CREUTZFELDT-JAKOB DISEASE FOUNDATION INC: Form 990, tax year 2015
View the entire original 990 at ProPublica ↗
- Organization
- CREUTZFELDT-JAKOB DISEASE FOUNDATION INC (EIN 65-0404623)
- Tax period
- 2015-01-01 to 2015-12-31
- Filed
- 2016-11-15
- IRS object ID
- 201613209349312051
- Schema version
- 2015v2.1
- 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2016-11-15T14:37:41-06:00 | ReturnTs |
| Tax Period End | 2015-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 341897853 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CRUM & COMPANY | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 525 N CLEVELAND MASSILLON RD STE 10 | AddressLine1Txt |
| City | AKRON | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 443333332 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2015-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 650404623 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CREUTZFELDT-JAKOB DISEASE | BusinessNameLine1Txt |
| Business Name Line2 | FOUNDATION INC | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | CREU | BusinessNameControlTxt |
| Phone | 8006591991 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 3610 W MARKET ST SUITE 110 | AddressLine1Txt |
| City | AKRON | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 44333 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | DEBORAH YOBS | PersonNm |
| Person Title | PRESIDENT | PersonTitleTxt |
| Phone | 2127195900 | PhoneNum |
| Signature | 2016-10-25 | SignatureDt |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | KEVIN K CRUM | PreparerPersonNm |
| PTIN | P00255436 | PTIN |
| Phone | 3308671222 | PhoneNum |
| Preparation | 2016-11-15 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2015 | TaxYr |
| Build TS | 2017-02-10 21:41:12Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Change | Yes (X) | AddressChangeInd |
| Principal Officer | DEBORAH YOBS | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 3610 W MARKET ST SUITE 110 | AddressLine1Txt |
| City | AKRON | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 44333 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $747,972 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.CJDFOUNDATION.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1993 | FormationYr |
| Legal Domicile State | FL | LegalDomicileStateCd |
| Activity Or Mission | TO PROMOTE RESEARCH, EDUCATION, AWARENESS, PATIENT AND FAMILY SUPPORT SERVICES, AND OTHER CHARITABLE PROGRAMS REGARDING CREUTZFELDT-JAKOB DISEASE. | ActivityOrMissionDesc |
| Voting Members Governing Body | 20 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 20 | VotingMembersIndependentCnt |
| Total Employee | 5 | TotalEmployeeCnt |
| Total Volunteers | 69 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| PY Contributions Grants | $626,556 | PYContributionsGrantsAmt |
| CY Contributions Grants | $625,651 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $46,464 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $56,912 | CYProgramServiceRevenueAmt |
| PY Investment Income | $8,323 | PYInvestmentIncomeAmt |
| CY Investment Income | $1,395 | CYInvestmentIncomeAmt |
| PY Other Revenue | $2,968 | PYOtherRevenueAmt |
| CY Other Revenue | $43,898 | CYOtherRevenueAmt |
| PY Total Revenue | $684,311 | PYTotalRevenueAmt |
| CY Total Revenue | $727,856 | CYTotalRevenueAmt |
| CY Grants And Similar Paid | $250,000 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $254,733 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $269,635 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $80,944 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $332,425 | PYOtherExpensesAmt |
| CY Other Expenses | $299,582 | CYOtherExpensesAmt |
| PY Total Expenses | $587,158 | PYTotalExpensesAmt |
| CY Total Expenses | $819,217 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $97,153 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$91,361 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $891,868 | TotalAssetsBOYAmt |
| Total Assets EOY | $807,485 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $9,184 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $16,162 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $882,684 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $791,323 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | CREUTZFELDT-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 -COMM | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $251,870 | ExpenseAmt |
| Revenue | $58,624 | RevenueAmt |
| Desc | FAMILY SUPPORT AND OTHER PROGRAMS THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO SUPPORT 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 1,300 CALLS AND EMAILS IN 2015, 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 100 FAMILY MEMBERS AND 44 PRION DISEASE EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2015. 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 1200 FAMILIES HAVE COMPLETED QUESTIONNAIRES, INCLUDING 61 IN 2015. 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 2015, 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 16 TELECONFERENCE SUPPORT GROUPS IN 2015 WITH AN AVERAGE OF 25 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. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $250,130 | ExpenseAmt |
| Grant | $250,000 | GrantAmt |
| Desc | RESEARCH GRANTS IN 2015, THE CJD FOUNDATION AWARDED 250,000 IN GRANTS TO 5 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. MORE THAN 50 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 25 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $42,123 | ExpenseAmt |
