Each year the Family Conference gathers researchers, medical professionals and families in person in Washington, DC. Here are some of the highlights.

Family Workshops: Friday focuses 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 concludes with a welcome reception to families to meet one another or catch up with friends met in prior years.

Keynote Presentation: In 2024, Simon Mead, BM BCh, FRCP, PhD, Clinical Professor, MRC Prion Unit at UC London, Institute of Prion Diseases, London, England, presented the Keynote Address in Honor of Dr. Pierluigi Gambetti: Can Genetics Help in the Fight Against CJD?

Research Grant Reports: Thanks to our supporters, the CJD Foundation funds many research grants each year, 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 and NPDPSCUpdates: Experts from the Centers for Disease Control and Prevention and National Prion Disease Pathology Surveillance Center  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.

Advocacy: Training is provided by Akin Gump Strauss Hauer & Feld, LLP, Washington, D.C. Family members can elect to visit 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.