Creutzfeldt Jakob Disease Foundation Inc
Creutzfeldt Jakob Disease Foundation Inc
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About this organization
Mission
Our mission: To provide support, guidance and information to families of loved ones affected by CJD. To elevate education and awareness in all areas of concern and care of CJD patients and families. To act as strong advocates for increased research funding, food and blood safety and increased national attention on these causes.
About
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 2,200 CALLS AND EMAILS IN 2018, 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 69 FAMILIES AND HOSPICE PROVIDERS. FAMILY CONFERENCE: MORE THAN 150 FAMILY MEMBERS AND 33 PRION DISEASE EXPERTS AND PROFESSIONALS PARTICIPATED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2018. 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 1,350 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 2018, 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 14 TELECONFERENCE SUPPORT GROUPS IN 2018 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.
Interesting data from their 2019 990 filing
The non-profit's mission, as described in the filing, is “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”.
When describing its duties, they were characterized as: “To promote research, education, awareness, patient and family support services, and other charitable programs regarding prion diseases including creutzfeldt-jakob disease.”.
- The non-profit has complied with legal regulations by reporting their state of operation as FL.
- The filing shows that the non-profit's address as of 2019 is 3634 WEST MARKET STREET SUITE 110, AKRON, OH, 44333.
- As of 2019, the non-profit has reported a total of 5 employees on their form.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Has foreign activities.
- Is not a donor-advised fund.
- Is not a private foundation.
- Expenses are between $500,000 and $1,000,000+.
- Revenue is greater than $1,000,000.
- Revenue less expenses is $723,492.
- The compensation of the CEO of the organization is subject to review and approval by an independent body.
- The organization has a written policy that describes how long it will retain documents.
- The organization has 23 independent voting members.
- The organization was formed in 1993.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule B.
- The organization is required to file Schedule O.
- The organization pays $301,849 in salary, compensation, and benefits to its employees.
- The organization pays $63,883 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization has minutes of its meetings.
- The organization has a written whistleblower policy.
- The organization has fundraising events.
- The organization has grants to organizations.
- The organization's financial statements were reviewed by an accountant.