2018-10-26T11:48:48-04:00 2017-12-31 341897853 CRUM & COMPANY 525 N CLEVELAND MASSILLON RD STE 10 AKRON OH 443333332 990 2017-01-01 650404623 CREUTZFELDT-JAKOB DISEASE FOUNDATION INC CREU 8006591991 3610 W MARKET ST SUITE 110 AKRON OH 44333 DEBORAH YOBS PRESIDENT 2127195900 2018-11-15 true KEVIN K CRUM P00255436 3308671222 2018-10-19 98.103.23.93 2018-10-26 10:48:48 CD P 223CB5FFAF71AA1FAA84BF7F051B24F13364AEE4 7F10500C6AA2DB0BB4B0E4862A6B16FAF8B2CC02 2017 2018-06-14 16:35:46Z DEBORAH YOBS 3610 W MARKET ST SUITE 110 AKRON OH 44333 1140527 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 6 160 0 910074 844528 48101 53859 12730 6686 71458 127700 1042363 1032773 204000 195000 0 271261 255221 0 67542 340824 312540 816085 762761 226278 270012 1045907 1312484 29373 22745 1016534 1289739 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 304021 53859 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 1,800 CALLS AND EMAILS IN 2017, 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 120 FAMILY MEMBERS AND 38 PRION DISEASE EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2017. 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 1,300 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 2017, 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 12 TELECONFERENCE SUPPORT GROUPS IN 2017 WITH AN AVERAGE OF 30 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. 232663 195000 RESEARCH GRANTS IN 2017, THE CJD FOUNDATION AWARDED 195,000 IN GRANTS TO 5 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 47 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 35 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. 57375 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 ALABAMA, OHIO, NEW YORK, MICHIGAN, TEXAS, SOUTH CAROLINA, AND PENNSYLVANIA. FUNERAL AND INFECTION CONTROL EDUCATION WAS ALSO PROVIDED IN ALABAMA AND OHIO. ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS AND FAMILY DISCRETIONARY FUND 594059 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 8 0 6 true false false false false false false false false false false X 20 20 true false true false false false false true true false false true true true true true 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 130735 11269 702524 844528 CONFERENCE INCOME 541900 53859 53859 53859 6686 6686 76677 76529 148 148 148 150268 130735 31225 119043 119043 MISCELLANEOUS 541900 8509 8509 8509 1032773 53859 134386 100000 100000 95000 95000 111457 80249 18948 12260 125577 91556 20580 13441 18187 12224 3743 2220 12144 12144 12814 7159 4302 1353 13441 7968 3457 2016 5444 5444 2373 1407 610 356 2629 1559 676 394 FAMILY CONFERENCE 123307 123307 CONTRACT LABOR 51083 27182 15782 8119 PROGRAM EXPENSE 27107 25379 1728 FAMILY FUNDRAISING 7817 7817 54381 21069 13746 19566 762761 594059 101160 67542 206 169 498647 662425 68662 17270 2084 3296 4849 35470 26109 9734 9361 445731 594271 20843 20843 1045907 1312484 11180 4554 18193 18191 29373 22745 X 788603 979739 227931 310000 1016534 1289739 1045907 1312484 270012 3193 X false true X true false X 619472 626556 625651 910074 844528 3626281 619472 626556 625651 910074 844528 3626281 55457 3570824 5722 20323 14850 12730 6686 60311 27731 68342 126700 222773 1054 1054 3910419 53859 0.91320 0.90280 X PART II, LINE 10 VARIOUS 1,054 35470 26109 9361 9361 TENANT SECURITY DEPOSIT 18191 18191 X 1071427 3193 4236 31225 38654 1032773 1032773 798222 4236 31225 35461 762761 762761 