2022-10-14T15:42:26-04:00 2021-12-31 341897853 CRUM & COMPANY 1640 AKRON PENINSULA RD STE 102 AKRON OH 44313 990 2021-01-01 650404623 CREUTZFELDT-JAKOB DISEASE FOUNDATION INC CREU 8006591991 3634 WEST MARKET STREET SUITE 110 AKRON OH 44333 DEBORAH YOBS PRESIDENT/EXEC. DIR 2127195900 2022-10-01 true DEBORAH YOBS 999009999 KEVIN K CRUM P00255436 3308671222 2022-10-13 2021 2022-09-23 18:48:47Z DEBORAH YOBS 3634 WEST MARKET STREET SUITE 110 AKRON OH 44333 2986611 false X WWW.CJDFOUNDATION.ORG X 1993 FL TO SUPPORT FAMILIES AFFECTED BY PRION DISEASE, RAISE AWARENESS, AND SUPPORT MEDICAL EDUCATION AND RESEARCH. 20 20 5 330 0 1732905 2482682 13290 10508 16481 46338 4631 12105 1767307 2551633 539966 630000 0 310522 299517 0 57844 171148 223065 1021636 1152582 745671 1399051 3622436 5032702 76188 80725 3546248 4951977 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, 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 false false 397404 130000 11343 FAMILY SUPPORT AND OTHER PROGRAMS THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD, HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, AND CAREGIVER SUPPORT GROUPS. THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD: THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD (TAPCJD) 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 MORE THAN 2,300 CALLS AND EMAILS IN 2021, 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 68 FAMILIES AND HOSPICE PROVIDERS. VIRTUAL FAMILY CONFERENCE: DURING THE VIRTUAL CONFERENCE MORE THAN 1,175 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2021 BY VIEWING THE LIVE SESSIONS. CLOSE TO 17,672 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 1,394 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 2021, THE CJD FOUNDATION HOSTED 10 SUPPORT GROUP SESSIONS IN NEW YORK CITY. TELECONFERENCE SUPPORT GROUPS AND SPEAKER SERIES: LN 2021 WE HOSTED 3 BEREAVEMENT SERIES, WITH 5 SESSIONS EACH. EACH SESSION HAD AN AVERAGE 12 FAMILY MEMBERS. WE HOSTED 6 TELECONFERENCE SUPPORT GROUPS IN 2021 WITH AN AVERAGE OF 16 FAMILY MEMBERS PER CALL. WE ALSO HOSTED 8 CAREGIVER SUPPORT GROUPS WITH AN AVERAGE OF 11 CAREGIVING PARTICIPANTS. CALLS 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. 539897 500000 RESEARCH GRANTS IN 2021, THE CJD FOUNDATION AWARDED 500,000 IN GRANTS TO 8 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 43 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 70 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. 21694 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 2021, WE PROVIDED MEDICAL EDUCATION PROGRAMS TO HOSPITALS IN CALIFORNIA, UTAH, NEW YORK, TEXAS AND OHIO. 21414 ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS. 21414 980409 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 CO DE MN MO NJ TX VA WA X X DEBORAH R YOBS 8006591991 3634 W MARKET STREET SUITE 110 AKRON OH 44333 DEBORAH YOBS PRESIDENT/EX 40.00 X 111457 0 984 BRIAN APPLEBY BOARD MEMBER 2.00 X 0 0 0 TREVOR BAIERL 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 JOE POHL 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 CHARLES CASH RESIGNED BOARD MEMBER 2.00 X 0 0 0 111457 984 1 false false false 914788 132466 1435428 10003 2482682 CONFERENCE INCOME 541900 10508 10508 10508 37997 37997 374614 366273 8341 8341 8341 76268 914788 67189 9079 9079 2351 1516 835 835 MISCELLANEOUS 541900 2191 2191 2191 2551633 11343 57608 130000 130000 500000 500000 112441 82478 18817 11146 165793 122687 26527 16579 21283 15750 3405 2128 13447 13447 36157 26756 5785 3616 20150 4470 15373 307 23803 17614 3809 2380 59 59 1711 