CREUTZFELDT-JAKOB DISEASE FOUNDATION INC: Form 990, tax year 2023
View the entire original 990 at ProPublica ↗
- Organization
- CREUTZFELDT-JAKOB DISEASE FOUNDATION INC (EIN 65-0404623)
- Tax period
- 2023-01-01 to 2023-12-31
- Filed
- 2024-08-30
- IRS object ID
- 202432439349300013
- Schema version
- 2023v5.0
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2024-08-30T09:29:53-04:00 | ReturnTs |
| Tax Period End | 2023-12-31 | 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 | 1640 AKRON PENINSULA RD STE 102 | AddressLine1Txt |
| City | AKRON | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 44313 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2023-01-01 | 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 | 3634 WEST MARKET STREET 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/EXEC. DIR | PersonTitleTxt |
| Phone | 2127195900 | PhoneNum |
| Signature | 2024-08-01 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IRS Responsible Prty Info Curr | false | IRSResponsiblePrtyInfoCurrInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | KEVIN K CRUM | PreparerPersonNm |
| PTIN | P00255436 | PTIN |
| Phone | 3308671222 | PhoneNum |
| Preparation | 2024-08-07 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2023 | TaxYr |
| Build TS | 2024-08-08 14:25:15Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | DEBORAH YOBS | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 3634 WEST MARKET STREET SUITE 110 | AddressLine1Txt |
| City | AKRON | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 44333 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $5,318,229 | 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 SUPPORT FAMILIES AFFECTED BY PRION DISEASE, RAISE AWARENESS, AND SUPPORT MEDICAL EDUCATION AND RESEARCH. | ActivityOrMissionDesc |
| Voting Members Governing Body | 18 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 18 | VotingMembersIndependentCnt |
| Total Employee | 6 | TotalEmployeeCnt |
| Total Volunteers | 350 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| PY Contributions Grants | $2,735,803 | PYContributionsGrantsAmt |
| CY Contributions Grants | $2,770,443 | CYContributionsGrantsAmt |
| CY Program Service Revenue | $41,100 | CYProgramServiceRevenueAmt |
| PY Investment Income | $37,113 | PYInvestmentIncomeAmt |
| CY Investment Income | $84,302 | CYInvestmentIncomeAmt |
| PY Other Revenue | $89,001 | PYOtherRevenueAmt |
| CY Other Revenue | $47,635 | CYOtherRevenueAmt |
| PY Total Revenue | $2,861,917 | PYTotalRevenueAmt |
| CY Total Revenue | $2,943,480 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $651,433 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $718,205 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $370,895 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $396,748 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $84,293 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $252,114 | PYOtherExpensesAmt |
| CY Other Expenses | $426,645 | CYOtherExpensesAmt |
| PY Total Expenses | $1,274,442 | PYTotalExpensesAmt |
| CY Total Expenses | $1,541,598 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $1,587,475 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $1,401,882 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $6,412,924 | TotalAssetsBOYAmt |
| Total Assets EOY | $8,137,536 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $66,562 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $127,957 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $6,346,362 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $8,009,579 | 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, SUPPORT MEDICAL EDUCATION, AND FUND RESEARCH. WE CARRY OUT THIS MISSION THROUGH: -FAMILY SUPPORT INCLUDING A 7-DAY HELPLINE, REFERRALS, SUPPORT GROUPS, AND TELECONFERENCE SPEAKER SERIES -EDUCATION AND INFORMATION FOR FAMILIES, CAREGIVERS, MEDICAL PROFESSIONALS, FUNERAL PROFESSIONALS, AND INFECTION CONTROL SPECIALISTS -ADVOCACY WITH SENATORS AND PUBLIC POLICY MAKERS -ANNUAL FAMILY CONFERENCE THAT BRINGS TOGETHER AFFECTED FAMILIES AND PRION DISEASE EXPERTS -FAMILY WORKSHOPS HELD AROUND THE COUNTRY -COLLABORATION WITH SCIENTISTS, CLINICIANS, MEDICAL CENTERS, HEALTH AUTHORITIES, PROFESSIONAL ORGANIZATIONS, AND INTERNATIONAL PATIENT AS | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $469,079 | ExpenseAmt |
| Desc | THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, CAREGIVER SUPPORT GROUPS, AND SUPPORT AND/OR REFERRALS TO THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD (TAPCJD). THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR TAPCJD AND OFFERS GUIDANCE, EDUCATION, AND SUPPORT TO FAMILIES AFFECTED BY PRION DISEASE, WHILE COLLECTING NATURAL HISTORY DATA THAT CAN BE USED FOR A VARIETY OF RESEARCH PURPOSES. HELPLINE SUPPORT: THE CJD FOUNDATION RESPONDED TO 2,200 CALLS AND EMAILS IN 2023, 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 158 FAMILIES AND HOSPICE PROVIDERS. AT OUR 2023 CJD FOUNDATION FAMILY CONFERENCE, A TOTAL OF 150 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS ATTENDED. CONFERENCE SESSIONS INCLUDED AN UPDATE FROM THE CENTERS FOR DISEASE CONTROL AND PREVENTION, RESEARCH UPDATES, AND INFORMATION ON SURVEILLANCE, TREATMENT, AND EARLY DIAGNOSIS OF CJD. SUPPORT GROUPS, WEBINARS AND SPEAKER SERIES: WE HOSTED 36 TELECONFERENCE SUPPORT GROUPS IN 2023. 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $776,486 | ExpenseAmt |
| Grant | $718,205 | GrantAmt |
| Desc | IN 2023, THE CJD FOUNDATION AWARDED 718,205 IN GRANTS TO 9 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 45 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 86 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $42,541 | ExpenseAmt |
| Desc | THE CJD FOUNDATION HOSTS GRANT ROUND PRESENTATION, INFECTION CONTROL SEMINARS, AND FUNERAL EDUCATION AROUND THE COUNTRY, AT NO CHARGE. OUR MEDICAL EDUCATION PROGRAMS ARE INSTRUCTED BY PRION DISEASE EXPERTS. IN 2023, WE PROVIDED MEDICAL EDUCATION: MEDICAL EDUCATION NEUROLOGY GRAND ROUNDS WERE HELD IN: -TEXAS AT DSHS, WHICH INCLUDES STAFF FROM DSHS, HEALTH AND HUMAN SERVICES COMMISSION, LOCAL HEALTH DEPARTMENTS, LOCAL MENTAL HEALTH CENTERS, HOSPITALS, INSTITUTIONS OF HIGHER EDUCATION, AND OTHERS THROUGHOUT TEXAS. -IMED/SALT LAKE VALLEY NEUROLOGY DEPARTMENT -BAYSTATE UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL -CAPE COD FALMOUTH HOSPITAL IN FALMOUTH, MA. FUNERAL EDUCATION PRESENATIONS WERE HELD IN: -INDIANAPOLIS, INDIANA WE ALSO RESPONDED TO REQUESTS FOR INFORMATION FROM 60 MEDICAL PROFESSIONALS VIA OUR HELPLINE, AND MADE INFORMATION AVAILABLE TO MEDICAL, INFECTIOUS DISEASE, HOSPICE AND GENETIC COUNSELING PROFESSIONALS THROUGH OUR WEBSITE, EDUCATIONAL BINDERS, AND ANNUAL CONFERENCE WHICH IS RECORDED AND POSTED ON OUR WEBSITE. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $45,929 | ExpenseAmt |
| Desc | ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $45,929 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $1,334,035 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (true) | 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 |
| Donor Rstr Or Quasi Endowments | false | DonorRstrOrQuasiEndowmentsInd |
| 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 With35 Ctrl Ent | false | BusinessRlnWith35CtrlEntInd |
| 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 | 6 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Employee | 6 | 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 |
| Subj To Tax Rmnrtn Ex Prcht Pymt | false | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | false | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 18 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 18 | 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 | Yes (true) | 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 |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | DE | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| 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 | 3634 W MARKET STREET SUITE 110 | AddressLine1Txt |
| City | AKRON | CityNm |
| State Abbreviation | OH | StateAbbreviationCd |
| ZIP | 44333 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (23 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd |
|---|---|---|---|---|---|---|
| DEBORAH YOBS | ||||||
| PRESIDENT/EX | 40.00 | Yes (X) | $111,457 | $0 | $0 | |
| BRIAN APPLEBY | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| TREVOR BAIERL | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| PAMELA FEAR | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| LAVONNE HALL | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| CLARENCE HUNTER | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| AMANDA BAXLEY KALINSKY | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| JANINE KOCK | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| JAY LEVY | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| MAYRA LICHTER | ||||||
