Agenda

Genetic Prion Disease Workshop Part 1 – Salons 8-10, Main Level
Short discussions with speakers regarding genetic counseling, testing, caregiving, treatment development, and studies.
This workshop is for families affected by a genetic prion disease only.
Brian Appleby, MD, Director, National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH
Amanda Kalinsky, Family Member
Eric Minikel, PhD, Director, Prion Therapeutic Science, Broad Institute of MIT and Harvard, Cambridge, MA
Krista Savage, MS, CGC, Grey Genetics
Other speaker to be named

Genetic Prion Disease Workshop Part 2 – Salons 8-10, Main Level
This workshop is for families affected by a genetic prion disease only.
Debbie Yobs, President and Executive Director, CJD Foundation
Other speaker to be named

Sporadic Prion Disease Workshop – O’Hare Ballroom, Terminals 1-3, Main Level
This workshop is 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

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

Keynote Address in Honor of Dr. Pierluigi Gambetti
Brian Appleby, MD, Director, National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH

CJD Foundation Research Grant Recipient Reports, Group A
Moderator: Jason Bartz, PhD, Chair and Professor, Department of Medical Microbiology and Immunology, Creighton University School of Medicine, Omaha, NE

Refined transgenetic approaches to investigate selective adaptation of human prions during intracranial and peripheral transmissions
Alyssa Block, PhD, Postdoctoral Fellow, Prion Research Center, Colorado State University, Fort Collins, CO

Characterization of synaptic abnormalities in iPSC-derived neurons from E200K carriers
Jose Andres Alepuz Guillen, PhD, Postdoctoral Researcher, Chobanian and Avedisian School of Medicine, Boston University, Boston, MA

Engineering human cells to propagate fluorescent prions for live monitoring of prion infection and high-resolution in situ prion structure determination
Ellie Hanzi, Imperial College London, England

Higher-resolution visualization of prion fibrils in neurons and extracellular vesicles using state-of-the-art Cryo-TEM and FIB-SEM imaging
Jakub Soukup, PhD, Rocky Mountain Laboratories, Division of Intramural Research, National Institute of Allergy and Infectious Diseases, National Institutes of Health

Engineered biosensors for improved prion detection
Joel Watts, PhD, Associate Professor, Department of Biochemistry, University of Toronto, Toronto, Ontario, Canada

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

Investigating prion protein seeding activity in non-prion disease dementia
Ignazio Cali, PhD, Department of Medicine and Surgery, University Kore of Enna, Enna, Sicily, Italy and Associate Director, National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH

Assessing retinal function as a potential early biomarker for Creutzfeldt-Jakob Disease (CJD)
Dr. Pei Ying Lee, Department of Optometry and Vision Sciences, The University of Melbourne, Melbourne, Victoria, Australia

Assessing efficacy of a PrP-lowering Molecular Gate as a therapeutic for prion disease
Nina Oberbeck, PhD, Vice President of Translational Sciences, Gate Bioscience, Brisbane, CA

Multi-center assessment of olfactory swab procedure performed by non-otolaryngologists for improving and simplifying human prion disease diagnosis
Gianluigi Zanusso, MD, PhD, Associate Professor, Department of
Neuroscience, Biomedicine and Movement Sciences, University of Verona, Verona, Italy

Research Grant Recipient Reports, Group B Debrief

To Come

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
National Prion Disease Pathology Surveillance Center staff will be
available for individual family consultations regarding status of autopsy results and/or the NPDPSC’s autopsy program.

CJD Foundation Report: Programs, Finance, Advocacy, and Strides for CJD – Grand Ballrooms 1-4

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

Question and Answer

Break – Grand Ballrooms 1-2, Foyer

2026 Centers for Disease Control and Prevention Report
Invited to Speak: 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”
Moderator: Debbie Yobs, President and Executive Director, CJD Foundation 
Nikki Bland, Denise Chainey, Jeanne Cole, Shannon Romano, Mike Vitanza

Drug Development Panel
Moderator: Brian Appleby, MD, Director, National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH
Kiyoshi Arita, MSc, Project/Product Manager, Research and Development Division, International Clinical Development Department, Nobelpharma Co., Ltd., Tôkyô, Japan
Andreja Avbersek, MD, Executive Medical Director, Regeneron, Tarrytown, NY
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

Moving Roundtables with Drug Development Panel – Grand Ballrooms 1-2, Foyer