AUSTRALIA
Professor Steven Collins
Neurologist – Scientist
Director, Australian National Creutzfeldt-Jakob Disease Registry (ANCJDR)
Professor/Senior Principal Research Fellow in the Department of Medicine, the University of Melbourne
Clinical Lead, Dementia Mission and Member, Clinical Governance Committee, The Florey
Head, Mitochondrial & Autoimmune Neurological Disorders diagnostic laboratory, Department of Clinical Neurosciences and Neurological Research, St Vincent’s Hospital, Melbourne
Medical Director, CJD Support Group Network Australia
Professor Simon Hawke
Prion Disease Group, University of Sydney
Jennifer Cooke
Journalist and author
Professor Andrew Hill
Professor and Deputy Vice-Chancellor Research & Impact, Victoria University, Melbourne, Australia
Dr Debra Scott
Palliative Care and Patient Care advisor to the CJD Support Group Network Australia
Dr Sarah Holper
Consultant Neurologist, The Royal Melbourne Hospital
Research Fellow, Australian National CJD Registry, The Florey
PhD Student, WEHI
Assistant Medical Director, CJD Support Group Network Australia
AUSTRIA
Ellen Gelpi, MD, PhD, EFN
Senior Neuropathologist – Division of Neuropathology and Neurochemistry of the Department of Neurology, Medical University of Vienna
BELGIUM
Professor Patrick Cras
Professor of Neurology- Department Chair of Neurology Afdeling Neurologie, Antwerp University Hospital
BRAZIL
Prof. Dr. Tuane Vieira
Professora Adjunta – Laboratório de Termodinâmica de Proteínas e Estruturas Virais Gregorio Weber
Instituto de Bioquímica Médica Leopoldo de Meis, Universidade Federal do Rio de Janeiro
CANADA
Dr. Neil Cashman
Professor of Medicine (Neurology) at the University of British Columbia
Co-founder and CSO of ProMIS Neuroscience
Dr Kevin Keough
Professor Emeritus of Biochemistry at Memorial University of Newfoundland and Principal of Kevin Keough Consulting Incorporated
Dr. Valerie Sim, MD, FRCPC
Neurologist and Associate Professor, Division of Neurology, University of Alberta
Prion scientist, Centre for Prions and Protein Folding Diseases, University of Alberta
Gerard H. Jansen, MD FRCPC
Associate Professor of Neuropathology and Reference Neuropathologist National CJD Laboratory at the University of Ottawa
Neuropathologist at the Eastern Ontario Regional Laboratory Association
CHINA
Dr. Qi Shi, MD, PhD, Professor of Virology
Director, CJD Surveillance Center, Department of Prion Disease, Institute for Viral Disease Control and Prevention (IVDC), China CDC
CZECH REPUBLIC
Radoslav Matej, MD, PhD.
Professor of Pathology and Chair, Third Faculty of Medicine, Charles University
Department of Pathology and Molecular Medicine , National Reference Laboratory for Diaognosis of Human TSE/CJD
Robert Rusina MUDr PhD
Head of Neurology, CJD Reference Centre
FRANCE
Dr. Jean-Phillippe Brandel
Cellule Nationale de référence des maladies de Creutzfeldt-Jakob
Groupe Hospitalier Pitié-Salpêtrière
GERMANY
Professor Dr. Inga Zerr, MD
Head, National Reference Center for Human Prion Diseases and
Dementia Research Unit, Department of Neurology, Georgia August University, Göttingen
Dr. Peter Hermann, MD
German National Reference Center for Transmissible Spongiform Encephalopathies (NRZ-TSE)
Department of Neurology
University Medical Center Göttingen
GREECE
Sokratis G. Papageorgiou
Assoc. Prof of Neurology and Neuropsychology
Medical School, National and Kapodistrian University of Athens
1st University Department of Neurology
“AEGINITEIO” University Hospital
INDIA
Dr Annu Aggarwal, MD, DNB (Neurology), MRCP (UK)
Alzheimer and Memory Clinic, Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute
ISRAEL
Ruth Gabizon, PhD
Department of Neurology, Hadassah University Hospital
ITALY
Professor Gianluigi Forloni
Associate Professor Gianluigi Zanusso
Neurology and Movement Department, University of Verona, Italy
Alberto Bizzi, MD
Chief, Neuroradiology Unit, Humanitas Research Hospital, Lombardia, Italy
Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy
JAPAN
Hidehiro Mizusawa, MD, Phd
President’s advisor, President Emeritus, National Center of Neurology and Psychiatry
Specially-appointed Professor, Professor Emeritus, Tokyo Medical and Dental University
Professor Katsumi Doh-ura
Tohoku University School of Medicine
MEXICO
NETHERLANDS
Evelien Lemstra MD, PhD
Neurologist, Alzheimer Center Amsterdam and Department of Neurology, Amsterdam University Medical Centers.