| CHAIRMAN, RE | 2.00 | Yes (X) | $0 | $0 | $0 | Yes (X) |
| PATRICIA MCGILL | ||||||
| TREASURER | 2.00 | Yes (X) | $0 | $0 | $0 | Yes (X) |
| KRISTEN MCGINNIS | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| BREANDA MEANEY | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| DAVE MORRIS | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| FRANK MYERS | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| MOLLY NOCERINO | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| JOE POHL | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| TIM SCHWISTER | ||||||
| SECRETARY | 2.00 | Yes (X) | $0 | $0 | $0 | Yes (X) |
| DEANA SIMPSON | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| MARIA THACKER-GOETHE | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| MICHAEL VITANZA | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| JEFFREY YAFFA | ||||||
| BOARD MEMBER | 2.00 | $0 | $0 | $0 | Yes (X) | |
| STUART YAFFA | ||||||
| VICE CHAIR | 2.00 | Yes (X) | $0 | $0 | $0 | Yes (X) |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $111,457 | 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 | $636,608 | FundraisingAmt |
| Government Grants | $74,890 | GovernmentGrantsAmt |
| All Other Contributions | $2,058,945 | AllOtherContributionsAmt |
| Noncash Contributions | $2,002 | NoncashContributionsAmt |
| Total Contributions | $2,770,443 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | CONFERENCE INCOME | Desc |
| Business | 541900 | BusinessCd |
| Total Revenue Column | $41,100 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $41,100 | RelatedOrExemptFuncIncomeAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $41,100 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $245,716 | TotalRevenueColumnAmt |
| Exclusion | $245,716 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $2,149,816 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $2,311,230 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | -$161,414 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$161,414 | TotalRevenueColumnAmt |
| Exclusion | -$161,414 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $100,514 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $636,608 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $63,519 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $36,995 | TotalRevenueColumnAmt |
| Exclusion | $36,995 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | MISCELLANEOUS | Desc |
| Business | 541900 | BusinessCd |
| Total Revenue Column | $10,640 | TotalRevenueColumnAmt |
| Exclusion | $10,640 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $10,640 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $2,943,480 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $41,100 | RelatedOrExemptFuncIncomeAmt |
| Exclusion | $131,937 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $350,000 | TotalAmt |
| Program Services | $350,000 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $368,205 | TotalAmt |
| Program Services | $368,205 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $111,457 | TotalAmt |
| Program Services | $88,387 | ProgramServicesAmt |
| Management And General | $13,633 | ManagementAndGeneralAmt |
| Fundraising | $9,437 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $285,291 | TotalAmt |
| Program Services | $226,240 | ProgramServicesAmt |
| Management And General | $34,896 | ManagementAndGeneralAmt |
| Fundraising | $24,155 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $17,594 | TotalAmt |
| Management And General | $17,594 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $57,871 | TotalAmt |
| Program Services | $38,287 | ProgramServicesAmt |
| Management And General | $8,082 | ManagementAndGeneralAmt |
| Fundraising | $11,502 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $19,385 | TotalAmt |
| Program Services | $6,639 | ProgramServicesAmt |
| Management And General | $11,399 | ManagementAndGeneralAmt |
| Fundraising | $1,347 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,663 | TotalAmt |
| Program Services | $18,099 | ProgramServicesAmt |
| Management And General | $2,632 | ManagementAndGeneralAmt |
| Fundraising | $1,932 | FundraisingAmt |
Interest InterestGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $194 | TotalAmt |
| Management And General | $194 | ManagementAndGeneralAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $10,211 | TotalAmt |
