- TOLL-FREE HELPLINE: 1-800-659-1991
- CONTACT US
- Supporting Families Affected by Prion Disease
The CJD Foundation’s Family Conference, held annually, 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 2026 Conference taking place July 2026 in Chicago, IL.
Each year the Family Conference gathers researchers, medical professionals and families in person. 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 2025, Glenn Telling, PhD, presented the Keynote Address in Honor of Dr. Pierluigi Gambetti: Novel Mouse Models of Prion Diseases
Research Grant Reports: Thanks to our supporters, the CJD Foundation funds many research grants each year, and each of those researchers provides 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 NPDPSC Updates: Experts from the Centers for Disease Control and Prevention and National Prion Disease Pathology Surveillance Center provide updates on their important work.
Family Panel: We hear directly from family members whose loved ones had unique experiences with CJD and learn 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 also recognize 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.
Drug Development Updates: New to 2025, we hosted a panel discussion with five companies that are developing drug therapies to give updates.
Brian Appleby, MD, Director, NPDPSC, Case Western Reserve University School of Medicine, Cleveland, OH
Joel Watts, PhD, Associate Professor, Department of Biochemistry, University of Toronto, Toronto, Ontario, Canada
Download Presentation: Prion Disease Basics – Research
Tessa Garcia McEwen, AM, LCSW, Certified Dementia Practitioner, Certified Grief Educator, The Memory Center, University of Chicago Medicine, Chicago, IL
Download Presentation: Bereavement Workshop
Glenn Telling, PhD, Director, Prion Research Center, Colorado State University, Fort Collins, CO
Download Keynote Address in Honor of Dr. Pierluigi Gambetti: Novel Mouse Models of Prion Diseases
Elena De Cecco, PhD, Senior Researcher, University of Zürich, Zürich, Switzerland
Download Presentation: “Investigation of Glycoprotein Nonmetastatic Melanoma protein B (GPNMB) as potential therapeutic target in Prion Diseases”
Qingzhong Kong, PhD, Associate Professor of Pathology & Neurology & Assistant Director, National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH
Download Presentation: “Development of ADAM8-based Gene Therapy for CJD”
Surabhi Mehra, PhD, MSc, Postdoctoral Fellow, Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, Ontario, Canada
Download Presentation: “Understanding the molecular mechanism of spontaneous prion emergence in knock-in mouse models”
Gerold Schmitt-Ulms, PhD, Professor & Graduate Faculty Member, Department of Laboaratory Medicine & Pathology, Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, Ontario, Canada
Download Presentation: “Bridging the pre-clinical gap for a small brain-penetrant molecule that reduces PrPC levels”
Joaquín Castilla, PhD, IKERBasque Research Professor, Center for Cooperative Research in Biosciences (CIC bioGUNE), Basque Research & Technology Alliance (BRTA), Derio, Spain
Download Presentation: “Exploring the efficacy of dominant negative protein-based gene therapy for different prion diseases: in vivo proof-of-concept study”
Arielle Hay, PhD, Postdoctoral Research Fellow, Prion Cell Biology Unit, Laboratory of Neurological Infections & Immunity, Rocky Mountain Laboratories, Division of Intramural Research, NIAID, NIH, Hamilton, MT
Download Presentation: “Generating cerebral organoids from donors with sporadic Creutzfeldt-Jakob Disease”
Matthias Schmitz, PhD, Dementia Research Unit, Department of Neurology in Göttingen, National Reference Center for TSE & German Center for Neurodegenerative Diseases (DZNE), Göttingen, Germany
Download Presentation: “Validation of a non-invasive diagnostic test for prion diseases using tear fluid”
James Mastrianni, MD, PhD, Professor of Neurology, Director, Center for Comprehensive Care & Research on Memory Disorders, University of Chicago, Chicago, IL
Download Presentation: A Multi-Targeted Approach in Search of Prion Disease Therapy
Stuart Yaffa, Chair, CJD Foundation Board of Directors
Jacob Schwister, CJD Foundation Board of Directors
Download Presentation: CJD Foundation Report: Programs, Finance, Advocacy, & Strides for CJD
Debbie Yobs, President & Executive Director, CJD Foundation
Joel Watts, PhD, Associate Professor, Department of Biochemistry, University of Toronto, Toronto, Ontario, Canada
Download Presentation: CJD Foundation Grants Program
Brian Appleby, MD, Director
Eriton Cunha, PhD, Tissue Lab Scientist
Katie Glisic, MA, Administrative Lead
Meghan Lewis, MA, Autopsy Specialist
Gabriella DelPrete, Research Assistant II-Tissue Coordinator
Download Presentation: National Prion Disease Pathology Surveillance Center Panel
Ryan Maddox, PhD, Epidemiologist, Prion & Public Health Office, Division of High- Consequence Pathogens & Pathology, National Center for Emerging & Zoonotic Infectious Diseases, Atlanta, GA
Download Presentation: 2025 Centers for Disease Control & Prevention Report
Debbie Yobs (Moderator)
Karen Adams
Pat Elliott
Elizabeth Rodriguez
Tim Schwister
CJD Foundation Family Panel: “My Story, My Mission”
Moderator: Brian Appleby, MD, Director, NPDPSC, Case Western Reserve University School of Medicine, Cleveland, OH
Kiyoshi Arita, MSc, Project/Product Manager, Research & Development Division, International Clinical Development Department, Nobelpharma Co., Ltd., Tôkyô, Japan
Elizabeth McNeil, MD, MSc, Vice President & Global Clinical Program Lead in Neurology, Sangamo Therapeutics, Inc., Richmond, CA
Eric Minikel, PhD, Director, Prion Therapeutic Science, Broad Institute of MIT & Harvard, Cambridge, MANina Oberbeck, PhD, Vice President of Translational Sciences, Gate Bioscience, Brisbane, CA
Anne Smith, PhD, Vice President of Clinical Development, Ionis Pharmaceuticals, Inc., Carlsbad, CA
Drug Development Panel
Download Presentation: Nobelpharma Co., Ltd.
Download Presentation: Ionis Pharmaceuticals, Inc.
This website was made possible by a generous donation from Cookie Stivison, in memory of her husband Tom Stivison, and a grant from the Centers for Disease Control and Prevention.
