CREUTZFELDT-JAKOB DISEASE FOUNDATION INC: Form 990, tax year 2018

View the entire original 990 at ProPublica ↗

Organization
CREUTZFELDT-JAKOB DISEASE FOUNDATION INC (EIN 65-0404623)
Tax period
2018-01-01 to 2018-12-31
Filed
2019-11-11
IRS object ID
201933159349300028
Schema version
2018v3.1
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)
Return2019-11-11T07:58:24-06:00ReturnTs
Tax Period End2018-12-31TaxPeriodEndDt

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 Begin2018-01-01TaxPeriodBeginDt

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
Signature2019-11-01SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonKEVIN K CRUMPreparerPersonNm
PTINP00255436PTIN
Phone3308671222PhoneNum
Preparation2019-10-10PreparationDt

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address96.11.126.226IPv4AddressTxt
FieldValueIRS element (for citing)
IP2019-11-11IPDt
IP Tm07:58:24IPTm
IP TimezoneCSIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id223CB5FFAF71AA1FAA84BF7F051B24F13364AEE4AtSubmissionCreationDeviceId
At Submission Filing Device Id0733849F1BF7A2E56DEABDE3D91996E8548A4B35AtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2018TaxYr
Build TS2020-01-14 16:20:31ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Address ChangeYes (X)AddressChangeInd
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$2,127,245GrossReceiptsAmt
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 Body23VotingMembersGoverningBodyCnt
Voting Members Independent23VotingMembersIndependentCnt
Total Employee5TotalEmployeeCnt
Total Volunteers160TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$844,528PYContributionsGrantsAmt
CY Contributions Grants$1,511,893CYContributionsGrantsAmt
PY Program Service Revenue$53,859PYProgramServiceRevenueAmt
CY Program Service Revenue$30,535CYProgramServiceRevenueAmt
PY Investment Income$6,686PYInvestmentIncomeAmt
CY Investment Income-$3,452CYInvestmentIncomeAmt
PY Other Revenue$127,700PYOtherRevenueAmt
CY Other Revenue$59,264CYOtherRevenueAmt
PY Total Revenue$1,032,773PYTotalRevenueAmt
CY Total Revenue$1,598,240CYTotalRevenueAmt
PY Grants And Similar Paid$195,000PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$287,300CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$255,221PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$301,849CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$63,883CYTotalFundraisingExpenseAmt
PY Other Expenses$312,540PYOtherExpensesAmt
CY Other Expenses$285,599CYOtherExpensesAmt
PY Total Expenses$762,761PYTotalExpensesAmt
CY Total Expenses$874,748CYTotalExpensesAmt
PY Revenues Less Expenses$270,012PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$723,492CYRevenuesLessExpensesAmt
Total Assets BOY$1,312,484TotalAssetsBOYAmt
Total Assets EOY$2,020,582TotalAssetsEOYAmt
Total Liabilities BOY$22,745TotalLiabilitiesBOYAmt
Total Liabilities EOY$11,550TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$1,289,739NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$2,009,032NetAssetsOrFundBalancesEOYAmt
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, 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 -COMissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$298,918ExpenseAmt
Revenue$30,535RevenueAmt
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 2,200 CALLS AND EMAILS IN 2018, 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 69 FAMILIES AND HOSPICE PROVIDERS. FAMILY CONFERENCE: MORE THAN 150 FAMILY MEMBERS AND 33 PRION DISEASE EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2018. 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 1,350 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 2018, 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 14 TELECONFERENCE SUPPORT GROUPS IN 2018 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$309,927ExpenseAmt
Grant$287,300GrantAmt
DescRESEARCH GRANTS IN 2018, THE CJD FOUNDATION AWARDED 287,300 IN GRANTS TO 6 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 35 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 42 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$49,270ExpenseAmt
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 2018, WE PROVIDED MEDICAL EDUCATION PROGRAMS TO HOSPITALS IN ALABAMA, NEW YORK, KENTUCKY, AND PENNSYLVANIA. FUNERAL AND INFECTION CONTROL EDUCATION WAS ALSO PROVIDED IN ST. LOUIS.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$47,230ExpenseAmt
DescADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$47,230TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$705,345TotalProgramServiceExpensesAmt
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 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 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 Document7IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee5EmployeeCnt
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 Members23GoverningBodyVotingMembersCnt
Independent Voting Member23IndependentVotingMemberCnt
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
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 (24 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
PATRICIA MCGILL
BOARD MEMBER2.00Yes (X)$0$0$0
TIM SCHWISTER
BOARD MEMBER2.00Yes (X)$0$0$0
TREVOR BAIERL
BOARD MEMBER2.00Yes (X)$0$0$0
DEBORAH YOBS
PRESIDENT/EX40.00Yes (X)$111,227$0$689
FieldValueIRS element (for citing)
Total Reportable Comp From Org$111,227TotalReportableCompFromOrgAmt
Total Other Compensation$689TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KfalseTotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
Fundraising$318,148FundraisingAmt
Government Grants$66,737GovernmentGrantsAmt
All Other Contributions$1,127,008AllOtherContributionsAmt
Total Contributions$1,511,893TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescCONFERENCE INCOMEDesc
Business541900BusinessCd
Total Revenue Column$30,535TotalRevenueColumnAmt
Related Or Exempt Func Income$30,535RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$30,535TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$7,808TotalRevenueColumnAmt
Exclusion$7,808ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$468,894SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$480,154SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$11,260SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$11,260TotalRevenueColumnAmt
Exclusion-$11,260ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$78,985FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$318,148ContriRptFundraisingEventAmt
Fundraising Direct Expenses$45,484FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$33,501TotalRevenueColumnAmt
Exclusion$33,501ExclusionAmt
FieldValueIRS element (for citing)
Gross Sales Of Inventory$9,813GrossSalesOfInventoryAmt
Cost Of Goods Sold$3,367CostOfGoodsSoldAmt