| Management And General | $10,211 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,099 | TotalAmt |
| Management And General | $7,099 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | FundraisingFundraisingAmt |
|---|---|---|---|
| FAMILY CONFERENCE | $184,883 | $184,883 | |
| TELENEUROLOGY STUDY | $28,000 | $28,000 | |
| PROGRAM EXPENSE | $21,810 | $15,302 | $6,508 |
| DONATION COLLECTION FEES | $13,689 | $2,186 | $11,503 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $43,246 | TotalAmt |
| Program Services | $7,807 | ProgramServicesAmt |
| Management And General | $17,530 | ManagementAndGeneralAmt |
| Fundraising | $17,909 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,541,598 | TotalAmt |
| Program Services | $1,334,035 | ProgramServicesAmt |
| Management And General | $123,270 | ManagementAndGeneralAmt |
| Fundraising | $84,293 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $439 | BOYAmt |
| EOY | $251 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $323,687 | BOYAmt |
| EOY | $442,999 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $62,062 | BOYAmt |
| EOY | $35,054 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $14,888 | BOYAmt |
| EOY | $20,067 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,967 | BOYAmt |
| EOY | $7,583 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $29,591 | BOYAmt |
| EOY | $18,621 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $76,840 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $38,771 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $59,471 | BOYAmt |
| EOY | $38,069 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,913,530 | BOYAmt |
| EOY | $7,531,936 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $41,667 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,289 | BOYAmt |
| EOY | $1,289 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,412,924 | BOYAmt |
| EOY | $8,137,536 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $13,417 | BOYAmt |
| EOY | $18,694 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $77,235 | EOYAmt |
Unsecured Notes Loans Payable UnsecuredNotesLoansPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $53,145 | BOYAmt |
| EOY | $32,028 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $66,562 | BOYAmt |
| EOY | $127,957 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,123,295 | BOYAmt |
| EOY | $6,016,665 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,223,067 | BOYAmt |
| EOY | $1,992,914 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,346,362 | BOYAmt |
| EOY | $8,009,579 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,412,924 | BOYAmt |
| EOY | $8,137,536 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | $1,401,882 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $261,335 | NetUnrlzdGainsLossesInvstAmt |
| 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 | $1,552,666 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,732,905 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $2,482,682 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $2,735,803 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $2,770,443 | CurrentTaxYearAmt |
| Total | $11,274,499 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,552,666 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,732,905 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $2,482,682 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $2,735,803 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $2,770,443 | CurrentTaxYearAmt |
| Total | $11,274,499 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $916,852 | SubstantialContributorsTotAmt |
| Public Support Total170 | $10,357,647 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $16,398 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $22,028 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $37,997 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $83,547 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $245,716 | CurrentTaxYearAmt |
| Total | $405,686 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $41,225 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $165 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $10,270 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $88,001 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $46,635 | CurrentTaxYearAmt |
| Total | $186,296 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $11,866,481 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $135,341 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.87280 | PublicSupportCY170Pct |
