Emeritus Professor of Clinical Neurology, University of Edinburgh, UK

Professor Richard Knight received his BA degree in Philosophy, Politics and Economics at Oxford University in 1972, his medical degree in 1977, his postgraduate medical qualification in 1980 and became a Fellow of the Royal College of Physicians of Edinburgh in 1993.

The Florey Institute, The University of Melbourne

Director, Australian National CJD Registry (ANCJDR)

Colin Masters is a Professor of Dementia Research at The Florey, University of Melbourne and a consultant at the Royal Melbourne Hospital. Colin Masters has focused his career on research in Alzheimer’s disease and other neurodegenerative diseases, including Creutzfeldt-Jakob disease.

Over the last 40 years, his work is widely acknowledged as having had a major influence on Alzheimer’s disease research worldwide, particularly the collaborative studies conducted with Konrad Beyreuther in which they discovered the proteolytic neuronal origin of the A? amyloid protein, which causes Alzheimer’s disease. This work has led to the continued development of diagnostics and therapeutic strategies and has been recognised by the receipt of many international awards.

More recently, he has focused on describing the natural history of Alzheimer’s disease as a necessary preparatory step for disease-modifying therapies.

Postdoctoral Prion Research Fellow, University of Melbourne

Head, Molecular Diagnostics, ANCJDR

Vicki has had a keen interest in prion diseases since 2000, when she got her first job as a research assistant (RA) for the ANCJDR. As an RA Vicki ran various diagnostic tests and collaborative research projects, and it was during this time that she decided to undertake a PhD in prion research. Under the supervision of Steve Collins, Vicki Lawson and Andrew Hill, Vicki’s PhD focused on understanding the nature of infectious prion species and prion disease susceptibility. Since completing her PhD, Vicki has continued her prion research, overseas and in Australia, with interests in prion protein proteolytic cleavage, and the relevance of these events to normal prion protein function and prion diseases, presenting her research findings at various national and international conferences.

Vicki has been the recipient of an NHMRC Fellowship and University of Melbourne Early Career Researcher Grant, and has been fortunate enough to receive several CJDSGN Memorial Awards/Grants.

Vicki is currently a part-time Research Fellow in the Department of Medicine, (RMH) at the University of Melbourne, and has also returned to where it all started, working part-time for the ANCJDR, again involved in aspects of diagnostic testing and collaborative research. Over the couple of decades Vicki has made significant contributions to prion research, in particular to the areas of prion disease epidemiology and diagnostics, prion strain pathogenesis and prion protein proteolysis.

Medical Officer – Executive Management Committee/ Palliative Care & Patient Care Advisor, CJDSGN

After completing a Science Degree at Macquarie University and then an MBBS through Sydney University, Debra obtained dual specialty qualifications –completing a fellowship in both General Practice (FRACGP) and in Palliative Care (FAChPM). She has always had a keen interest in neurology and neuropharmacology throughout her undergraduate degrees.

While a GP registrar, she cared for a patient with CJD from initial symptoms through to end-of-life care in the community and since 2020 has been the patient and palliative care advisor to the CJDSGN.

In 2023, she became the executive medical officer to the CJDSGN Australia; as well as a member of the friends and advisory group to the CJDISA. She is eager to continue to support education and advocacy for this rare and devastating neurological disease and acts in a voluntary capacity.

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

After medical training at Cambridge and Oxford Universities and a PhD in the genetics of prion diseases at Imperial College London, Simon Mead is a Professor of Neurology and Clinical Lead of the UK National Prion Clinic based at the National Hospital for Neurology and Neurosurgery.

Also working at the UK Medical Research Council’s Prion Unit, his research interests include clinical studies of CJD or prion disease patients, the discovery of genetic factors that cause or influence prion disease and the development of treatments for prion disease based on antibodies.

Department of Microbiology and Immunology, School of Biomedical Sciences, University of Melbourne

Victoria (Vicki) Lawson is an Associate Professor in the Department of Microbiology and Immunology, in the School of Biomedical Sciences at The University of Melbourne where she holds a lecturing position in the discipline of Pathology and heads a research group with an interest in transmissible neurodegeneration.

Her research interest is in understanding the cause of protein misfolding in the cells of the brain and gastrointestinal tract and how this can lead to diseases such as prion and Parkinson’s disease.

Her research has identified regions of the prion protein that are essential for the protein misfolding that defines the disease and the contribution glycosylation has in this process.

She has identified evidence of disease in peripheral tissues of animals affected with prion disease and been involved in studies using new imaging paradigms to detect disease in the central nervous system, which will aid in the development of treatments. Her research was instrumental in the validation of a surgical instrument cleaning product which is now used by many hospitals in Australia to reduce the risk of prion disease transmission through surgery.

Vicki’s research group has invested in the development of medically relevant prions which are now being used to test existing and novel methods for diagnosis, treatment and prevention of disease and is investigating the normal biology of prion protein to ensure that treatments that modify the protein do not cause further harm. Our aim is to improve the lives of patients and their families affected by prion disease.

Postdoctoral Research Fellow, University of Melbourne

Research Fellow, RT-QuIC, ANCJDR

Matteo discovered his passion for neuroscience while studying in Italy through an Experimental Psychology degree at uni. He later joined the Collin’s lab in 2011 starting a Doctor of Philosophy (PhD) degree in prion pathology using animal model and behavioural tests to assess the disease progression and how different brain region are affected differently by prions.

After spending a year interstate, Matteo returned to the Collins lab in 2017 to run the Australian National CJD Registry diagnostic tests such as the 14-3-3 and RT-QuIC for the diagnosis of prion diseases in cerebrospinal fluid from patients.