| Desc | MEDICAL 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 2015, WE PROVIDED MEDICAL EDUCATION PROGRAMS TO HOSPITALS IN FLORIDA, NORTH CAROLINA (RALEIGH AND BUTNER), INDIANA, UTAH, NEW YORK, AND CLEVELAND. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $25,474 | ExpenseAmt |
| Desc | ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS AND FAMILY DISCRETIONARY FUND | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $25,474 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $569,597 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | false | LobbyingActivitiesInd |
| Subject To Proxy Tax | false | SubjectToProxyTaxInd |
| Donor Advised Fund | false | DonorAdvisedFundInd |
| Conservation Easements | false | ConservationEasementsInd |
| Collections Of Art | false | CollectionsOfArtInd |
| Credit Counseling | false | CreditCounselingInd |
| Temp Or Permanent Endowments | false | TempOrPermanentEndowmentsInd |
| Report Land Building Equipment | Yes (true) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | false | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | false | ReportProgramRelatedInvstInd |
| Report Other Assets | false | ReportOtherAssetsInd |
| Report Other Liabilities | false | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (true) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (true) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | false | ConsolidatedAuditFinclStmtInd |
| School Operating | false | SchoolOperatingInd |
| Foreign Office | false | ForeignOfficeInd |
| Foreign Activities | Yes (true) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (true) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | false | MoreThan5000KToIndividualsInd |
| Professional Fundraising | false | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (true) | FundraisingActivitiesInd |
| Gaming Activities | false | GamingActivitiesInd |
| Operate Hospital | false | OperateHospitalInd |
| Grants To Organizations | Yes (true) | GrantsToOrganizationsInd |
| Grants To Individuals | false | GrantsToIndividualsInd |
| Schedule J Required | false | ScheduleJRequiredInd |
| Tax Exempt Bonds | false | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | false | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | false | PYExcessBenefitTransInd |
| Loan Outstanding | false | LoanOutstandingInd |
| Grant To Related Person | false | GrantToRelatedPersonInd |
| Business Rln With Org Mem | false | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | false | BusinessRlnWithFamMemInd |
| Business Rln With Officer Ent | false | BusinessRlnWithOfficerEntInd |
| Deductible Non Cash Contri | false | DeductibleNonCashContriInd |
| Deductible Art Contribution | false | DeductibleArtContributionInd |
| Terminate Operations | false | TerminateOperationsInd |
| Partial Liquidation | false | PartialLiquidationInd |
| Disregarded Entity | false | DisregardedEntityInd |
| Related Entity | false | RelatedEntityInd |
| Related Organization Ctrl Ent | false | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | false | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | false | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (true) | ScheduleORequiredInd |
| IRP Document | 0 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Employee | 5 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (true) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | false | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | false | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | false | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | false | TaxablePartyNotificationInd |
| Nondeductible Contributions | false | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | false | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | false | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | false | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | false | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | false | IndoorTanningServicesInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 20 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 20 | IndependentVotingMemberCnt |
| Family Or Business Rln | Yes (true) | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | false | DelegationOfMgmtDutiesInd |
| Change To Org Documents | false | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | false | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | false | MembersOrStockholdersInd |
| Election Of Board Members | false | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | false | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (true) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (true) | MinutesOfCommitteesInd |
| Officer Mailing Address | false | OfficerMailingAddressInd |
| Local Chapters | false | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (true) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (true) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (true) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (true) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | false | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (true) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (true) | CompensationProcessCEOInd |
| Compensation Process Other | false | CompensationProcessOtherInd |
| Investment In Joint Venture | false | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | DEBORAH R YOBS | PersonNm |