| Public Support PY170 | 0.96540 | 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 0 | 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 C IRS990ScheduleC
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $1,795,686 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $1,795,686 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $239,784 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $59,946 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $179,351 | CurrentYearMinus3Amt |
| Current Year Minus2 | $186,581 | CurrentYearMinus2Amt |
| Current Year Minus1 | $205,311 | CurrentYearMinus1Amt |
| Current Year | $239,784 | CurrentYearAmt |
| Total | $811,027 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $1,216,541 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $21,013 | CurrentYearMinus3Amt |
| Current Year Minus2 | $19,559 | CurrentYearMinus2Amt |
| Total | $40,572 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $44,838 | CurrentYearMinus3Amt |
| Current Year Minus2 | $46,645 | CurrentYearMinus2Amt |
| Current Year Minus1 | $51,328 | CurrentYearMinus1Amt |
| Current Year | $59,946 | CurrentYearAmt |
| Total | $202,757 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $304,136 | GrassrootsCeilingAmt |
Schedule D IRS990ScheduleD
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $45,513 | OtherCostOrOtherBasisAmt |
| Depreciation | $38,771 | DepreciationAmt |
| Book Value | $6,742 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $31,327 | OtherCostOrOtherBasisAmt |
| Book Value | $31,327 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $38,069 | TotalBookValueLandBuildingsAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $3,638,258 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $261,335 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $369,924 | DonatedServicesAndUseFcltsAmt |
| Other Revenue | $63,519 | OtherRevenueAmt |
| Revenue Not Reported | $694,778 | RevenueNotReportedAmt |
| Revenue Subtotal | $2,943,480 | RevenueSubtotalAmt |
| Total Revenue Per Form990 | $2,943,480 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $1,975,041 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $369,924 | DonatedServicesUseFcltsAmt |
| Other Expenses Included | $63,519 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $433,443 | ExpensesNotReportedAmt |
| Expenses Subtotal | $1,541,598 | ExpensesSubtotalAmt |
| Total Expenses Per Form990 | $1,541,598 | 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 63,519 |
| SCHEDULE D, PAGE 4, PART XII, LINE 2D | STRIDES FOR CJD EXPENSE 63,519 |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (4 entries)
| RegionRegionTxt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|
| ITALY | GRANTS TO RECIPIENTS | $50,000 |
| CANADA | GRANTS TO RECIPIENTS | $50,000 |
| AUSTRALIA | GRANTS TO RECIPIENTS | $77,235 |
| UNITED KINGDOM | GRANTS TO RECIPIENTS | $190,970 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Spent | $368,205 | SubtotalSpentAmt |
| Total Spent | $368,205 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (4 entries)
| Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|
| CJD RESEARCH | $50,000 | WIRE TRANSFER |
| CJD RESEARCH | $50,000 | WIRE TRANSFER |
| CJD RESEARCH | $77,235 | WIRE TRANSFER |
| CJD RESEARCH | $190,970 | WIRE TRANSFER |
| 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 AS UPDATES AND WRITTEN REPORTS ON PROJECTS PROVIDED AT THE FAMILY CONFERENCE. |
| SCHEDULE F, PAGE 1, PART I, LINE 3 | ITALY 50,000 0 CANADA 50,000 0 AUSTRALIA 77,235 0 UNITED KINGDOM 190,970 0 |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | STRIDES FOR CJD | Event1Nm |
| Gross Receipts Event1 | $657,830 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $557,316 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $100,514 | GrossRevenueEvent1Amt |
| Other Direct Expenses Event1 | $63,519 | OtherDirectExpensesEvent1Amt |
| Gross Receipts Total | $657,830 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $557,316 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $100,514 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $63,519 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $63,519 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $36,995 | 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 |
|---|---|---|---|---|---|---|---|
| CASE WESTERN RESERVE | |||||||