Net Income Or Loss NetIncomeOrLossGrp

FieldValueIRS element (for citing)
Total Revenue Column$6,446TotalRevenueColumnAmt
Related Or Exempt Func Income$6,446RelatedOrExemptFuncIncomeAmt

Other Revenue Misc OtherRevenueMiscGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtExclusionExclusionAmt
MISCELLANEOUS541900$16,351$16,351
REWARDS541900$2,966$2,966
FieldValueIRS element (for citing)
Other Revenue Total$19,317OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,598,240TotalRevenueColumnAmt
Related Or Exempt Func Income$36,981RelatedOrExemptFuncIncomeAmt
Exclusion$49,366ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$150,000TotalAmt
Program Services$150,000ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$137,300TotalAmt
Program Services$137,300ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$111,916TotalAmt
Program Services$76,764ProgramServicesAmt
Management And General$20,693ManagementAndGeneralAmt
Fundraising$14,459FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$164,577TotalAmt
Program Services$112,884ProgramServicesAmt
Management And General$30,423ManagementAndGeneralAmt
Fundraising$21,270FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$25,356TotalAmt
Program Services$17,392ProgramServicesAmt
Management And General$4,686ManagementAndGeneralAmt
Fundraising$3,278FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$11,531TotalAmt
Management And General$11,531ManagementAndGeneralAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$1,510TotalAmt
Management And General$1,510ManagementAndGeneralAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$2,357TotalAmt
Management And General$2,357ManagementAndGeneralAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$18,921TotalAmt
Program Services$13,055ProgramServicesAmt
Management And General$3,406ManagementAndGeneralAmt
Fundraising$2,460FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$1,584TotalAmt
Management And General$1,584ManagementAndGeneralAmt

Interest InterestGrp

FieldValueIRS element (for citing)
Total$21TotalAmt
Management And General$21ManagementAndGeneralAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$2,552TotalAmt
Management And General$2,552ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$3,690TotalAmt
Management And General$3,690ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmt
FAMILY CONFERENCE$135,729$135,729
PROGRAM EXPENSE$34,195$32,865$1,330
WEBSITE & DATABASE$13,698$13,698
DONATION COLLECTION FEES$12,299$6,150$6,149

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$47,512TotalAmt
Program Services$10,064ProgramServicesAmt
Management And General$15,032ManagementAndGeneralAmt
Fundraising$22,416FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$874,748TotalAmt
Program Services$705,901ProgramServicesAmt
Management And General$104,964ManagementAndGeneralAmt
Fundraising$63,883FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$169BOYAmt
EOY$208EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$662,425BOYAmt
EOY$1,158,165EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$17,270BOYAmt
EOY$59,713EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
EOY$1,077EOYAmt

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

FieldValueIRS element (for citing)
BOY$3,296BOYAmt
EOY$3,970EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$4,849BOYAmt
EOY$3,382EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$35,470LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$28,661LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$9,361BOYAmt
EOY$6,809EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$594,271BOYAmt
EOY$785,525EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$20,843BOYAmt
EOY$1,733EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$1,312,484BOYAmt
EOY$2,020,582EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$4,554BOYAmt
EOY$11,550EOYAmt

Other Liabilities OtherLiabilitiesGrp

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

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$22,745BOYAmt
EOY$11,550EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$979,739BOYAmt
EOY$1,659,619EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$310,000BOYAmt
EOY$349,413EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,289,739BOYAmt
EOY$2,009,032EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,312,484BOYAmt
EOY$2,020,582EOYAmt
FieldValueIRS element (for citing)
Info In Schedule O Part XIYes (X)InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss$723,492ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$4,199NetUnrlzdGainsLossesInvstAmt
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$626,556CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$625,651CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$910,074CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$844,528CurrentTaxYearMinus1YearAmt
Current Tax Year$1,511,893CurrentTaxYearAmt
Total$4,518,702TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$626,556CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$625,651CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$910,074CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$844,528CurrentTaxYearMinus1YearAmt
Current Tax Year$1,511,893CurrentTaxYearAmt
Total$4,518,702TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$76,551SubstantialContributorsTotAmt
Public Support Total170$4,442,151PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$20,323CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$14,850CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$12,730CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$6,686CurrentTaxYearMinus1YearAmt
Current Tax Year$7,808CurrentTaxYearAmt
Total$62,397TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus3 Years$27,731CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$68,342CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$126,700CurrentTaxYearMinus1YearAmt
Current Tax Year$51,818CurrentTaxYearAmt
Total$274,591TotalAmt
FieldValueIRS element (for citing)
Total Support$4,855,690TotalSupportAmt
Gross Receipts Rltd Activities$94,207GrossReceiptsRltdActivitiesAmt
Public Support CY1700.91480PublicSupportCY170Pct
Public Support PY1700.91320PublicSupportPY170Pct
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

