2016-11-15T14:37:41-06:00 2015-12-31 341897853 CRUM & COMPANY 525 N CLEVELAND MASSILLON RD STE 10 AKRON OH 443333332 990 2015-01-01 650404623 CREUTZFELDT-JAKOB DISEASE FOUNDATION INC CREU 8006591991 3610 W MARKET ST SUITE 110 AKRON OH 44333 DEBORAH YOBS PRESIDENT 2127195900 2016-10-25 KEVIN K CRUM P00255436 3308671222 2016-11-15 2015 2017-02-10 21:41:12Z X DEBORAH YOBS 3610 W MARKET ST SUITE 110 AKRON OH 44333 747972 false X WWW.CJDFOUNDATION.ORG X 1993 FL TO PROMOTE RESEARCH, EDUCATION, AWARENESS, PATIENT AND FAMILY SUPPORT SERVICES, AND OTHER CHARITABLE PROGRAMS REGARDING CREUTZFELDT-JAKOB DISEASE. 20 20 5 69 0 626556 625651 46464 56912 8323 1395 2968 43898 684311 727856 250000 0 254733 269635 0 80944 332425 299582 587158 819217 97153 -91361 891868 807485 9184 16162 882684 791323 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 251870 58624 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. 250130 250000 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. 42123 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. 25474 ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS AND FAMILY DISCRETIONARY FUND 25474 569597 true true false false false false false false false false true false false false false 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 X DEBORAH R YOBS 8006591991 3610 W MARKET STREET SUITE 110 AKRON OH 44333 STUART YAFFA TREASURER 5.00 X X 0 0 0 MARK GOLDFARB BOARD MEMBER 2.00 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 RUTHIE GEORGE 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 FLORENCE KRANITZ PRESIDENT EM 2.00 X 0 0 0 BRIAN APPLEBY BOARD MEMBER 2.00 X 0 0 0 DEBORAH YOBS PRESIDENT 40.00 X 114979 0 0 114979 1 false false false 76067 70000 479584 625651 CONFERENCE INCOME 541900 56912 56912 56912 1395 1395 13455 13455 13455 13455 43358 76067 14627 28731 28731 7201 5489 1712 1712 727856 58624 43581 150000 150000 100000 100000 114979 66219 26744 22016 132320 76745 30434 25141 22336 12955 5137 4244 8950 8950 25 25 225 225 31204 14791 10510 5903 80601 4070 75905 626 4146 1909 1283 954 2151 2151 2192 2192 EDUCATION & SEMINARS 128484 128484 WEBSITE & DATABASE 16905 13365 3540 BANK SERVICE CHARGES 9226 984 492 7750 ANNUAL FUND 5419 5419 10054 75 4628 5351 819217 569597 168676 80944 187350 251570 118338 95789 4157 2998 1576 2028 28750 25966 3432 2784 555431 432076 21584 20240 891868 807485 9184 16162 9184 16162 X 549667 553340 333017 237983 882684 791323 891868 807485 -91361 X false true X true false X 285398 364010 619472 626556 625651 2521087 285398 364010 619472 626556 625651 2521087 2521087 12347 11763 5722 20323 14850 65005 27731 27731 120592 164330 1054 285976 2899799 64113 0.86940 0.82460 X PART II, LINE 10 VARIOUS 285,976 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 13554 11176 2378 15196 14790 406 2784 X 747972 20116 20116 727856 727856 839333 20116 20116 819217 819217 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 true ITALY GRANTS TO RECIPIENTS 50000 FRANCE GRANTS TO RECIPIENTS 50000 100000 100000 CJD RESEARCH 50000 CHECK CJD RESEARCH 50000 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 ITALY 50,000 0 FRANCE 50,000 0 STRIDES FOR CJD 119425 76067 43358 14627 119425 76067 43358 14627 14627 28731 true CASE WESTERN RESERVE UNIVERSITY 2085 ADELBERT RD CLEVELAND OH 44106 341018992 501C3 50000 CJD RESEARCH COLORADO STATE UNIVERSITY 327 PATHOLOGY BUILDING FORT COLLINS CO 80523 846000545 501C3 50000 CJD RESEARCH UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE UC303 RM 101 SAN DIEGO CA 92093 956006144 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, 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