2021-08-06T09:15:05-05:00 2020-12-31 341897853 CRUM & COMPANY 1640 AKRON PENINSULA RD STE 102 AKRON OH 44313 990 2020-01-01 650404623 CREUTZFELDT-JAKOB DISEASE FOUNDATION INC CREU 8006591991 3634 WEST MARKET STREET SUITE 110 AKRON OH 44333 DEBORAH YOBS PRESIDENT/EXEC. DIR 2127195900 2021-08-15 true DEBORAH YOBS 999009999 KEVIN K CRUM P00255436 3308671222 2021-07-30 2020 2022-09-23 18:48:47Z DEBORAH YOBS 3634 WEST MARKET STREET SUITE 110 AKRON OH 44333 2298762 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 5 150 0 1552666 1732905 56825 13290 15537 16481 44942 4631 1669970 1767307 348685 539966 0 279390 310522 0 52751 334994 171148 963069 1021636 706901 745671 2749540 3622436 11874 76188 2737666 3546248 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, SUPPORT MEDICAL EDUCATION, AND FUND RESEARCH. WE CARRY OUT THIS MISSION THROUGH: -FAMILY SUPPORT INCLUDING A 7-DAY HELPLINE, REFERRALS, SUPPORT GROUPS, AND TELECONFERENCE SPEAKER SERIES -EDUCATION AND INFORMATION FOR FAMILIES, CAREGIVERS, MEDICAL PROFESSIONALS, AND FUNERAL PROFESSIONALS -ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS -ANNUAL FAMILY CONFERENCE THAT BRINGS TOGETHER AFFECTED FAMILIES AND PRION DISEASE EXPERTS -FAMILY WORKSHOPS HELD AROUND THE COUNTRY -COLLABORATION WITH SCIENTISTS, CLINICIANS, MEDICAL CENTERS, HEALTH AUTHORITIES, PROFESSIONAL ORGANIZATIONS, AND INTERNATIONAL PATIENT ASSOCIATIONS -CO false false 244528 16756 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,SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, AND CAREGIVER SUPPORT GROUPS. HELPLINE SUPPORT: THE CJD FOUNDATION RESPONDED TO MORE THAN 1,700 CALLS AND EMAILS IN 2020, 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 63 FAMILIES AND HOSPICE PROVIDERS. VIRTUAL FAMILY CONFERENCE: DURING THE VIRTUAL CONFERENCE MORE THAN 300 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2020 BY VIEWING THE LIVE SESSIONS. CLOSE TO 2,000 VIEWED THE SESSIONS ONLINE DURING THE YEAR. 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. QUESTIONNAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SURVEILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,383 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 2020, THE CJD FOUNDATION HOSTED 10 SUPPORT GROUP SESSIONS IN NEW YORK CITY, AS WELL AS HOSTING FAMILY WORKSHOPS IN 1 CITY. 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: LN 2020 WE HOSTED 3 BEREAVEMENT SERIES, WITH 5 SESSIONS EACH. EACH SESSION HAD AN AVERAGE 12 FAMILY MEMBERS. WE HOSTED 4 TELECONFERENCE SUPPORT GROUPS IN 2020 WITH AN AVERAGE OF 33 FAMILY MEMBERS PER CALL. WE ALSO HOSTED 6 CAREGIVER SUPPORT GROUPS WITH AN AVERAGE OF 14 CAREGIVING PARTICIPANTS. 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. 577667 539966 RESEARCH GRANTS IN 2020, THE CJD FOUNDATION AWARDED 539,966 IN GRANTS TO 9 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 40 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 60 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. 39577 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 2020, WE PROVIDED MEDICAL EDUCATION PROGRAMS TO HOSPITALS IN NEW YORK. FUNERAL AND INFECTION CONTROL EDUCATION WAS ALSO PROVIDED IN ILLINOIS. ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS. 861772 true true false true 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 7 0 5 true false false 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 true true true false false OH FL NY CT CA IL MA MD PA WI WV X DEBORAH R YOBS 8006591991 3634 W MARKET STREET SUITE 110 AKRON OH 44333 DEBORAH YOBS PRESIDENT/EX 40.00 X 111457 0 918 BRIAN APPLEBY BOARD MEMBER 2.00 X 0 0 0 TREVOR BAIERL BOARD MEMBER 2.00 X 0 0 0 CHARLES CASH BOARD MEMBER 2.00 X 0 0 0 PAMELA FEAR BOARD MEMBER 2.00 X 0 0 0 LAVONNE HALL BOARD MEMBER 2.00 X 0 0 0 CLARENCE HUNTER BOARD MEMBER 2.00 X 0 0 0 AMANDA BAXLEY KALINSKY 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 MAYRA LICHTER CHAIRMAN 2.00 X X 0 0 0 PATRICIA MCGILL SECRETARY 3.00 X X 0 0 0 DAVE MORRIS BOARD MEMBER 2.00 X 0 0 0 MOLLY NOCERINO BOARD MEMBER 2.00 X 0 0 0 VERONICA OBERDORF BOARD MEMBER 2.00 X 0 0 0 TIM SCHWISTER BOARD MEMBER 2.00 X 0 0 0 DEANA SIMPSON BOARD MEMBER 2.00 X 0 0 0 MARIA THACKER-GOETHE BOARD MEMBER 2.00 X 0 0 0 MICHAEL VITANZA BOARD MEMBER 2.00 X 0 0 0 JEFFREY YAFFA BOARD MEMBER 2.00 X 0 0 0 STUART YAFFA TREASURER 5.00 X X 0 0 0 111457 918 1 false false false 450902 70272 1211731 1732905 CONFERENCE INCOME 541900 13290 13290 13290 22028 22028 475537 481084 -5547 -5547 -5547 49104 450902 49514 -410 -410 4323 857 3466 3466 MISCELLANEOUS 541900 1575 1575 1575 1767307 16756 17646 430328 430328 109638 109638 112375 80910 21351 10114 175016 126012 32683 16321 23131 16654 4395 2082 12420 12420 11853 5376 6167 310 20336 14642 3864 1830 43 43 2393 2393 7903 7903 PROGRAM EXPENSE 32379 32379 FAMILY CONFERENCE 28463 28463 ANNUAL FUND 10866 10866 CONTRACT LABOR 9352 6733 1777 842 35140 10637 14117 10386 1021636 861772 107113 52751 1337 1391 389138 784882 65360 55740 3162 6142 6986 3047 2708 36184 33606 4257 2578 2275364 2766082 1733 2069 2749540 3622436 11874 25878 50310 11874 76188 X 2382666 3126248 355000 420000 2737666 3546248 2749540 3622436 X 745671 62911 X false true X true false X 910074 844528 1511893 1552666 1732905 6552066 910074 844528 1511893 1552666 1732905 6552066 38661 6513405 12730 6686 7808 16398 22028 65650 68342 126700 51818 41225 165 288250 6905966 175589 0.94320 0.91900 X PART II, LINE 10 VARIOUS 0 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 21013 21013 1022493 1043506 179351 44838 170094 179351 349445 524168 22547 21013 43560 42524 44838 87362 131043 SCHEDULE C, PART II-A ORGANIZATION MADE ITS 501(H) ELECTION IN 2019. 36184 33606 2578 2578 X 1885137 62911 4548 50371 117830 1767307 1767307 1076555 4548 50371 54919 1021636 1021636 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 49,514 COST OF ITEMS SOLD 857 SCHEDULE D, PAGE 4, PART XII, LINE 2D STRIDES FOR CJD EXPENSE 49,514 COST OF ITEMS SOLD 857 true BRAZIL GRANTS TO RECIPIENTS 9638 CANADA GRANTS TO RECIPIENTS 50000 ITALY GRANTS TO RECIPIENTS 50000 109638 109638 CJD RESEARCH 9638 WIRE TRANSFER CJD RESEARCH 50000 WIRE TRANSFER CJD RESEARCH 50000 WIRE TRANSFER 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 BRAZIL 9,638 0 CANADA 50,000 0 ITALY 50,000 0 STRIDES FOR CJD 500006 450902 49104 49514 500006 450902 49104 49514 49514 -410 true BROAD INSTITUTE OF MIT & HARVARD 415 MAIN STREET CAMBRIDGE MA 02142 263428781 501C3 99905 CJD RESEARCH CASE WESTERN RESERVE UNIVERSITY 10900 EUCLID AVENUE CLEVELAND OH 