CREUTZFELDT-JAKOB DISEASE FOUNDATION INC
3634 WEST MARKET STREET SUITE 110, AKRON, OH 44333 www.cjdfoundation.org

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Organizations Filed Purposes: 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, 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 -CO

TO PROMOTE RESEARCH, EDUCATION, AWARENESS, PATIENT AND FAMILY SUPPORT SERVICES, AND OTHER CHARITABLE PROGRAMS REGARDING PRION DISEASES INCLUDING CREUTZFELDT-JAKOB DISEASE.

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 1,700 CALLS AND EMAILS IN 2019, 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 79 FAMILIES AND HOSPICE PROVIDERS. FAMILY CONFERENCE: MORE THAN 150 FAMILY MEMBERS AND 30 PRION DISEASE EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2019. 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 1,376 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 2019, THE CJD FOUNDATION HOSTED 10 SUPPORT GROUP SESSIONS IN NEW YORK CITY, AS WELL AS HOSTING FAMILY WORKSHOPS IN 3 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 3 TELECONFERENCE SUPPORT GROUPS IN 2019 WITH AN AVERAGE OF 47 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.

RESEARCH GRANTS IN 2019, THE CJD FOUNDATION AWARDED 348,685 IN GRANTS TO 7 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 40 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 51 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 2019, WE PROVIDED MEDICAL EDUCATION PROGRAMS TO HOSPITALS IN NEW YORK, NEW JERSEY, WASHINGTON AND PENNSYLVANIA. FUNERAL AND INFECTION CONTROL EDUCATION WAS ALSO PROVIDED IN KENTUCKY, OREGON AND PENNSYLVANIA.

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