2025-10-31T09:25:44-05:00 2024-12-31 341322309 CIUNI & PANICHI INC 25201 CHAGRIN BLVD 200 CLEVELAND OH 441225683 990 2024-01-01 650404623 CREUTZFELDT-JAKOB DISEASE FOUNDATION INC CREU 8006591991 3634 WEST MARKET STREET 110 AKRON OH 44333 DEBORAH YOBS PRESIDENT/EXECUTIVE DIRECTOR 8006591991 2025-10-23 1 0 MICHAEL KLEIN CPA P00359504 2168317171 2025-10-23 2024 2025-03-06 01:10:19Z DEBORAH YOBS 3634 WEST MARKET STREET 110 AKRON OH 44333 5676716 0 X WWW.CJDFOUNDATION.ORG X 1993 FL TO SUPPORT FAMILIES AFFECTED BY PRION DISEASE, RAISE AWARENESS, AND (CONTINUED ON SCHEDULE O) SUPPORT MEDICAL EDUCATION AND RESEARCH. 19 19 6 350 0 0 2770443 2463713 41100 101200 84302 341468 47635 -35724 2943480 2870657 718205 702920 0 0 396748 397492 0 0 89001 426645 765538 1541598 1865950 1401882 1004707 8137536 9188820 127957 47718 8009579 9141102 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. (CONTINUED ON SCHEDULE O) 0 0 503902 THE CJD FOUNDATION'S NATIONWIDE FAMILY SUPPORT PROGRAMS INCLUDE: HELPLINE SUPPORT AND RESOURCES, FAMILY CONFERENCE, FAMILY WORKSHOPS, MONTHLY VIRTUAL SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, CAREGIVER SUPPORT GROUPS, AND REFERRALS TO THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD (TAPCJD). THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR TAPCJD AND 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 2,563 CALLS AND EMAILS IN 2024, PROVIDING INFORMATION AND REFERRALS AND RESPONDING TO QUESTIONS AND CONCERNS FROM FAMILY MEMBERS, (CONTINUED ON SCHEDULE O)MEDICAL PROFESSIONALS, FUNERAL DIRECTORS, AND INFECTION CONTROL SPECIALISTS. WE SENT CAREGIVING BINDERS TO MORE THAN 174 FAMILIES AND HOSPICE PROVIDERS. AT OUR 2024 CJD FOUNDATION FAMILY CONFERENCE, A TOTAL OF 155 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS ATTENDED. 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.SUPPORT GROUPS, WEBINARS AND SPEAKER SERIES: WE HOSTED 43 TELECONFERENCE SUPPORT GROUPS IN 2024. 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. 1007819 702920 0 IN 2024, THE CJD FOUNDATION AWARDED $702,920 IN GRANTS TO 8 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 50 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 94 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. 41571 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 2024, WE PROVIDED MEDICAL EDUCATION:MEDICAL EDUCATION NEUROLOGY GRAND ROUNDS WERE HELD IN: - TEXAS AT DSHS, WHICH INCLUDES STAFF FROM DSHS, HEALTH AND HUMAN SERVICES COMMISSION, LOCAL HEALTH DEPARTMENTS, LOCAL MENTAL HEALTH CENTERS, HOSPITALS, INSTITUTIONS OF HIGHER EDUCATION, AND OTHERS THROUGHOUT TEXAS. - IMED/SALT LAKE VALLEY NEUROLOGY DEPARTMENT (CONTINUED ON SCHEDULE O)- BAYSTATE UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL- CAPE COD FALMOUTH HOSPITAL IN FALMOUTH, MA.FUNERAL EDUCATION PRESENATIONS WERE HELD IN:- INDIANAPOLIS, INDIANAWE ALSO RESPONDED TO REQUESTS FOR INFORMATION FROM 70 MEDICAL PROFESSIONALS VIA OUR HELPLINE, AND MADE INFORMATION AVAILABLE TO MEDICAL, INFECTIOUS DISEASE, HOSPICE AND GENETIC COUNSELING PROFESSIONALS THROUGH OUR WEBSITE, EDUCATIONAL BINDERS, AND ANNUAL CONFERENCE WHICH IS RECORDED AND POSTED ON OUR WEBSITE. 46831 ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS 46831 1600123 1 1 0 1 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 1 1 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 6 0 6 1 0 0 0 0 0 0 0 0 0 0 X 19 19 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 CA CO CT DE FL IL KS MA MD NJ NY OH OR PA VA WA WI WV X X DEBORAH R YOBS 8006591991 3634 W MARKET STREET SUITE 110 AKRON OH 44333 BRIAN APPLEBY BOARD MEMBER 2.00 X 0 0 0 TREVOR BAIERL BOARD MEMBER (THROUGH 2/28/24) 2.00 X 0 0 0 MATT COLLINS BOARD MEMBER 2.00 X 0 0 0 PAMELA FEAR BOARD MEMBER 2.00 X 0 0 0 LAVONNE HALL BOARD MEMBER (THROUGH 2/7/24) 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 PATRICIA MCGILL TREASURER 2.00 X X 0 0 0 KIRSTEN MCGINNIS SECRETARY 2.00 X X 0 0 0 BRENDA MEANEY BOARD MEMBER 2.00 X 0 0 0 DAVE MORRIS BOARD MEMBER 2.00 X 0 0 0 FRANK MYERS BOARD MEMBER 2.00 X 0 0 0 MOLLY NOCERINO BOARD MEMBER (THROUGH 4/30/24) 2.00 X 0 0 0 JOE POHL BOARD MEMBER 2.00 X 0 0 0 MARK ROBERTS BOARD MEMBER 2.00 X 0 0 0 JACOB SCHWISTER BOARD MEMBER 2.00 X 0 0 0 TIM SCHWISTER BOARD MEMBER 2.00 X 0 0 0 NANCY SWEELY BOARD MEMBER 2.00 X 0 0 0 MARIA THACKER-GOETHE BOARD MEMBER 