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.

Co-Director, Australian National CJD Registry, The Florey Institute 

Consultant Neuropsychiatrist, Royal Melbourne Hospital 

Dr Tom Reilly is a consultant neuropsychiatrist in Neuropsychiatry at RMS. He completed a Bachelor of Medicine, Bachelor of Surgery at Deakin in 2015 and a Masters of Psychiatry at the University of Melbourne in 2021. Tom has academic interest in research and teaching, and clinical interests in neuroimaging, psychiatric aetiology, organic psychiatry, and neurodegenerative disorders.

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

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.

Head of the Extracellular Vesicle Laboratory, The Florey Institute

A/Prof Laura Vella is head of the Extracellular Vesicle Laboratory at The Florey Institute. Her research investigates the tiny particles and molecules that cells release, what they can tell us about how cells are functioning, and how these signals might be used to improve the diagnosis of neurodegenerative diseases. She is a leading expert in the field, with more than 20 years’ experience advancing understanding of the role and application of extracellular vesicles in human health and disease.

She currently serves as Chair of the International Society for Extracellular Vesicles Tissue EV Taskforce, Chair of the Research Integrity Adviser Network at the University of Melbourne, and adviser to biotechnology companies working in the extracellular vesicle sector.

Neurology – Expert Advisor to the CJDSGN

Ass.Prof Sumana Gopinath is a general neurologist, providing patient-centered comprehensive neurological care.

Dr Gopinath works at Campbelltown Public Hospital and is attached to the Medical school at Western Sydney University. Her teaching interests are teaching medical students at the university and training the hospitals junior doctors, physician trainees and neurology trainees.

Sumana completed her PhD in neurogenetics, looking into familial neuropathies. She has a particular interest in neurogenetics and runs a monthly neurogenetics clinic in Campbelltown Hospital.

In addition to her clinical and research endeavors, Dr. Gopinath is committed to community services.

Genetic Services – Expert Advisor to the CJDSGN

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.

Consultant Neurologist, The Royal Melbourne Hospital

Co-Director, Australian National CJD Registry, The Florey Institute 

Medical Director, Expert Advisor to the 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 was admitted to Fellowship of the Royal Australasian College of Physicians, before completing a PhD in dementia.

As a clinician-scientist, Dr Holper provides care for patients at The Royal Melbourne Hospital and conducts research into neurodegenerative diseases, including Alzheimer’s disease and CJD. As Co-Director of the Australian National CJD Registry, she is involved in the diagnosis and surveillance of prion diseases and provides expert clinical advice to healthcare professionals and families affected by CJD.

Alongside her clinical and academic work, Dr Holper writes popular science books and regularly contributes to radio, podcasts and other media. Empowering people to make informed decisions about their body through improved health literacy is a cornerstone of her work as a neurologist, researcher and science communicator.

Professor of Neuroscience, University of Melbourne

Director, NHMRC Centre of Research Excellence in Enhancing Dementia Diagnosis

Head, Dementia Mission and Translational Neurodegeneration Laboratory, The Florey Institute

NHMRC Leadership Fellow

Clarivate Highly Cited Researcher

Dr. Ayton pursues both laboratory (metabolism & physiology) and clinical research (fluid & imaging biomarkers, clinical trial) in dementia to discover the underlying causes, to develop and implement diagnostics, and to intervene with new therapeutics. He leads the Enhanced Dementia Diagnosis study, Australia’s largest real-world study of blood diagnostics for dementia, and has previously lead the 3D clinical trial of deferiprone for Alzheimer’s disease.

Research Fellow, BOptom, PhD, Department of Optometry and Vision Sciences, University of Melbourne

Pei Ying Lee completed her Bachelor of Optometry and PhD in visual neuroscience at the University of Melbourne. She is a postdoctoral researcher at the University of Melbourne, working on eye biomarkers in neurodegenerative conditions such as prion disease and Parkinson’s disease.

Director/National Co-ordinator/Treasurer – Executive Management Committee, CJDSGN

Suzanne first heard about Creutzfeldt-Jakob disease (CJD) in the early 90’s, when a media report announced that 2100 Australians, who had been treated with human pituitary hormones for infertility and short statue, were now at an increased risk of developing CJD. This followed the deaths of four women who had died from Iatrogenic CJD due to contaminated pituitaries in batches of human pituitary hormones in Australia.

