2017-11-09T11:00:38-05:00 2016-12-31 341897853 CRUM & COMPANY 525 N CLEVELAND MASSILLON RD STE 10 AKRON OH 443333332 990 2016-01-01 650404623 CREUTZFELDT-JAKOB DISEASE FOUNDATION INC CREU 8006591991 3610 W MARKET ST SUITE 110 AKRON OH 44333 DEBORAH YOBS PRESIDENT 2127195900 2017-11-15 KEVIN K CRUM P00255436 3308671222 2017-11-02 223CB5FFAF71AA1FAA84BF7F051B24F13364AEE4 7F10500C6AA2DB0BB4B0E4862A6B16FAF8B2CC02 2016 2021-01-29 14:40:06Z DEBORAH YOBS 3610 W MARKET ST SUITE 110 AKRON OH 44333 1060251 false X WWW.CJDFOUNDATION.ORG X 1993 FL TO PROMOTE RESEARCH, EDUCATION, AWARENESS, PATIENT AND FAMILY SUPPORT SERVICES, AND OTHER CHARITABLE PROGRAMS REGARDING PRION DISEASES INCLUDING CREUTZFELDT-JAKOB DISEASE. 20 20 5 105 0 625651 910074 56912 48101 1395 12730 43898 71458 727856 1042363 250000 204000 0 269635 271261 0 60579 299582 340824 819217 816085 -91361 226278 807485 1045907 16162 29373 791323 1016534 X 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 false false 335828 50217 FAMILY SUPPORT AND OTHER PROGRAMS THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS AND SPEAKER SERIES. HELPLINE SUPPORT: THE CJD FOUNDATION RESPONDED TO MORE THAN 1,400 CALLS AND EMAILS IN 2016, 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 85 FAMILIES AND HOSPICE PROVIDERS. FAMILY CONFERENCE: MORE THAN 100 FAMILY MEMBERS AND 35 PRION DISEASE EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2016. CONFERENCE SESSIONS INCLUDE FAMILY SUPPORT WORKSHOPS, RESEARCH UPDATES, AND INFORMATION ON SURVEILLANCE, TREATMENT, AND EARLY DIAGNOSIS OF CJD. THE CONFERENCE FACILITATES DIALOGUE BETWEEN PROFESSIONALS AND FAMILY MEMBERS AND ENABLES RESEARCHERS TO CONNECT AND COLLABORATE WITH PEERS. QUESTIONNAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SURVEILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,200 FAMILIES HAVE COMPLETED QUESTIONNAIRES. THIS ENABLES FAMILIES TO DOCUMENT THEIR LOVED ONE'S CASE AND PROVIDES ANONYMOUS DATA FOR DOCTORS AND SCIENTISTS ON PATTERNS OF SYMPTOMS, DISEASE ONSET AND DURATION, AND MORE. RESULTS ARE COMPILED THROUGHOUT THE YEAR AND SHARED ANNUALLY AT THE CJD FOUNDATION FAMILY CONFERENCE. FAMILY WORKSHOPS AND SUPPORT GROUPS: IN 2016, 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 2016 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. INTERVIEWS WITH PRION DISEASE EXPERTS WERE RECORDED AND POSTED TO THE CJD FOUNDATION WEBSITE. 236067 204000 RESEARCH GRANTS IN 2016, THE CJD FOUNDATION AWARDED 204,000 IN GRANTS TO 5 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. MORE THAN 30 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. 58592 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 2016, WE PROVIDED MEDICAL EDUCATION PROGRAMS TO HOSPITALS IN MINNESOTA, CALIFORNIA, NEW YORK, ARIZONA, OHIO, AND COLORADO. FUNERAL AND INFECTION CONTROL EDUCATION WAS ALSO PROVIDED IN ALABAMA, OHIO, AND NEW YORK. 15290 ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS AND FAMILY DISCRETIONARY FUND 15290 645777 true true false false false false false false false false true false false false true true true false false false true true false false true false false true false false false false false false false false false false false false false false false false false false false true 0 0 5 true false false false false false false false false false false X 20 20 true false false false false false false true true false false true true true true false true true false false OH FL NY CT X DEBORAH R YOBS 8006591991 3610 W MARKET STREET SUITE 110 AKRON OH 44333 STUART YAFFA TREASURER 5.00 X X 0 0 0 BOB KASSAI BOARD MEMBER 2.00 X 0 0 0 MAYRA LICHTER CHAIRMAN 2.00 X X 0 0 0 JEFFREY YAFFA BOARD MEMBER 2.00 X 0 0 0 DEANA SIMPSON BOARD MEMBER 2.00 X 0 0 0 VERONICA OBERDORF BOARD MEMBER 2.00 X 0 0 0 MARIE KASSAI BOARD MEMBER 2.00 X 0 0 0 AMANDA BAXLEY KALINSKY BOARD MEMBER 2.00 X 0 0 0 CHARLES CASH SECRETARY 5.00 X X 0 0 0 MICHAEL VITANZA BOARD MEMBER 2.00 X 0 0 0 MARIA THACKER-GOETHE BOARD MEMBER 2.00 X 0 0 0 JIRI SAFAR BOARD MEMBER 2.00 X 0 0 0 JANINE KOCK BOARD MEMBER 