1711 7484 7484 FAMILY CONFERENCE 35019 35019 PROGRAM EXPENSE 22256 22256 DONATION COLLECTION FEES 17954 17954 ANNUAL FUND 9865 9865 35160 5425 17912 11823 1152582 980409 114329 57844 1391 268 784882 611779 55740 31692 2196 6986 7184 2708 2864 39763 35318 2578 4445 2766082 4370985 2069 1289 3622436 5032702 25878 20525 60200 50310 76188 80725 X 3126248 4531977 420000 420000 3546248 4951977 3622436 5032702 X 1399051 6678 X false true X true false X 844528 1511893 1552666 1732905 2482682 8124674 844528 1511893 1552666 1732905 2482682 8124674 36085 8088589 6686 7808 16398 22028 37997 90917 126700 51818 41225 165 10270 230178 8445769 188448 0.95770 0.94320 X PART II, LINE 10 VARIOUS 0 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 19559 19559 1096254 1115813 186581 46645 170094 179351 186581 536026 804039 22547 21013 19559 63119 42524 44838 46645 134007 201011 SCHEDULE C, PART II-A ORGANIZATION MADE ITS 501(H) ELECTION IN 2019. 39763 35318 4445 4445 X 2627016 6678 68705 75383 2551633 2551633 1221287 68705 68705 1152582 1152582 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 67,189 COST OF ITEMS SOLD 1,516 SCHEDULE D, PAGE 4, PART XII, LINE 2D STRIDES FOR CJD EXPENSE 67,189 COST OF ITEMS SOLD 1,516 true ITALY GRANTS TO RECIPIENTS 200000 CANADA GRANTS TO RECIPIENTS 200000 GERMANY GRANTS TO RECIPIENTS 50000 UNITED KINGDOM GRANTS TO RECIPIENTS 50000 500000 500000 CJD RESEARCH 200000 WIRE TRANSFER CJD RESEARCH 200000 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 AND WRITTEN REPORTS ON PROJECTS PROVIDED AT THE FAMILY CONFERENCE. SCHEDULE F, PAGE 1, PART I, LINE 3 ITALY 200,000 0 CANADA 200,000 0 GERMANY 50,000 0 UNITED KINGDOM 50,000 0 STRIDES FOR CJD 579650 503382 76268 67189 579650 503382 76268 67189 67189 9079 true CASE WESTERN RESERVE UNIVERSITY 10900 EUCLID AVENUE CLEVELAND OH 44106 341018922 501C3 130000 TELENEUROLOGY ASSESS 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 AND WRITTEN REPORTS ON PROJECTS 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, 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, 330 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: THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD, HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, AND CAREGIVER SUPPORT GROUPS. THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD: THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD (TAPCJD) 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 MORE THAN 2,300 CALLS AND EMAILS IN 2021, 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 68 FAMILIES AND HOSPICE PROVIDERS. VIRTUAL FAMILY CONFERENCE: DURING THE VIRTUAL CONFERENCE MORE THAN 1,175 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2021 BY VIEWING THE LIVE SESSIONS. CLOSE TO 17,672 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 1,394 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 2021, THE CJD FOUNDATION HOSTED 10 SUPPORT GROUP SESSIONS IN NEW YORK CITY. TELECONFERENCE SUPPORT GROUPS AND SPEAKER SERIES: LN 2021 WE HOSTED 3 BEREAVEMENT SERIES, WITH 5 SESSIONS EACH. EACH SESSION HAD AN AVERAGE 12 FAMILY MEMBERS. WE HOSTED 6 TELECONFERENCE SUPPORT GROUPS IN 2021 WITH AN AVERAGE OF 16 FAMILY MEMBERS PER CALL. WE ALSO HOSTED 8 CAREGIVER SUPPORT GROUPS WITH AN AVERAGE OF 11 CAREGIVING PARTICIPANTS. CALLS 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 17 MINNESOTA, MISSOURI, NEW JERSEY, TEXAS, 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 67,189 COST OF ITEMS SOLD 1,516 STRIDES FOR CJD EXPENSE -67,189 COST OF ITEMS SOLD -1,516 ORGANIZATION MADE ITS 501(H) ELECTION IN 2019.