Member of the National CJD Working group in the Netherlands.
President of the Working group for cognitive neurology within the Dutch Neurology Association.
NEW ZEALAND
Dr Nick Cutfield
Clinical Senior Lecturer in the Department of Medicine at the University of Otago, and
Consultant Neurologist and Clinical Lead at Dunedin.
Director, National CJD Registry, New Zealand.
Dr Andrew Chancellor BHB, MBChB, MD, FRACP, FRCP
PAKISTAN
Associate Professor Saima Zafar (PhD)
National University of Sciences and Technology, Islamabad, Pakistan
PORTUGAL
Dr. Susana M. da Silva Correia, PhD
German National Reference Center for Transmissible Spongiform Encephalopathies (NRZ-TSE)
Department of Neurology, University Medical Center Göttingen
Co-founder and President, Portuguese Association for Prion Diseases
Dr. Angela P. da Silva Correia, PhD
German National Reference Center for Transmissible Spongiform Encephalopathies (NRZ-TSE)
Department of Neurology, University Medical Center Göttingen
Co-founder and Director, Associação Portuguesa das Doenças Priónicas (APDP)
SINGAPORE & MALAYSIA
Associate Professor Adeline Ng, MBChB (Edinburgh), MCRP (United Kingdom)
Senior Consultant – National Neuroscience Institute
SLOVAKIA
Dr Girma Belay
Chair, CJD Reference Centre
SPAIN
Professor Joaquin Castilla
Ikerbasque Research Professor, CIC bioGUNE – Proteomics unit (Prion lab). Parque tecnológico de Bizkaia. Derio, Spain
Jesús R. Requena, Ph.D.
CIMUS Biomedical Research Institute, University of Santiago de Compostela-IDIS
TAIWAN
Professor Shun-Sheng Chen
Emeritus Voice-Superintendent & Professor of Neurology
Kaohsiung Medical Center, Chang Gung Memorial Hospital
Kaohsiung Taiwan
Professor Ming-Jang Chiu
Director, Department of Neurology, NTU Hospital Taiwan
THAILAND
Poosanu Thanapornsangsuth, M.D.