2.00 X 0 0 0 MICHAEL VITANZA BOARD MEMBER (THROUGH 7/10/24) 2.00 X 0 0 0 STUART YAFFA CHAIR 2.00 X X 0 0 0 DEBORAH YOBS PRESIDENT/EXECUTIVE DIRECTOR 40.00 X 111457 0 0 111457 0 0 1 0 0 0 0 743496 75325 1644892 2463713 CONFERENCE INCOME 541900 101200 101200 101200 327506 327506 2767238 2753276 13962 13962 13962 14359 743496 52783 -38424 -38424 MISCELLANEOUS 541900 2700 2700 2700 2870657 431406 0 -24462 200000 200000 502920 502920 111457 87128 15302 9027 252770 197594 34702 20474 3230 3230 30035 23479 4123 2433 16105 16105 12927 12927 109052 62415 31122 15515 22632 12638 9583 411 25759 17898 6007 1854 198620 198620 18918 18918 8914 8914 PROGRAM EXPENSE 297431 297431 DONATION COLLECTION FEE 16005 3043 12962 FAMILY FUNDRAISING 11332 11332 ANNUAL FUND EXPENSE 8817 8817 19026 12850 6176 1865950 1600123 176826 89001 251 300 442999 298503 35054 358775 20067 7583 12613 18621 123997 77763 45637 38069 32126 7531936 8352199 41667 1289 10307 8137536 9188820 18694 38085 77235 32028 0 9633 127957 47718 X 5711402 6797504 2298177 2343598 8009579 9141102 8137536 9188820 1004707 126816 0 X 0 1 X 1 0 X 1732905 2482682 2735803 2770443 2463713 12185546 1732905 2482682 2735803 2770443 2463713 12185546 1198567 10986979 22028 37997 83547 245716 327506 716794 165 10270 88001 46635 0 145071 2700 2700 13050111 166098 0.84190 0.87280 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1865950 1865950 243298 60825 0 0 186581 205311 239784 243298 874974 1312461 19559 0 0 19559 46645 51328 59946 60825 218744 328116 1616994 83782 60000 1640776 0.91300 0.08700 0 0 77763 45637 32126 32126 LEASE LIABILITY - SHORT TERM 9633 9633 X 3577785 126816 554815 681631 2896154 12927 -38424 -25497 2870657 2446262 554815 38424 593239 1853023 12927 12927 1865950 PART X, LINE 2: 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. PART XI, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE -38,424. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE 38,424. 1 EUROPE (INCLUDING ICELAND & GREENLAND) GRANTS TO RECIPIENTS 299804 NORTH AMERICA GRANTS TO RECIPIENTS 203116 0 0 0 0 0 0 502920 0 502920 EUROPE (INCLUDING ICELAND & GREENLAND) CJD RESEARCH 99944 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) CJD RESEARCH 99860 WIRE TRANSFER 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES CJD RESEARCH 3116 WIRE TRANSFER 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES CJD RESEARCH 200000 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CJD RESEARCH 100000 WIRE TRANSFER 0 0 0 0 0 0 0 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 AS UPDATES AND WRITTEN REPORTS ON PROJECTS PROVIDED AT THE FAMILY CONFERENCE. SCHEDULE F, PAGE 1, PART I, LINE 3 SWITZERLAND: $99,944 SPAIN: $99,860 CANADA: $203,116 GERMANY: $100,000 STRIDES FOR CJD 757855 743496 14359 5335 47448 757855 743496 14359 5335 47448 52783 -38424 1 CASE WESTERN RESERVE 109000 EUCLID AVENUE CLEVELAND OH 44106 341018922 501(C)(3) 100000 0 RESEARCH NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES 5601 FISHERS LAND SUITE 2G MSC 9804 BETHESDA MD 208929804 530196960 100000 0 RESEARCH 2 FORM 990, PART I, LINE 1 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 PUBLIC POLICY MAKERS -ANNUAL FAMILY CONFERENCE THAT BRINGS TOGETHER AFFECTED FAMILIES AND PRION DISEASE EXPERTS - SUPPORT GROUPS FOR FAMILIES AFFECTED BY CJD -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, PART VI, SECTION A, LINE 2 JACOB SCHWISTER (BOARD MEMBER) AND TIM SCHWISTER (BOARD MEMBERS) ARE FAMILY. FORM 990, PART VI, SECTION B, 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, PART VI, SECTION B, LINE 12C THE CONFLICT OF INTEREST POLICY IS ENFORCED BY THE BOARD AND BOARD MEMBERS WHO ARE REQUIRED TO DISCLOSE KNOWN CONFLICTS. FORM 990, PART VI, SECTION B, 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, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS AND FINANCIAL STATEMENTS AVAILABLE UPON REQUEST. 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 COUSELING 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 WORKSHIPS, OR FUNDRAISING/AWARENESS-RAISING EVENTS. IN TOTAL, APPROXIMATELY 350 CONTRIBUTED OVER 6,500 HOURS. WITHOUT THE EFFORTS OF THESE VOLUNTEERS, WE COULD NOT HAVE SERVED OUR COMMUNITY WITH THE PROGRAMS WE OFFER. FORM 990, 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 AS UPDATES AND WRITTEN REPORTS PROVIDED AT FAMILY CONFERENCE.