| Phone | 8006591991 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 3610 W MARKET STREET SUITE 110 | AddressLine1Txt |
| City | AKRON | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 44333 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (21 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|
| STUART YAFFA | ||||||
| TREASURER | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| MARK GOLDFARB | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| BOB KASSAI | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| MAYRA LICHTER | ||||||
| CHAIRMAN | 2.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| JEFFREY YAFFA | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| DEANA SIMPSON | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| VERONICA OBERDORF | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| MARIE KASSAI | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| AMANDA BAXLEY KALINSKY | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| CHARLES CASH | ||||||
| SECRETARY | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| MICHAEL VITANZA | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| MARIA THACKER-GOETHE | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| JIRI SAFAR | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| RUTHIE GEORGE | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| JANINE KOCK | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| JAY LEVY | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| CAROL MITTS | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| MOLLY NOCERINO | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| FLORENCE KRANITZ | ||||||
| PRESIDENT EM | 2.00 | Yes (X) | $0 | $0 | $0 | |
| BRIAN APPLEBY | ||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |
| DEBORAH YOBS | ||||||
| PRESIDENT | 40.00 | Yes (X) | $114,979 | $0 | $0 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $114,979 | TotalReportableCompFromOrgAmt |
| Indiv Rcvd Greater Than100 K | 1 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | false | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | false | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
| Fundraising | $76,067 | FundraisingAmt |
| Government Grants | $70,000 | GovernmentGrantsAmt |
| All Other Contributions | $479,584 | AllOtherContributionsAmt |
| Total Contributions | $625,651 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | CONFERENCE INCOME | Desc |
| Business | 541900 | BusinessCd |
| Total Revenue Column | $56,912 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $56,912 | RelatedOrExemptFuncIncomeAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $56,912 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,395 | TotalRevenueColumnAmt |
| Exclusion | $1,395 | ExclusionAmt |
Gross Rents GrossRentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Real | $13,455 | RealAmt |
Rental Income Or Loss RentalIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Real | $13,455 | RealAmt |
Net Rental Income Or Loss NetRentalIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $13,455 | TotalRevenueColumnAmt |
| Exclusion | $13,455 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $43,358 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $76,067 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $14,627 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $28,731 | TotalRevenueColumnAmt |
| Exclusion | $28,731 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Sales Of Inventory | $7,201 | GrossSalesOfInventoryAmt |
| Cost Of Goods Sold | $5,489 | CostOfGoodsSoldAmt |
Net Income Or Loss NetIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,712 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $1,712 | RelatedOrExemptFuncIncomeAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $727,856 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $58,624 | RelatedOrExemptFuncIncomeAmt |
| Exclusion | $43,581 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $150,000 | TotalAmt |
| Program Services | $150,000 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $100,000 | TotalAmt |
| Program Services | $100,000 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $114,979 | TotalAmt |
| Program Services | $66,219 | ProgramServicesAmt |
| Management And General | $26,744 | ManagementAndGeneralAmt |
| Fundraising | $22,016 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $132,320 | TotalAmt |
| Program Services | $76,745 | ProgramServicesAmt |
| Management And General | $30,434 | ManagementAndGeneralAmt |
| Fundraising | $25,141 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,336 | TotalAmt |
| Program Services | $12,955 | ProgramServicesAmt |
| Management And General | $5,137 | ManagementAndGeneralAmt |
| Fundraising | $4,244 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $8,950 | TotalAmt |
| Management And General | $8,950 | ManagementAndGeneralAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $25 | TotalAmt |
| Management And General | $25 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $225 | TotalAmt |
| Management And General | $225 | ManagementAndGeneralAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $31,204 | TotalAmt |
| Program Services | $14,791 | ProgramServicesAmt |
| Management And General | $10,510 | ManagementAndGeneralAmt |
| Fundraising | $5,903 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $80,601 | TotalAmt |
| Program Services | $4,070 | ProgramServicesAmt |
| Management And General | $75,905 | ManagementAndGeneralAmt |
