Creutzfeldt-Jakob Disease Foundation

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 almost 2,000 calls and emails in 2022, 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. The cjd Foundation provides funding and referrals for the tapcjd program. Virtual family conference: during the virtual conferencemore more than 707 family members, prion Disease experts, and professionals participatied in our annual cjd Foundation family conference in 2022 by viewing the live sessions. Close to 11,000 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. Questionaire: the cjd Foundation in collaboration with the national prion Disease pathology sureillance center created a patient questionnaire in 2004. To date more than 1,416 families have completed questionnaires. This enables families to document their loved one's case and provides annoymous data for doctors and scientists on patterns of symptoms, Disease onsest and duration, and more results are complied thorughout the year and shared annually at the cjd Foundation family conference. Support groups, webinars and speaker series: we hosted 30 teleconference support groups in 2022. 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

The cjd Foundation hosts grand rounds presentation, infection control seminars, and funeral education around the country, at no charge. Our medical education programs are instructed by prion Disease experts. In 2022, we provided medical education, funeral program at the virigina funeral director's association. We also responded to requests for information from 80 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.

In 2022, the cjd Foundation awarded 651,433 in grants to 10 researchers selected by our scientific advisory committee, which comprises international prion Disease experts. 36 researchers worldwide applied. Grant recipients present their research at the cjd Foundation's annual family conference. The cjd Foundation has awarded more than 77 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.

Advocacy with political representatives and public policy makers.