLUDING UPDATES AT THE FAMILY CONFERENCE.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (11 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, AND SUPPORT MEDICAL EDUCATION AND 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, AND FUNERAL PROFESSIONALS -ADVOCACY WITH POLITICAL REPRESENTATIVES 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 NEWSLETTER, SOCIAL MEDIA, EMAILS, AND FAMILY TELECONFERENCES -RESEARCH GRANT PROGRAM, WITH 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, 160 CONTRIBUTED OVER 5,500 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 4AEXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2017. CONFERENCE SESSIONS INCLUDE FAMILY SUPPORT WORKSHOPS, RESEARCH UPDATES, AND INFORMATION ON SURVEILLANCE, TREATMENT, AND EARLY DIAGNOSIS OF CJD. THE CONFERENCE FACILITATES DIALOGUE BETWEEN PROFESSIONALS AND FAMILY MEMBERS AND ENABLES RESEARCHERS TO CONNECT AND COLLABORATE WITH PEERS. QUESTIONNAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SURVEILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,300 FAMILIES HAVE COMPLETED QUESTIONNAIRES. THIS ENABLES FAMILIES TO DOCUMENT THEIR LOVED ONE'S CASE AND PROVIDES ANONYMOUS DATA FOR DOCTORS AND SCIENTISTS ON PATTERNS OF SYMPTOMS, DISEASE ONSET AND DURATION, AND MORE. RESULTS ARE COMPILED THROUGHOUT THE YEAR AND SHARED ANNUALLY AT THE CJD FOUNDATION FAMILY CONFERENCE. FAMILY WORKSHOPS AND SUPPORT GROUPS: IN 2017, THE CJD FOUNDATION HOSTED 10 SUPPORT GROUP SESSIONS IN NEW YORK CITY, AS WELL AS HOSTING FAMILY WORKSHOPS IN 5 CITIES. FAMILY WORKSHOPS, FACILITATED BY A CJD FOUNDATION STAFF MEMBER AND A MEDICAL DOCTOR, HELP CONNECT FAMILIES, AND ENABLE THEM TO ASK QUESTIONS ABOUT THE DISEASE, CAREGIVING, AND PROGRESS IN MEDICINE AND SCIENCE. TELECONFERENCE SUPPORT GROUPS AND SPEAKER SERIES: WE HOSTED 12 TELECONFERENCE SUPPORT GROUPS IN 2017 WITH AN AVERAGE OF 30 FAMILY MEMBERS PER CALL. EACH CALL WAS HOSTED BY A PRION DISEASE EXPERT, AND SEVERAL FEATURED INTERVIEWS WITH A GUEST SPEAKER. 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 AND FAMILY DISCRETIONARY FUND
FORM 990, PAGE 6, PART VI, LINE 2BOB KASSAI MARIE KASSAI FAMILY STUART YAFFA JEFFREY YAFFA FAMILY
FORM 990, PAGE 6, PART VI, LINE 4ON JULY 14, 2017, THE CJDF CHANGED THE NAME OF EXECUTIVE DIRECTOR TO PRESIDENT/EXECUTIVE DIRECTOR. ON JULY 14, 2017, THE CJDF ELIMINATED THE PROVISION ALLOWING A PERSON TO HOLD MORE THAN ONE OFFICE. MEMBERSHIP- BYLAWS ARTICLE VI ON MEMBERSHIP HAS BEEN ELIMINATED; THE CJDF HAS NO FORMAL MEMBERS. OPERATIONS- REGARDING EXECUTION OF DOCUMENTS, ON JULY 14, 2017, THE CJDF AMENDED THE BYLAW WHICH PREVIOUSLY REQUIRED CHECKS TO BE SIGNED BY THE TREASURER OR EXECUTIVE DIRECTOR, TO NOW REQUIRE THAT CHECKS BE SIGNED BY AT LEAST ONE OF THE FOLLOWING: PRESIDENT/EXECUTIVE DIRECTOR, TREASURER, SECRETARY, OR PROGRAM DIRECTOR. GOVERNANCE AND OVERSIGHT - THE QUORUM FOR BOARD VOTING WAS CHANGED FROM A MINIMUM OF 5 TO 11 MEMBERS. ONLY ONE, RATHER THAN TWO, OF THE THREE YEARLY BOARD MEETINGS REQUIRES FACE-TO-FACE PARTICIPATION. THE AMENDMENTS ELIMINATED THE PROVISION ALLOWING NOT MORE THAN 1 OR 10%, WHICHEVER IS GREATER, OF COMPENSATED PERSONS TO SERVE ON THE BOARD, AND PROHIBITING COMPENSATED MEMBERS FROM SERVING AS CHAIRPERSON OR TREASURER. THE NEW PROVISION ALLOWS ONLY THE PRESIDENT/EXECUTIVE DIRECTOR TO RECEIVE A SALARY AND PERMITS REIMBURSEMENT FOR EXPENSES OR SPECIFIC PROGRAMS FOR OTHER BOARD MEMBERS. OTHER COMPENSATION TO A BOARD MEMBER REQUIRES APPROVAL BY A MAJORITY OF THE BOARD. CONFLICT OF INTEREST POLICY NOW SPECIFICALLY REFERS TO NOT ONLY MATERIAL, BUT ALSO UNDISCLOSED, CONFLICTS. THE NEW PROVISION ALSO PROVIDES THAT BOARD MEMBERS WILL REVIEW A SEPARATE CONFLICT OF INTEREST STATEMENT AND SIGN A CONFLICT OF INTEREST STATEMENT ANNUALLY. FINANCIAL EXPECTATIONS - THE CONTRIBUTION OF BOARD MEMBERS CAN NOW BE IN THE FORM OF WEALTH, WISDOM AND/OR WORK, AS OPPOSED TO ALL THREE FORMS PREVIOUSLY REFERENCED. BOARD MEMBERS SHOULD CONTRIBUTE FINANCIALLY AND/OR RAISE FUNDS, AS OPPOSED TO THE PREVIOUS PROVISION EXPECTING THEM TO CONTRIBUTE AND RAISE FUNDS. COMMITTEES - THE PREVIOUS STANDARDS LISTED THE FOLLOWING RECOMMENDED STANDING COMMITTEES: EXECUTIVE COMMITTEE, DEVELOPMENT COMMITTEE, ADMINISTRATION, BUDGET AND FINANCE COMMITTEE, AND DIRECTORSHIP COMMITTEE. THE NEW PROVISIONS CURRENTLY PROVIDE FOR THE FOLLOWING RECOMMENDED STANDING COMMITTEES: COMMITTEE ON GOVERNANCE, FINANCE COMMITTEE, FUNDRAISING COMMITTEE, GRANTS COMMITTEE, SCIENTIFIC ADVISORY COMMITTEE.
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 31,225 STRIDES FOR CJD EXPENSE -31,225

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