| 10900 EUCLID AVENUE | CLEVELAND | OH | 44106 | 341018922 | 501C3 | $150,000 | RESEARCH |
| CREIGHTON UNIVERSITY | |||||||
| 2500 CALIFORNIA PLZ | OMAHA | NE | 68178 | 470376583 | 501C3 | $100,000 | RESEARCH |
| BOSTON UNIVERSITY | |||||||
| 72 E CONCORD STREET | BOSTON | MA | 02118 | 042103547 | 501C3 | $100,000 | RESEARCH |
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 AWARDS GRANTS BASED ON PROPOSED RESEARCH BUDGETS AND MONITORS THE STATUS OF THE RESEARCH THROUGH VARIOUS MEANS AS WELL AS UPDATES AND WRITTEN REPORTS ON PROJECTS PROVIDED AT THE FAMILY CONFERENCE. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (12 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, SUPPORT MEDICAL EDUCATION, AND FUND RESEARCH. WE CARRY OUT THIS MISSION THROUGH: -FAMILY SUPPORT INCLUDING A 7-DAY HELPLINE, REFERRALS, SUPPORT GROUPS, AND TELECONFERENCE SPEAKER SERIES -EDUCATION AND INFORMATION FOR FAMILIES, CAREGIVERS, MEDICAL PROFESSIONALS, FUNERAL PROFESSIONALS, AND INFECTION CONTROL SPECIALISTS -ADVOCACY WITH SENATORS AND PUBLIC POLICY MAKERS -ANNUAL FAMILY CONFERENCE THAT BRINGS TOGETHER AFFECTED FAMILIES AND PRION DISEASE EXPERTS -FAMILY WORKSHOPS HELD AROUND THE COUNTRY -COLLABORATION WITH SCIENTISTS, CLINICIANS, MEDICAL CENTERS, HEALTH AUTHORITIES, PROFESSIONAL ORGANIZATIONS, AND INTERNATIONAL PATIENT ASSOCIATIONS -COMMUNICATION OF CURRENT RESEARCH AND FOUNDATION ACTIVITIES VIA ANNUAL CONFERENCE, WEBSITE, SOCIAL MEDIA, EMAILS, AND FAMILY TELECONFERENCES -RESEARCH GRANT PROGRAM, WHICH INCLUDES NATIONAL AND INTERNATIONAL AWARDEES SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE |
| FORM 990, PAGE 1, PART I, LINE 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, 350 CONTRIBUTED OVER 6,500 HOURS. WITHOUT THE EFFORTS OF THESE VOLUNTEERS, WE COULD NOT HAVE SERVED OUR COMMUNITY WITH THE PROGRAMS WE OFFER. |
| FORM 990, PAGE 2, PART III, LINE 4A | THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, CAREGIVER SUPPORT GROUPS, AND SUPPORT AND/OR REFERRALS TO THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD (TAPCJD). THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR TAPCJD AND OFFERS GUIDANCE, EDUCATION, AND SUPPORT TO FAMILIES AFFECTED BY PRION DISEASE, WHILE COLLECTING NATURAL HISTORY DATA THAT CAN BE USED FOR A VARIETY OF RESEARCH PURPOSES. HELPLINE SUPPORT: THE CJD FOUNDATION RESPONDED TO 2,200 CALLS AND EMAILS IN 2023, 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 158 FAMILIES AND HOSPICE PROVIDERS. AT OUR 2023 CJD FOUNDATION FAMILY CONFERENCE, A TOTAL OF 150 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS ATTENDED. CONFERENCE SESSIONS INCLUDED AN UPDATE FROM THE CENTERS FOR DISEASE CONTROL AND PREVENTION, RESEARCH UPDATES, AND INFORMATION ON SURVEILLANCE, TREATMENT, AND EARLY DIAGNOSIS OF CJD. SUPPORT GROUPS, WEBINARS AND SPEAKER SERIES: WE HOSTED 36 TELECONFERENCE SUPPORT GROUPS IN 2023. 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 4C | THE CJD FOUNDATION HOSTS GRANT ROUND PRESENTATION, INFECTION CONTROL SEMINARS, AND FUNERAL EDUCATION AROUND THE COUNTRY, AT NO CHARGE. OUR MEDICAL EDUCATION PROGRAMS ARE INSTRUCTED BY PRION DISEASE EXPERTS. IN 2023, WE PROVIDED MEDICAL EDUCATION: MEDICAL EDUCATION NEUROLOGY GRAND ROUNDS WERE HELD IN: -TEXAS AT DSHS, WHICH INCLUDES STAFF FROM DSHS, HEALTH AND HUMAN SERVICES COMMISSION, LOCAL HEALTH DEPARTMENTS, LOCAL MENTAL HEALTH CENTERS, HOSPITALS, INSTITUTIONS OF HIGHER EDUCATION, AND OTHERS THROUGHOUT TEXAS. -IMED/SALT LAKE VALLEY NEUROLOGY DEPARTMENT -BAYSTATE UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL -CAPE COD FALMOUTH HOSPITAL IN FALMOUTH, MA. FUNERAL EDUCATION PRESENATIONS WERE HELD IN: -INDIANAPOLIS, INDIANA WE ALSO RESPONDED TO REQUESTS FOR INFORMATION FROM 60 MEDICAL PROFESSIONALS VIA OUR HELPLINE, AND MADE INFORMATION AVAILABLE TO MEDICAL, INFECTIOUS DISEASE, HOSPICE AND GENETIC COUNSELING PROFESSIONALS THROUGH OUR WEBSITE, EDUCATIONAL BINDERS, AND ANNUAL CONFERENCE WHICH IS RECORDED AND POSTED ON OUR WEBSITE. |
| FORM 990, PAGE 2, PART III, LINE 4D | ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS. |
| FORM 990, PAGE 6, PART VI, LINE 2 | STUART YAFFA JEFFREY YAFFA VICE CHAIR BOARD MEMBER 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 WHO ARE 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 17 | KANSAS, NEW JERSEY, OREGON, VIRGINIA, WASHINGTON |
| 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 63,519 STRIDES FOR CJD EXPENSE -63,519 |
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