44106 341018922 501C3 100000 CJD RESEARCH COLORADO STATE UNIVERSITY 555 SOUTH HOWES STREET FORT COLLINS CO 80523 846000545 GOV 50000 CJD RESEARCH UNIVERSITY OF TEXAS HEALTH SCIENCES 7000 FANNIN STREET HOUSTON TX 77030 741761309 GOV 100000 CJD RESEARCH WASHINGTON UNIVERSITY ONE BROOKINGS DRIVE ST LOUIS MO 63130 430653611 501C3 50000 CJD RESEARCH ROCKY MOUNTAIN LABORATORIES NIHNAI 9000 ROCKVILLE PIKE BLDG 31 RM B1B5 BETHSEDA MD 20892 520858115 GOV 30423 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, SUPPORT MEDICAL EDUCATION, AND FUND RESEARCH. WE CARRY OUT THIS MISSION THROUGH: -FAMILY SUPPORT INCLUDING A 7-DAY HELPLINE, REFERRALS, SUPPORT GROUPS, AND TELECONFERENCE SPEAKER SERIES -EDUCATION AND INFORMATION FOR FAMILIES, CAREGIVERS, MEDICAL PROFESSIONALS, AND FUNERAL PROFESSIONALS -ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS -ANNUAL FAMILY CONFERENCE THAT BRINGS TOGETHER AFFECTED FAMILIES AND PRION DISEASE EXPERTS -FAMILY WORKSHOPS HELD AROUND THE COUNTRY -COLLABORATION WITH SCIENTISTS, CLINICIANS, MEDICAL CENTERS, HEALTH AUTHORITIES, PROFESSIONAL ORGANIZATIONS, AND INTERNATIONAL PATIENT ASSOCIATIONS -COMMUNICATION OF CURRENT RESEARCH AND FOUNDATION ACTIVITIES VIA ANNUAL CONFERENCE, WEBSITE, SOCIAL MEDIA, EMAILS, AND FAMILY TELECONFERENCES -RESEARCH GRANT PROGRAM, WITH INTERNATIONAL AWARDEES SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE FORM 990, PAGE 1, PART I, LINE 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, 150 CONTRIBUTED OVER 6,000 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 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,SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, AND CAREGIVER SUPPORT GROUPS. HELPLINE SUPPORT: THE CJD FOUNDATION RESPONDED TO MORE THAN 1,700 CALLS AND EMAILS IN 2020, 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 63 FAMILIES AND HOSPICE PROVIDERS. VIRTUAL FAMILY CONFERENCE: DURING THE VIRTUAL CONFERENCE MORE THAN 300 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2020 BY VIEWING THE LIVE SESSIONS. CLOSE TO 2,000 VIEWED THE SESSIONS ONLINE DURING THE YEAR. 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. QUESTIONNAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SURVEILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,383 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 2020, THE CJD FOUNDATION HOSTED 10 SUPPORT GROUP SESSIONS IN NEW YORK CITY, AS WELL AS HOSTING FAMILY WORKSHOPS IN 1 CITY. 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: LN 2020 WE HOSTED 3 BEREAVEMENT SERIES, WITH 5 SESSIONS EACH. EACH SESSION HAD AN AVERAGE 12 FAMILY MEMBERS. WE HOSTED 4 TELECONFERENCE SUPPORT GROUPS IN 2020 WITH AN AVERAGE OF 33 FAMILY MEMBERS PER CALL. WE ALSO HOSTED 6 CAREGIVER SUPPORT GROUPS WITH AN AVERAGE OF 14 CAREGIVING PARTICIPANTS. 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. FORM 990, PAGE 6, PART VI, LINE 2 STUART YAFFA JEFFREY YAFFA TREASURER 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 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS AND FINANCIAL STATEMENTS AVAILABLE UPON REQUEST. FORM 990, PART XI, LINE 9 STRIDES FOR CJD EXPENSE 49,514 COST OF ITEMS SOLD 857 STRIDES FOR CJD EXPENSE -49,514 COST OF ITEMS SOLD -857 ORGANIZATION MADE ITS 501(H) ELECTION IN 2019.