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$35,470OtherCostOrOtherBasisAmt
Depreciation$28,661DepreciationAmt
Book Value$6,809BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$6,809TotalBookValueLandBuildingsAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$1,647,440TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst-$4,199NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$4,548DonatedServicesAndUseFcltsAmt
Other Revenue$48,851OtherRevenueAmt
Revenue Not Reported$49,200RevenueNotReportedAmt
Revenue Subtotal$1,598,240RevenueSubtotalAmt
Total Revenue Per Form990$1,598,240TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$928,147TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$4,548DonatedServicesUseFcltsAmt
Other Expenses Included$48,851OtherExpensesIncludedAmt
Expenses Not Reported$53,399ExpensesNotReportedAmt
Expenses Subtotal$874,748ExpensesSubtotalAmt
Total Expenses Per Form990$874,748TotalExpensesPerForm990Amt

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 FOUNDATIONS 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 45,484 COST OF ITEMS SOLD 3,367
SCHEDULE D, PAGE 4, PART XII, LINE 2DSTRIDES FOR CJD EXPENSE 45,484 COST OF ITEMS SOLD 3,367

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)

RegionRegionTxtType Of Activities ConductedTypeOfActivitiesConductedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
FRANCEGRANTS TO RECIPIENTS$50,000
GERMANYGRANTS TO RECIPIENTS$39,300
CANADAGRANTS TO RECIPIENTS$48,000
FieldValueIRS element (for citing)
Subtotal Spent$137,300SubtotalSpentAmt
Total Spent$137,300TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)

Purpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
CJD RESEARCH$50,000WIRE TRANSFER
CJD RESEARCH$39,300WIRE TRANSFER
CJD RESEARCH$48,000WIRE 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 PROVIDED AT THE FAMILY CONFERENCE.
SCHEDULE F, PAGE 1, PART I, LINE 3FRANCE 50,000 0 GERMANY 39,300 0 CANADA 48,000 0

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1STRIDES FOR CJDEvent1Nm
Gross Receipts Event1$397,133GrossReceiptsEvent1Amt
Charitable Contri Event1$318,148CharitableContriEvent1Amt
Gross Revenue Event1$78,985GrossRevenueEvent1Amt
Other Direct Expenses Event1$45,484OtherDirectExpensesEvent1Amt
Gross Receipts Total$397,133GrossReceiptsTotalAmt
Charitable Contributions Tot$318,148CharitableContributionsTotAmt
Gross Revenue Total Events$78,985GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$45,484OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$45,484DirectExpenseSummaryEventsAmt
Net Income Summary$33,501NetIncomeSummaryAmt

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 GrantPurposeOfGrantTxtBusiness Name Line2RecipientBusinessName/BusinessNameLine2Txt
UNIVERSITY OF TEXAS HEALTH SCIENCE
PO BOX 301418DALLASTX75303741761309501C3$50,000CJD RESEARCH
TRUSTEE OF BOSTON UNIVERSITY GRANTS
PO BOX 28763NEW YORKNY10087042103547501C3$50,000CJD RESEARCH
NATIONAL INSTITUTE OF ALLERGY AND
5601 FISHERS LN STE 6D MSC 9804ROCKVILLEMD20852GOV$50,000CJD RESEARCHINFECTIOUS DISEASE

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 (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, 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 ANNUAL CONFERENCE, WEBSITE, 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 4AFAMILY 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 2,200 CALLS AND EMAILS IN 2018, 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 69 FAMILIES AND HOSPICE PROVIDERS. FAMILY CONFERENCE: MORE THAN 150 FAMILY MEMBERS AND 33 PRION DISEASE EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2018. 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 1,350 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 2018, 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 14 TELECONFERENCE SUPPORT GROUPS IN 2018 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.
FORM 990, PAGE 6, PART VI, LINE 2BOB KASSAI MARIE KASSAI FAMILY STUART YAFFA JEFFREY YAFFA 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 45,484 COST OF ITEMS SOLD 3,367 STRIDES FOR CJD EXPENSE -45,484 COST OF ITEMS SOLD -3,367

Comments

Anonymous: no account or email. Up to 2,000 characters, at most one link. Comments are checked automatically; some wait for review.