| Fundraising | $626 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,146 | TotalAmt |
| Program Services | $1,909 | ProgramServicesAmt |
| Management And General | $1,283 | ManagementAndGeneralAmt |
| Fundraising | $954 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,151 | TotalAmt |
| Management And General | $2,151 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,192 | TotalAmt |
| Management And General | $2,192 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | FundraisingFundraisingAmt | Management And GeneralManagementAndGeneralAmt |
|---|---|---|---|---|
| EDUCATION & SEMINARS | $128,484 | $128,484 | ||
| WEBSITE & DATABASE | $16,905 | $13,365 | $3,540 | |
| BANK SERVICE CHARGES | $9,226 | $984 | $7,750 | $492 |
| ANNUAL FUND | $5,419 | $5,419 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $10,054 | TotalAmt |
| Program Services | $75 | ProgramServicesAmt |
| Management And General | $4,628 | ManagementAndGeneralAmt |
| Fundraising | $5,351 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $819,217 | TotalAmt |
| Program Services | $569,597 | ProgramServicesAmt |
| Management And General | $168,676 | ManagementAndGeneralAmt |
| Fundraising | $80,944 | FundraisingAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $187,350 | BOYAmt |
| EOY | $251,570 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $118,338 | BOYAmt |
| EOY | $95,789 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,157 | BOYAmt |
| EOY | $2,998 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,576 | BOYAmt |
| EOY | $2,028 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $28,750 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $25,966 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,432 | BOYAmt |
| EOY | $2,784 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $555,431 | BOYAmt |
| EOY | $432,076 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $21,584 | BOYAmt |
| EOY | $20,240 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $891,868 | BOYAmt |
| EOY | $807,485 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,184 | BOYAmt |
| EOY | $16,162 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,184 | BOYAmt |
| EOY | $16,162 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $549,667 | BOYAmt |
| EOY | $553,340 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $333,017 | BOYAmt |
| EOY | $237,983 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $882,684 | BOYAmt |
| EOY | $791,323 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $891,868 | BOYAmt |
| EOY | $807,485 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$91,361 | ReconcilationRevenueExpnssAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | false | AccountantCompileOrReviewInd |
| FS Audited | Yes (true) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (true) | AuditCommitteeInd |
| Federal Grant Audit Required | false | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $285,398 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $364,010 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $619,472 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $626,556 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $625,651 | CurrentTaxYearAmt |
| Total | $2,521,087 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $285,398 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $364,010 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $619,472 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $626,556 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $625,651 | CurrentTaxYearAmt |
| Total | $2,521,087 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Support Total170 | $2,521,087 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $12,347 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $11,763 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $5,722 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $20,323 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $14,850 | CurrentTaxYearAmt |
| Total | $65,005 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year | $27,731 | CurrentTaxYearAmt |
| Total | $27,731 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $120,592 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $164,330 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,054 | CurrentTaxYearMinus2YearsAmt |
| Total | $285,976 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $2,899,799 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $64,113 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.86940 | PublicSupportCY170Pct |
| Public Support PY170 | 0.82460 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Form990 Schedule A Part VI Form990ScheduleAPartVIGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART II, LINE 10 | FormAndLineReferenceDesc |
| Explanation | VARIOUS 285,976 | ExplanationTxt |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule D IRS990ScheduleD
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $13,554 | OtherCostOrOtherBasisAmt |
| Depreciation | $11,176 | DepreciationAmt |
| Book Value | $2,378 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $15,196 | OtherCostOrOtherBasisAmt |
| Depreciation | $14,790 | DepreciationAmt |
| Book Value | $406 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $2,784 | TotalBookValueLandBuildingsAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $747,972 | TotalRevEtcAuditedFinclStmtAmt |
| Other Revenue | $20,116 | OtherRevenueAmt |
| Revenue Not Reported | $20,116 | RevenueNotReportedAmt |
| Revenue Subtotal | $727,856 | RevenueSubtotalAmt |
