Creutzfeldt-Jakob Disease Foundation Inc

TO SUPPORT FAMILIES AFFECTED BY PRION DISEASE, RAISE AWARENESS, AND SUPPORT MEDICAL EDUCATION AND RESEARCH.

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, CAREGIVER SUPPORT GROUPS, AND SUPPORT AND/OR 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 2,200 CALLS AND EMAILS IN 2023, 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 158 FAMILIES AND HOSPICE PROVIDERS. AT OUR 2023 CJD FOUNDATION FAMILY CONFERENCE, A TOTAL OF 150 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 36 TELECONFERENCE SUPPORT GROUPS IN 2023. 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.

ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS.

IN 2023, THE CJD FOUNDATION AWARDED 718,205 IN GRANTS TO 9 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 45 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 86 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.

THE CJD FOUNDATION HOSTS GRANT ROUND PRESENTATION, INFECTION CONTROL SEMINARS, AND FUNERAL EDUCATION AROUND THE COUNTRY, AT NO CHARGE. OUR MEDICAL EDUCATION PROGRAMS ARE INSTRUCTED BY PRION DISEASE EXPERTS. IN 2023, 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 -BAYSTATE UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL -CAPE COD FALMOUTH HOSPITAL IN FALMOUTH, MA. FUNERAL EDUCATION PRESENATIONS WERE HELD IN: -INDIANAPOLIS, INDIANA WE ALSO RESPONDED TO REQUESTS FOR INFORMATION FROM 60 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.