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 31,225 SCHEDULE D, PAGE 4, PART XII, LINE 2D STRIDES FOR CJD EXPENSE 31,225 true FRANCE GRANTS TO RECIPIENTS 50000 ITALY GRANTS TO RECIPIENTS 45000 95000 95000 CJD RESEARCH 50000 CHECK CJD RESEARCH 45000 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 FRANCE 50,000 0 ITALY 45,000 0 STRIDES FOR CJD 218998 130735 88263 31225 218998 130735 88263 31225 31225 57038 true UNIVERSITY OF TEXAS HEALTH SCIENCE PO BOX 301418 DALLAS TX 75303 741761309 501C3 50000 CJD RESEARCH CASE WESTERN RESERVE UNIVERSITY 10900 EUCLID AVE CLEVELAND OH 44106 341018992 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, 160 CONTRIBUTED OVER 5,500 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 EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2017. 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 1,300 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 2017, 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 12 TELECONFERENCE SUPPORT GROUPS IN 2017 WITH AN AVERAGE OF 30 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 4 ON JULY 14, 2017, THE CJDF CHANGED THE NAME OF EXECUTIVE DIRECTOR TO PRESIDENT/EXECUTIVE DIRECTOR. ON JULY 14, 2017, THE CJDF ELIMINATED THE PROVISION ALLOWING A PERSON TO HOLD MORE THAN ONE OFFICE. MEMBERSHIP- BYLAWS ARTICLE VI ON MEMBERSHIP HAS BEEN ELIMINATED; THE CJDF HAS NO FORMAL MEMBERS. OPERATIONS- REGARDING EXECUTION OF DOCUMENTS, ON JULY 14, 2017, THE CJDF AMENDED THE BYLAW WHICH PREVIOUSLY REQUIRED CHECKS TO BE SIGNED BY THE TREASURER OR EXECUTIVE DIRECTOR, TO NOW REQUIRE THAT CHECKS BE SIGNED BY AT LEAST ONE OF THE FOLLOWING: PRESIDENT/EXECUTIVE DIRECTOR, TREASURER, SECRETARY, OR PROGRAM DIRECTOR. GOVERNANCE AND OVERSIGHT - THE QUORUM FOR BOARD VOTING WAS CHANGED FROM A MINIMUM OF 5 TO 11 MEMBERS. ONLY ONE, RATHER THAN TWO, OF THE THREE YEARLY BOARD MEETINGS REQUIRES FACE-TO-FACE PARTICIPATION. THE AMENDMENTS ELIMINATED THE PROVISION ALLOWING NOT MORE THAN 1 OR 10%, WHICHEVER IS GREATER, OF COMPENSATED PERSONS TO SERVE ON THE BOARD, AND PROHIBITING COMPENSATED MEMBERS FROM SERVING AS CHAIRPERSON OR TREASURER. THE NEW PROVISION ALLOWS ONLY THE PRESIDENT/EXECUTIVE DIRECTOR TO RECEIVE A SALARY AND PERMITS REIMBURSEMENT FOR EXPENSES OR SPECIFIC PROGRAMS FOR OTHER BOARD MEMBERS. OTHER COMPENSATION TO A BOARD MEMBER REQUIRES APPROVAL BY A MAJORITY OF THE BOARD. CONFLICT OF INTEREST POLICY NOW SPECIFICALLY REFERS TO NOT ONLY MATERIAL, BUT ALSO UNDISCLOSED, CONFLICTS. THE NEW PROVISION ALSO PROVIDES THAT BOARD MEMBERS WILL REVIEW A SEPARATE CONFLICT OF INTEREST STATEMENT AND SIGN A CONFLICT OF INTEREST STATEMENT ANNUALLY. FINANCIAL EXPECTATIONS - THE CONTRIBUTION OF BOARD MEMBERS CAN NOW BE IN THE FORM OF WEALTH, WISDOM AND/OR WORK, AS OPPOSED TO ALL THREE FORMS PREVIOUSLY REFERENCED. BOARD MEMBERS SHOULD CONTRIBUTE FINANCIALLY AND/OR RAISE FUNDS, AS OPPOSED TO THE PREVIOUS PROVISION EXPECTING THEM TO CONTRIBUTE AND RAISE FUNDS. COMMITTEES - THE PREVIOUS STANDARDS LISTED THE FOLLOWING RECOMMENDED STANDING COMMITTEES: EXECUTIVE COMMITTEE, DEVELOPMENT COMMITTEE, ADMINISTRATION, BUDGET AND FINANCE COMMITTEE, AND DIRECTORSHIP COMMITTEE. THE NEW PROVISIONS CURRENTLY PROVIDE FOR THE FOLLOWING RECOMMENDED STANDING COMMITTEES: COMMITTEE ON GOVERNANCE, FINANCE COMMITTEE, FUNDRAISING COMMITTEE, GRANTS COMMITTEE, SCIENTIFIC ADVISORY COMMITTEE. 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 31,225 STRIDES FOR CJD EXPENSE -31,225