| Total Revenue Per Form990 | $727,856 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $839,333 | TotExpnsEtcAuditedFinclStmtAmt |
| Other Expenses Included | $20,116 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $20,116 | ExpensesNotReportedAmt |
| Expenses Subtotal | $819,217 | ExpensesSubtotalAmt |
| Total Expenses Per Form990 | $819,217 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| SCHEDULE D, PAGE 3, PART X | THE PREPARATION OF FINANCIAL STATEMENTS IN CONFORMITY WITH ACCOUNTING PRINCIPLES GENERALLY ACCEPTED IN THE UNITED STATES OF AMERICA REQUIRES THE FOUNDATION TO REPORT INFORMATION REGARDING ITS EXPOSURE TO VARIOUS TAX POSITIONS TAKEN BY THE FOUNDATION. THE FOUNDATION HAS DETERMINED WHETHER ANY TAX POSITIONS HAVE MET THE RECOGNITION THRESHOLD AND HAVE MEASURED THE FOUNDATION'S EXPOSURE TO THOSE TAX POSITIONS. MANAGEMENT BELIEVES THAT THE FOUNDATION HAS ADEQUATELY ADDRESSED ALL RELEVANT TAX POSITIONS AND THAT THERE ARE NO UNRECORDED TAX LIABILITIES. FEDERAL AND STATE TAX AUTHORITIES GENERALLY HAVE THE RIGHT TO EXAMINE AND AUDIT THE PREVIOUS THREE YEARS OF TAX RETURNS FILED. ANY INTEREST OR PENALTIES ASSESSED TO THE FOUNDATION, OF WHICH THERE WERE NONE, ARE RECORDED IN ADMINISTRATIVE EXPENSES |
| SCHEDULE D, PAGE 4, PART XI, LINE 2D | STRIDES FOR CJD EXPENSE 14,627 COST OF GOODS 5,489 |
| SCHEDULE D, PAGE 4, PART XII, LINE 2D | STRIDES FOR CJD EXPENSE 14,627 COST OF GOODS 5,489 |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)
| RegionRegionTxt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|
| ITALY | GRANTS TO RECIPIENTS | $50,000 |
| FRANCE | GRANTS TO RECIPIENTS | $50,000 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Spent | $100,000 | SubtotalSpentAmt |
| Total Spent | $100,000 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)
| Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|
| CJD RESEARCH | $50,000 | CHECK |
| CJD RESEARCH | $50,000 | CHECK |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transfer To Foreign Corp | false | TransferToForeignCorpInd |
| Interest In Foreign Trust | false | InterestInForeignTrustInd |
| Foreign Corp Ownership | false | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | false | PassiveForeignInvestmestCoInd |
| Foreign Partnership | false | ForeignPartnershipInd |
| Boycott Countries | false | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| SCHEDULE F, PAGE 1, PART I, LINE 2 | THE 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 3 | ITALY 50,000 0 FRANCE 50,000 0 |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | STRIDES FOR CJD | Event1Nm |
| Gross Receipts Event1 | $119,425 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $76,067 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $43,358 | GrossRevenueEvent1Amt |
| Other Direct Expenses Event1 | $14,627 | OtherDirectExpensesEvent1Amt |
| Gross Receipts Total | $119,425 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $76,067 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $43,358 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $14,627 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $14,627 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $28,731 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (3 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|
| CASE WESTERN RESERVE UNIVERSITY | ||||||||
| 2085 ADELBERT RD | CLEVELAND | OH | 44106 | 341018992 | 501C3 | $50,000 | CJD RESEARCH | |
| COLORADO STATE UNIVERSITY | ||||||||
| 327 PATHOLOGY BUILDING | FORT COLLINS | CO | 80523 | 846000545 | 501C3 | $50,000 | CJD RESEARCH | |
| UNIVERSITY OF CALIFORNIA SAN DIEGO | ||||||||
| 9500 GILMAN DRIVE | SAN DIEGO | CA | 92093 | 956006144 | 501C3 | $50,000 | CJD RESEARCH | UC303 RM 101 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | SCHEDULE I, PAGE 1, PART I, LINE 2 | FormAndLineReferenceDesc |
| Explanation | THE 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 ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990 - ORGANIZATION'S MISSION | CREUTZFELDT-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 6 | THE 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, 69 VOLUNTEERS CONTRIBUTED OVER 5,000 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 4A | FAMILY CONFERENCE: MORE THAN 100 FAMILY MEMBERS AND 44 PRION DISEASE EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2015. 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 1200 FAMILIES HAVE COMPLETED QUESTIONNAIRES, INCLUDING 61 IN 2015. 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 2015, 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 16 TELECONFERENCE SUPPORT GROUPS IN 2015 WITH AN AVERAGE OF 25 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. |
| FORM 990, PAGE 2, PART III, LINE 4D | ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS AND FAMILY DISCRETIONARY FUND |
| FORM 990, PAGE 6, PART VI, LINE 2 | BOB KASSAI MARIE KASSAI FAMILY STUART YAFFA JEFFREY YAFFA FAMILY |
| FORM 990, PAGE 6, PART VI, LINE 11B | THE 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 12C | THE CONFLICT OF INTEREST POLICY IS ENFORCED BY THE BOARD AND BOARD MEMBERS AND REQUIRED TO DISCLOSE KNOWN CONFLICTS. |
| FORM 990, PAGE 6, PART VI, LINE 15A | THE 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 19 | THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS AND FINANCIAL STATEMENTS AVAILABLE UPON REQUEST. |
| FORM 990, PART XI, LINE 9 | STRIDES FOR CJD EXPENSE 14,627 COST OF GOODS 5,489 STRIDES FOR CJD EXPENSE -14,627 COST OF GOODS -5,489 |
Comments