Creutzfeldt-Jakob Disease Foundation Inc

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

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.

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.

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.

ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS.