Creutzfeldt-Jakob Disease

“Bob kassai marie kassai family stuart yaffa jeffrey yaffa family”

“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.”

“The conflict of interest policy is enforced by the board and board members who are required to disclose known conflicts.”

“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.”

“The organization makes its governing documents and financial statements available upon request.”

“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 -communication of current research and foundation activities via annual conference, website, social media, emails, and family teleconferences -research grant program, with international awardees selected by our scientific advisory committee”

“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 counseling 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 workshops, or fundraising/awareness- raising events. In total, 160 contributed over 5,500 hours. Without the efforts of these volunteers, we could not have served our community with the programs we offer.”

“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.”

“Advocacy with political representatives and public policy makers.”

“Strides for cjd expense 45,484 cost of items sold 3,367 strides for cjd expense -45,484 cost of items sold -3,367”