Suzanne became a founding member of the CJD Support Group Network (CJDSGN) in 1993 as NSW Co-coordinator and in 2004 was appointed Director. She was instrumental in the expansion of the network to offer support and assistance to all Australians affected by prion diseases.

Since early 2008, conducting a national education program has helped to educate health care professionals about CJD and other prion diseases, promote the work of the CJDSGN and emphasise the need of CJD patients and their families as well as the need for equity of care for at risk patients.
When the CJD International Support Alliance (CJDISA) was formed in 2006, Suzanne took on the role as co-chair of the alliance, a role that today still provides the opportunity to work with like organisations around the world and network with researchers and experts who are members of the ‘Friend and Advisor Group’ of the CJDISA.

Suzanne received an ‘Order of Australia Medal’ in the 2019 Queen Birthday honour list for her commitment to community health.

Genetic Family Representative – Committee, CJDSGN

General Practitioner – Expert Advisor to the CJDSGN

Dr Anna Sharpe is a GP based in Adelaide, SA, having relocated from the UK in 2015. After graduating from Hull York Medical School in 2008 with a Bachelor of Medicine and Bachelor of Surgery (MBBS), she received Membership of the Royal College of General Practitioners (UK) in 2013 and Fellowship of the Royal Australian College of General Practitioners in 2015.

Anna also has a personal connection to CJD, having lost her father, Paul, to genetic prion disease in 2020. Anna’s paternal grandmother also died from prion disease in 1991, but genetic testing was not available at that time. When Paul developed balance difficulties in 2019, he and the family did not imagine that the same disease that had claimed his mother’s life would be the cause of his own symptoms. Sadly, genetic testing confirmed the worst and he died just over a year from diagnosis.

She understands the devastating impact that prion disease has on families, as well as the burden of potentially carrying a mutation that will cause the disease. Her unique position as a doctor from a genetic prion disease family will allow her to advocate strongly for individuals and families affected by prion disease.

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.

Acting Scientist in Charge Department of Diagnostic Genomics, PathWest WA

Dr Rebecca Gooding is the Acting Scientist in Charge at the Neurogenetics Unit in the Department of Diagnostic Genomics at PathWest Laboratory Medicine of WA, a reference centre providing genetic testing for neurological and neuromuscular disorders for Australia and New Zealand.

Prior to this role, she worked as a research assistant at the West Australian Institute of Medical Research and was awarded a PhD in 2008. Since 2005, she has been working as a Medical Scientist at the Neurogenetics Unit. Over this time, she has been involved in all aspects of prion disease genetic testing from DNA extraction to PRNP gene sequence analysis and reporting as well as closely liaising with the ANCJDR and the CJD Support network to facilitate the testing and result delivery for the patients and families impacted by prion disease.

Research Officer, ANCJDR, The Florey Institute

Laura Ellett, PhD (Research Officer, The Florey Institute of Neuroscience and Mental Health) is an early career researcher 4-years post-PhD and currently leading an MRFF Early to Mid-Career Researcher team conduct a project entitle  “Tracking retinal biomarkers throughout prodromal and symptomatic prion disease”.

She has 18 years’ experience working in the neurodegenerative field with a particular focus on prion disease (PrD). Her career includes 9 years as a research assistant developing skills in investigating preclinical models of disease.

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.

Infection Control Coordinator – Expert Advisor to the CJDSGN

Linda Jarratt is currently managing the infection control programme at St Andrew’s Hospital, Adelaide working as the Infection Control Coordinator since 2007. She has 25 years’ experience working in the field of infection prevention and control in the public and private sectors including in metropolitan and rural hospitals. Linda has also worked in S.A. Health in communicable disease control and disease surveillance & investigation of STI’s, food borne outbreaks and vaccine preventable diseases in public health roles.

Her educational background includes a Bachelor Nursing from the University of South Australia and Bachelor of Health Sciences from the University of Adelaide majoring in pathology and public health epidemiology. Linda also completed a Master of Public Health in 2013 from the University of Adelaide publishing her dissertation The relationship between patient characteristics and the development of a multi-resistant healthcare-associated infection in a private South Australian hospital in 2013.

Linda has also recently participated in the National Creutzfeldt Jakob Disease (CJD) Infection Prevention and Control Guidelines and Case Definition Review Working Group and is very pleased to be an expert advisor in Infection Prevention & Control for the CJD Support Group Network.