Agenda

Sporadic Prion Disease Meeting –O’Hare Ballroom, Terminals 1-3, Main Level
*This is a workshop for families only
Brian Appleby, MD, Director, National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH
Lori Nusbaum, Program Director, CJD Foundation, Akron, OH
 

Genetic Prion Disease Meeting – Salons 8-10, Main Level
*This workshop is only for families affected by a genetic prion disease
Moderator: Debbie Yobs, President and Executive Director, CJD Foundation
Family Panel: Trevor Baierl, Nicholaus De Maggio, Pamela Fear, Vicki Qualley
Expert Resources:
Michael D. Geschwind, MD, PhD, FANA, FAAN, Professor of Neurology, University of California, San Francisco, San Francisco, CA
Richard Knight, BA, BM BCh, FRCP(E), Chair, CJD Support Network, U.K. and Emeritus Professor of Clinical Neurology, The University of Edinburgh, Edinburgh, Scotland
 

Prion Disease Basics – Grand Ballrooms 1-4
These sessions provide an excellent foundation for Saturday’s scientific presentations.
 

Bereavement Workshop, Grand Ballrooms 1-4
Tessa Garcia McEwen, AM, LCSW, Certified Dementia Practitioner, Certified Grief Educator, The Memory Center, University of Chicago Medicine, Chicago, IL
 

Welcome – Grand Ballrooms 1-4
Debbie Yobs, President and Executive Director, CJD Foundation
 

Opening Remarks and Introduction
Brian Appleby, MD, Director, National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH
 

Keynote Address in Honor of Dr. Pierluigi Gambetti:
Novel Mouse Models of Prion Diseases
Glenn Telling, PhD, Director, Prion Research Center, Colorado State University, Fort Collins, CO
 

CJD Foundation Research Grant Recipient Reports, Group A
Moderator: Joel Watts, PhD, Associate Professor, Department of Biochemistry, University of Toronto, Toronto, Ontario, Canada
 

Understanding the molecular mechanism of spontaneous prion emergence in knock-in mouse models
Surabhi Mehra, PhD, MSc*, Postdoctoral Fellow, Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, Ontario, Canada
 

Bridging the pre-clinical gap for a small brain-penetrant molecule that reducesPrPC levels
Gerold Schmitt-Ulms, PhD*, Professor and Graduate Faculty Member, Department of Laboratory Medicine and Pathology, Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, Ontario, Canada
 

CJD Foundation Research Grant Recipient Reports, Group B
Moderator: Richard Knight, BA, BM BCh, FRCP(E), Chair, CJD Support Network, U.K. and Emeritus Professor of Clinical Neurology, The University of Edinburgh, Edinburgh, Scotland
 

Exploring the efficacy of dominant negative protein-based gene therapy for different prion diseases: in vivo proof-of-concept study
Joaquín Castilla, PhD*, IKERBasque Research Professor, Center for Cooperative Research in Biosciences (CIC bioGUNE), Basque Research and Technology Alliance (BRTA), Derio, Spain
 

Generating cerebral organoids from donors with sporadic Creutzfeldt-Jakob Disease
Arielle Hay, PhD, Postdoctoral Research Fellow, Prion Cell Biology Unit, Laboratory of Neurological Infections and Immunity, Rocky Mountain Laboratories, Division of Intramural Research, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Hamilton, Montana
 

Validation of a non-invasive diagnostic test for prion diseases using tear fluid
Matthias Schmitz, PhD, Dementia Research Unit, Department of Neurology in Göttingen, National Reference Center for TSE and German Center for Neurodegenerative Diseases (DZNE), Göttingen, Germany
 

Research Grant Recipient Reports, Group B Debrief
 

A Multi-Targeted Approach in Search of Prion Disease Therapy
James Mastrianni, MD, PhD, Professor of Neurology, Director, Center for Comprehensive Care and Research on Memory Disorders, University of Chicago, Chicago, IL
 

Moving Roundtables – Grand Ballrooms 1-4
Rotate among tables and sit for informal question and answer with speakers, research grant recipients, and other professionals.
 

Family Consultations (Optional) – O’Hare Ballroom, Terminal 3
Katie Glisic, MA and Meghan Lewis, MA will be available for individual family consultations regarding status of autopsy results and/or the National Prion Disease Pathology Surveillance Center’s autopsy program.
Katie Glisic, MA, Administrative Lead, National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH
Meghan Lewis, MA, Autopsy Specialist, National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH
 

CJD Foundation Report: Programs, Finance, Advocacy, and Strides for CJD – Grand Ballrooms 1-4
Stuart Yaffa, Chair, CJD Foundation Board of Directors
Jacob Schwister, CJD Foundation Board of Directors
Lori Nusbaum, Program Director, CJD Foundation, Akron, OH
 

CJD Foundation Grants Program
Debbie Yobs, President and Executive Director, CJD Foundation
Joel Watts, PhD, Associate Professor, Department of Biochemistry, University of Toronto, Toronto, Ontario, Canada
 

National Prion Disease Pathology Surveillance Center Panel – Grand Ballrooms 1-4
Brian Appleby, MD, Director
Eriton Cunha, PhD, Tissue Lab Scientist
Katie Glisic, MA, Administrative Lead
Meghan Lewis, MA, Autopsy Specialist
 

2025 Centers for Disease Control and Prevention Report
Ryan Maddox, PhD, Epidemiologist, Prion and Public Health Office, Division of High-Consequence Pathogens and Pathology, National Center for Emerging and Zoonotic Infectious Diseases, Atlanta, GA
 

CJD Foundation Family Panel: “My Story, My Mission”
Debbie Yobs (Moderator), Karen Adams, Pat Elliot, Elizabeth Rodriguez, Tim Schwister
 

Drug Development Panel
Kiyoshi Arita, MSc, Project/Product Manager, Research and Development Division, International Clinical Development Department, Nobelpharma Co., Ltd., Tôkyô, Japan
Elizabeth McNeil, MD, MSc, Global Clinical Program Lead in Neurology, Sangamo Therapeutics, Inc., Richmond, CA
Eric Minikel, PhD, Director, Prion Therapeutic Science, Broad Institute of MIT and Harvard, Cambridge, MA
Nina Oberbeck, PhD, Vice President of Translational Sciences, Gate Bioscience, Brisbane, CA
Anne Smith, PhD, Vice President of Clinical Development, Ionis Pharmaceuticals, Inc., Carlsbad, CA