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Conference Program

Our Speakers

Professor Richard Knight

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.

Professor Knight is presently serving as Director of the UK National CJD Surveillance Unit and has a Personal Chair in Clinical Neurology at the University of Edinburgh with an Honorary Consultant Clinical Neurology post in the Department of Clinical Neurosciences, Western General Hospital, Edinburgh, Scotland.

Professor Knight spends approximately 50% of his time divided between CJD Surveillance and research and 50% devoted to clinical services and teaching. He has authored and co-authored many CJD related papers related to sporadic, variant, genetic and iatrogenic forms of the illness.

Professor Knight also has a long involvement with CJD lay and charity organisations, currently being Chair of the UK National CJD Support Network Management Committee and an invited member of Friends and Advisors Group to the CJD International Support Alliance.

This is Professor Knight's seventh trip to Australia to present at an annual CJD Support Group Network conference, he regularly attends the CJD Foundation Family Conference in Washington DC and has also presented and assisted with the family conference organised by the Associazione Italiana Encefalopatie da Prioni (A.I.En.P) in Italy as well as his involvement with the CJD Support network annual family meetings in UK.

Professor Brian Appleby

Director, National Prion Disease Pathology Surveillance Center
Professor, Departments of Neurology, Psychiatry, & Pathology Case Western Reserve University School of Medicine

Dr. Appleby is a neuropsychiatrist with clinical and research interests in prion diseases (e.g., Creutzfeldt-Jakob disease) and young-onset dementias.

Dr. Appleby received a B.A. in biology and philosophy from Goucher College and a M.D. from Georgetown University School of Medicine. He completed an internship at Georgetown University Hospital and a psychiatry residency at The Johns Hopkins Hospital, where he also completed a geriatric psychiatry fellowship. Currently, he is Professor of Neurology, Psychiatry, and Pathology at Case Western Reserve University School of Medicine. He is Director of the National Prion Disease Pathology Surveillance Center at Case Western Reserve University and co-medical director of the CJD Foundation and a Friend/Advisor to the CJD International Support Alliance.

Professor Colin Masters

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.

Professor Steven Collins

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.

Suzanne Solvyns

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.

David Ralston

Assistant Director/ Chair – Executive Management Committee, CJDSGN

At the age of 15, David was referred by his family doctor to the Endocrine Clinic at a large Sydney hospital after it was observed that he was much shorter than his younger brother, and very short for his age. After a lengthy series of tests, David was approved to receive injections of Human Growth Hormone. Fortunately for David, he responded very well to the treatment, appeared to have no side effects and was able to pursue his passion for sport and eventually his university studies.

In 1992, David received a letter from the National Department of Health and Ageing advising him to consult the treating doctor who supervised his hormone treatment. At this meeting David was informed that some of the human hormone product that was used in the program had been contaminated, and several Australians had died as a consequence of their treatment. As a result, David was at increased risk of developing CJD. This not only caused David great concern, but the news was also very worrying to his parents who gave consent for his treatment all those years before, thinking at the time that they were doing the right thing.

David attended support group meetings in Sydney in an effort to find out more about CJD, a disease about which very little was known at that time. As a result of attending these support meetings, opportunities arose to participate in other state and national meetings and David was appointed as a recipient member of the National Pituitary Hormone Advisory Council, advising the Minister of Health and Ageing at a national level.

When the CJD Support Group restructured and expanded its role in 2004, from supporting people who were at risk of CJD through hormone treatments to providing support for Australians affected by all types of CJD, David joined the management committee. David, a retired secondary school teacher, and his wife Lynne have four daughters and live in Sydney.

In a voluntary capacity, David acts as Chair of the Management Committee of the CJD Support Group Network and assists Suzanne Solvyns, the Director/National Coordinator. David is also a member of the CJD International Support Alliance as a representative of the CJD Support Group Network – Australia.

Dr Debra Scott

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.

Dr Christiane Stehmann

Christiane is the coordinator of the Australian National CJD Registry, responsible for the day to day operations of the group and its interactions with clinicians and patient families.

Dr Vicki Lewis

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.

Assoc Professor Victoria Lawson

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.

Dr Matteo Senesi

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.

Shannon Sarros

Shannon graduation from the University of Melbourne with a Bachelor of Science (Honours) in 2011 and in 2013 began working as a research assistant (RA) for the Australian National CJD Registry. Shannon’s role within the ANCJDR has evolved over the years where she started with the routine diagnostic testing and in 2016, she was awarded a CJDSGN Special Travel Award to visit the National CJD Research and Surveillance Unit in Edinburgh for training in the RT-QuIC test for establishment in Australia.

Today Shannon’s position involves the management of the NATA accreditation for the laboratory as well as assisting the coordinator with the day-to-day operations of the group including reporting and clinician interactions.

Dr Sumana Gopinath

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.

Sheridan O’Donnell

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.

Annie Saffrett

Annie Saffrett is an Occupational Therapy Clinical Educator for South Western Sydney Local Health District.

Annie was involved in the set up of the newly established Neurodegenerative Disease Supportive Care Team (NDSC) based in Camden. This is a multidisciplinary team in SWSLHD that aims to support clients with rapidly progressive neurological illnesses’ in the community.

Prior to this role, Annie worked as a Community Occupational Therapist in the Illawarra with a predominant caseload of clients with Neurodegenerative Diseases. Annie has a special interest in Prion Diseases, and the value that Allied Health can provide in supporting the achievement of Quality of Life in a rapidly deteriorating and life limiting condition.

Annie is commencing a Neurodegenerative Disease Clinical Networking Group, engages in regular Quality Projects within this area and delivers education to improve the management of care for complex clients in the community across the SWSLHD.

Chloe Coelho

"I’m a PhD candidate, delving into the intricate dimensions of death, grief, and design. As a death scholar, my academic pursuits are driven by a commitment to unpacking the complexities of death literacy and devising innovative strategies to enhance public comprehension of this profound facet of human existence. My research endeavours traverse the realm of memorialisation practices, meticulously examining the interplay between materiality and the construction of meaning.

I firmly advocate that design serves as a potent instrument in reshaping conversations surrounding these profound subjects, as a conduit that bridges the chasm between life and death. I aspire to lead individuals on transformative journeys of understanding and healing."

Dr Pat Sharp, Phd

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.

Megan Wimmers

Meg is an associate genetic counsellor specializing in reproductive genetic counselling, bringing 18 years of experience as a cytogeneticist in haematological malignancies. Her passion for supporting individuals led her to transition into patient-facing care and she is dedicated to helping families navigate their genetic health decisions with clarity and empathy.

Ella Wilson

Ella is an associate genetic counsellor working in reproductive genetics including IVF/PGT and prenatal diagnosis. With a research focus on neurogenetics, she recently published an article exploring the experiences of individuals with leukodystrophy in clinical trials. Ella is dedicated to making complex genetic information accessible to individuals and families navigating reproductive choices.

Anice Abin