2.00 X 0 0 0 JAY LEVY BOARD MEMBER 2.00 X 0 0 0 CAROL MITTS BOARD MEMBER 2.00 X 0 0 0 MOLLY NOCERINO BOARD MEMBER 2.00 X 0 0 0 BRIAN APPLEBY BOARD MEMBER 2.00 X 0 0 0 PAMELA FEAR BOARD MEMBER 2.00 X 0 0 0 CORBY W FOSTER BOARD MEMBER 2.00 X 0 0 0 HATTE BLEJER BOARD MEMBER 2.00 X 0 0 0 DEBORAH YOBS PRESIDENT 40.00 X 111457 0 0 111457 1 false false false 164863 70000 675211 910074 CONFERENCE INCOME 541900 48101 48101 48101 12730 12730 26310 26310 26310 26310 56934 164863 15746 41188 41188 4258 2142 2116 2116 MISCELLANEOUS 541900 1844 1844 1844 1042363 50217 82072 100000 100000 104000 104000 111457 79134 18948 13375 159804 113229 27712 18863 9928 9928 39211 29911 8353 947 5122 5122 57354 40676 9865 6813 5538 3016 2376 146 1412 1001 243 168 6108 4331 1051 726 FAMILY CONFERENCE 100483 100483 PROGRAM EXPENSE 58986 57206 1780 CONTRACT LABOR 17611 7319 7562 2730 BANK SERVICE CHARGES 14457 349 7108 7000 24614 14803 9811 816085 645777 109729 60579 260 206 251310 498647 95789 68662 2998 2084 2028 33470 23736 2784 9734 432076 445731 20240 20843 807485 1045907 16162 11180 18193 16162 29373 X 553340 788603 237983 227931 791323 1016534 807485 1045907 226278 -1067 X false true X true false X 364010 619472 626556 625651 910074 3145763 364010 619472 626556 625651 910074 3145763 10633 3135130 11763 5722 20323 14850 12730 65388 27731 68342 96073 164330 1054 165384 3472608 52359 0.90280 0.86940 X PART II, LINE 10 VARIOUS 165,384 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 17818 8786 9032 15652 14950 702 9734 TENANT SECURITY DEPOSIT 18193 18193 X 1064872 -1067 5688 17888 22509 1042363 1042363 839661 5688 17888 23576 816085 816085 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 15,746 COST OF GOODS 2,142 SCHEDULE D, PAGE 4, PART XII, LINE 2D STRIDES FOR CJD EXPENSE 15,746 COST OF GOODS 2,142 true GERMANY GRANTS TO RECIPIENTS 34000 ITALY GRANTS TO RECIPIENTS 50000 CANADA GRANTS TO RECIPIENTS 20000 104000 104000 CJD RESEARCH 34000 CHECK CJD RESEARCH 50000 CHECK CJD RESEARCH 20000 CHECK false false false false false false 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 GERMANY 34,000 0 ITALY 50,000 0 CANADA 20,000 0 STRIDES FOR CJD 221797 164863 56934 15746 221797 164863 56934 15746 15746 41188 true LABORATORY OF PERSISTENT VIRAL DISE 903 S 4TH STREET HAMILTON MT 59840 521986675 501C3 50000 CJD RESEARCH INSTITUTE FOR NEURODEGENERATIVE DIS 675 NELSON RISING LANE 3RD FLOOR SAN FRANCISCO CA 94158 916036496 501C3 50000 CJD RESEARCH SCHEDULE I, PAGE 1, PART I, LINE 2 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. 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, 105 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 EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2016. CONFERENCE SESSIONS INCLUDE FAMILY SUPPORT WORKSHOPS, RESEARCH UPDATES, AND INFORMATION ON SURVEILLANCE, TREATMENT, AND EARLY DIAGNOSIS OF CJD. THE CONFERENCE FACILITATES DIALOGUE BETWEEN PROFESSIONALS AND FAMILY MEMBERS AND ENABLES RESEARCHERS TO CONNECT AND COLLABORATE WITH PEERS. QUESTIONNAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SURVEILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,200 FAMILIES HAVE COMPLETED QUESTIONNAIRES. THIS ENABLES FAMILIES TO DOCUMENT THEIR LOVED ONE'S CASE AND PROVIDES ANONYMOUS DATA FOR DOCTORS AND SCIENTISTS ON PATTERNS OF SYMPTOMS, DISEASE ONSET AND DURATION, AND MORE. RESULTS ARE COMPILED THROUGHOUT THE YEAR AND SHARED ANNUALLY AT THE CJD FOUNDATION FAMILY CONFERENCE. FAMILY WORKSHOPS AND SUPPORT GROUPS: IN 2016, 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 2016 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. INTERVIEWS WITH PRION DISEASE EXPERTS WERE RECORDED AND POSTED TO THE CJD FOUNDATION WEBSITE. 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 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 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS AND FINANCIAL STATEMENTS AVAILABLE UPON REQUEST. FORM 990, PART XI, LINE 9 STRIDES FOR CJD EXPENSE 15,746 COST OF GOODS 2,142 STRIDES FOR CJD EXPENSE -15,746 COST OF GOODS -2,142