Neurologist, Thai Red Cross Emerging Infectious Disease Health Science Centre, King Chulalongkorn Memorial Hospital
Clinical Instructor, Department of Medicine, Faculty of Medicine, Chulalongkorn University
TURKIYE
Dr Sezgi Canaslan Eyyuboglu
Post-doctoral Researcher in German National Reference Center for Transmissible Spongiform Encephalopathies (NRZ-TSE)
Department of Neurology, University Medical Center, Göttingen, Germany
UNITED KINGDOM
Professor Richard Knight FRCP(E)
National CJD Surveillance Unit, Edinburgh
Chair of the CJD Support Network Committee
Margaret Leitch
National Care Co-ordinator UK
Professor Simon Mead
Consultant Neurologist and Clinical Lead of the NHS National Prion Clinic
Professor of Neurology and Deputy Director of the MRC Prion Unit at UCL
UK CJD Support Network Committee Member
Professor John Collinge
Professor of Neurology and Head of the Department of Neurodegenerative Disease, UCL Institute of Neurology
Director of the UK Medical Research Council’s Prion Unit
Director of the NHS National Prion Clinic, National Hospital for Neurology and Neurosurgery, London
Professor Neil A Mabbott
Professor of Immunopathology and Head of the Immunology Division at the Roslin Institute and Royal (Dick) School of Veterinary Studies, University of Edinburgh
UNITED STATES OF AMERICA
Professor Brian Appleby, MD
Director, National Prion Disease Pathology Surveillance Center
Professor, Departments of Neurology, Psychiatry, & Pathology Case Western Reserve University School of Medicine
Professor Michael Geschwind
Professor of Neurology at the Memory and Aging Center (MAC), UCSF, San Francisco
Corinne Lasmezas, DVM, PhD
Professor, UF Scripps, Florida, USA
CEO, Vova Ida Therapeutics, Inc. (VIT)
Eric Minikel
Senior Group Leader, Broad Institute of MIT and Harvard
Sonia Vallabh
Senior Group Leader, Broad Institute of MIT and Harvard
Dr Glenn Telling
Director, Professor at Prion Research Center, Colorado State University
Ryan A. Maddox, PhD
Senior Epidemiologist and Deputy Chief, Prion and Public Health Office, Division of High-Consequence Pathogens and Pathology, National Center for Emerging and Zoonotic Infectious Diseases
Centers for Disease Control and Prevention
VIETNAM
Dong Thi Thu Trang MD.PhD
Outpatient Clinic for Senior Officers,
108 Institute of Clinical Medical and Pharmaceutical Sciences
Acknowledgements
The CJDISA acknowledges the commitment and dedication of the following members of the F & A group who have retired or are no longer working in the field of prion disease.
Professor Robert Will – UK
Professor Pierluigi Gambetti – USA
Professor Mauritizio Pocchiari – Italy
Dr Ermias Belay – USA
Rolande D’Amour, RN, MScN – Canada
Dr. Lawrence B. Schonberger, MD, MPH – USA
Professor Fabrizio Tagliavini – Italy
In Memoriam
Byron Caughey, PhD – USA (2026)
Dr. Byron Winslow Caughey passed away at his home on February 15 at the age of 68. He was a devoted husband and father, a real family man. He was, by all accounts, a humble, kind, and understanding man. He was a well-rounded individual, an accomplished artist and enjoyed making furniture, sculpting, and writing poetry. He was also a world-renowned scientist at the National Institute of Allergies and Infectious Diseases (NIAID) at Rocky Mountain Laboratory (RML) in Hamilton, Montana US.
Professor Michael Alpers – Australia (2024)
Michael Philip Alpers (21 August 1934 – 3 December 2024) was an Australian medical researcher, former long-term Director of the PNG Institute of Medical Research and John Curtin distinguished Professor of International Health, at Curtin University. He died at the age of 90 on 3 December 2024 in Perth, WA.
Dr Paul Brown – USA (2025)
Dr. Paul W. Brown, MD, a renowned neurologist and neuroscientist, passed away peacefully at age 89. Educated at Harvard College and the Johns Hopkins School of Medicine, he spent 45 years at the National Institutes of Health studying transmissible diseases and authored more than 400 scientific publications. He was internationally recognized for his pioneering work on the epidemiology of Creutzfeldt-Jakob Disease and Kuru and for his dedication to supporting families affected by prion diseases. In retirement he pursued his love of gardening, shared his interest in meteorology by teaching adult education classes and co-authored a book on the subject. A true renaissance man, Paul loved travel, art, literature, science and teaching.
Associate Professor Naomi Hachiya – Japan (2023)
Our thoughts are with the family of Associate Professor Naomi Hachiya from Japan who passed away 5/2/23 after a short battle with cancer. Naomi was very dedicated to her research work in the field of prion disease, she was a member of the Asian Pacific Prion Research Association and hosted this event in 2018. Naomi continued her dedication as director of the New Step Research Centre in Japan.