Matteo received the “International Melbourne Scholarship” to undertake his PhD at the University of Melbourne and received several CJDSGN travel awards to attend scientific conferences and present data derived from his research.

Scientific founder of Gate Bioscience

Pat is the co-founder and Head of Discovery Science at Gate Bio. Pat obtained his PhD in synthetic chemistry from the ANU under the supervision of Prof. Martin Banwell before conducting postdoctoral research in medicinal chemistry and chemical biology with Dr Chris Burns at the Walter and Elisa Hall Institute of medical research, and at the University of California, San Francisco with Prof. Jack Taunton, where he made pioneering discoveries on the selectivity of Sec61 modulators.

In 2017 Pat was recruited to Merck, South San Francisco as a Senior Scientist working on the development of cardiometabolic and oncology drugs. In 2021, Pat co-founded Gate Bio in South San Francisco, the first company dedicated to the discovery and development of Molecular Gates.

Director, Australian National CJD Registry (ANCJDR)

Medical Director, CJDSGN

Steven Collins is a neurologist-scientist who is Director of the Australian National Creutzfeldt-Jakob Disease Registry (ANCJDR), as well as Professor/Senior Principal Research Fellow in the Department of Medicine, the University of Melbourne and Clinical Lead, Dementia Mission and Member, Clinical Governance Committee, The Florey.

He was a National Health & Medical Research Council Practitioner Fellow 2006-2020. Professor Collins is also appointed to the Department of Clinical Neurosciences and Neurological Research, St Vincent’s Hospital, Melbourne, where he heads the Mitochondrial & Autoimmune Neurological Disorders diagnostic laboratory, a NATA accredited, national referral service.

After graduating from the Faculty of Medicine, the University of Melbourne, in 1982, he undertook clinical neurological training in Melbourne and Adelaide before undertaking post-graduate research studies in mitochondrial diseases, followed by post-doctoral fellowships in clinical neurology at the Mayo Clinic (Sandoz Prize), Rochester Minnesota USA and electromyography at the University of Western Ontario, London, Ontario, Canada.

The ANCJDR is the national referral service for diagnostic testing of prion diseases and in 2014 this and Alzheimer Disease CSF biomarker testing were subsumed under the NATA accredited National Dementia Diagnostics Laboratory, of which Professor Collins is Director. Through the ANCJDR Professor Collins undertakes both epidemiological and basic scientific research into prion diseases involving supervision of post-doctoral fellows and PhD students.

In 2008 Professor Collins became a member of the Friends and Advisory group of the CJD International Support Alliance and in 2009 he took on the role as Medical Director of the CJD Support Group Network assisting the network to support CJD families in Australia.

In addition, Professor Collins undertakes translational research into Alzheimer’s disease, as well as participates as principal investigator in Alzheimer’s disease clinical trials. In 2023, Professor Collins was awarded an AO in the Australia Day King’s Honours for his contributions to the field of prion diseases.

Clinician-Scientist, The Royal Melbourne Hospital

Assistant Medical Director, CJDSGN

Dr Sarah Holper is a neurologist with an interest in neurodegenerative diseases and a passion for science communication. After graduating from Monash University with a Bachelor of Medicine and Bachelor of Surgery (MBBS) in 2015, she completed specialist neurology training and received fellowship of the Royal Australasian College of Physicians (RACP) in 2022.

As a clinician-scientist, Dr Holper provides care for patients at The Royal Melbourne Hospital, and also conducts research pertaining to dementias including Alzheimer’s disease: the focus of her PhD. In addition to academic publications, Dr Holper writes popular science books and frequently speaks at public health events. Empowering people to take control of their health through improved health literacy forms a cornerstone of Dr Holper’s work as a neurologist and researcher.

Associate Genetic Counsellor, Hunter Genetics

Sheridan O’Donnell is a HGSA registered Genetic Counsellor who has been working at Hunter Genetics, John Hunter Hospital Newcastle NSW since 2004.

Her areas of specialty include pre-symptomatic testing for adult onset neurological conditions and prenatal genetics. Sheridan feels very privileged to be able to work with individuals and families during what is often the most stressful of times and hopes in her role she can help them feel informed, supported and less alone.

Co-ordinator, Longitudinal Study, Florey Institute

Co-ordinator, Study of At Risk of Prion Disease Cohort (SPARC)

Genevieve completed her Honours in Pathology before expanding her areas of interest and qualification into Epidemiology & Biostatistics. As a Research Assistant, Genevieve focused initially on the pathology of Alzheimer’s Disease before becoming a long-standing member of the Australian National CJD Registry (ANCJDR) from 2002 until 2017 when she relocated with her family to Perth, WA.

During her time at the ANCJDR, Genevieve gained extensive experience in managing the surveillance database and records as well as conducting human ethics compliant research, analysis and publication, developed skills in gathering both quantitative and qualitative data from literature and stakeholder surveys, gained substantial experience in writing Registry protocols, reports, manuscripts and has published widely in peer-reviewed journals. During this time, Genevieve effectively combined her pathology grounding with a strong understanding of biostatistics and epidemiology to drive reporting of CJD in Australia to state, national and international oversight bodies. Genevieve also assisted with team training, management and provision of the national CJD testing platform including biospecimen management, data collection, testing and reporting, bringing a systematic, considered and evidence-based approach to all her projects while naturally promoting effective communication and collaboration amongst her team members and stakeholders.

Since late 2024 on returning to Melbourne, Genevieve has taken on a new role at the Florey Institute of Neuroscience and Mental Health as the coordinator of the Study of the PrionAtRisk Cohort (SPARC), which is supported by the CJD Support Group Network. Initial work in this role includes the development of the study program and preparation of the ethics approval application for submission to The Royal Melbourne Hospital.