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Family Conference Recordings

Past Presentations

About the CJD Family Conference

The CJD Foundation’s Family Conference, held annually in Washington, D.C., brings together prion disease experts and families affected by prion disease.

Over two days, attendees meet with other families, share stories, hear from grant recipients about their research, learn more about CJD Foundation programs and government programs, and have opportunities to become advocates for prion disease funding and research.

Save the date for the 2024 Conference taking place July 19-21, 2024.

2023 Conference Clips

2023 Conference Highlights

After several years holding the Family Conference virtually, in 2023 we gathered in person in Washington, DC again. It was so wonderful to see the CJD Community come together again. Here were some of the highlights.

Family Workshops: Friday focused on families, with sessions including Sporadic CJD Workshop, Genetic Prion Disease Workshop, Clinical Prion Disease Basics Information Session, Prion Disease Research Overview, and Bereavement Workshop. The day concluded with a welcome reception to families to meet one another or catch up with friends met in prior years.

Keynote Presentation: Richard Knight, BA, BM BCh, FRCP(E), Chair, CJD Support Network, U.K., gave an overview of the 45 years of CJD History in the keynote address held in honor of Dr. Pierluigi Gambetti.

Research Grant Reports: Thanks to our supporters, the CJD Foundation was fortunate enough to fund nine research grants in 2022, and each of those researchers provided an overview of their work at the conference, followed by Q&A sessions.

Moving Roundtables: In this segment, always a favorite of both families and professionals, families rotate among tables in small groups, and sit for informal Q&A with keynote and other speakers, workshop leaders, and grant recipients.

CDC, NPDPSC, and CJD International Support Alliance Updates: Experts from the Centers for Disease Control and Prevention, National Prion Disease Pathology Surveillance Center and CJD International Support Alliance provided updates on their important work.

Family Panel: We heard directly from three family members whose loved ones had unique experiences with CJD and learned how they are now making a difference in the fight against CJD.

Banquet: At each year’s banquet, we present an overview of the CJD Foundation’s accomplishments and year in review. We are also pleased to recognize some key volunteers and leaders in the prion disease community. Winners of the Strides for CJD fundraising competition present memorial tributes to their loved ones, and other highlights are shared. At the 2023 banquet, we recognized the 30th anniversary of the founding of the CJD Foundation.

Advocacy: Training was provided by Kendall Hussey of Akin, and family members visited Congressional offices to share our community’s key issues, share their family stories, and emphasize the importance of continued funding for Prion Disease surveillance and research.