Speaker Bios
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.
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 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.
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.
Natasha is an Associate Genetic Counsellor with three years of clinical experience at the Department of Clinical Genetics, Liverpool Hospital. Natasha has provided patient centred genetic counselling for individuals throughout the process of predictive genetic testing for various heritable neurodegenerative disorders.
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.
Christiane graduated from Stuttgart-Hohenheim University, Germany (with honours in biology) and was awarded a PhD from Wagnening University, the Netherlands. Christiane then completed a post doc at University of Melbourne, worked as a Research Scientist at HortResearch in Auckland and then moved into a commercial role with Perkin Elmer managing the high throughput screening and proteomics technologies businesses. A four-year stint with Biotech start up Healthlinx as proteomics laboratory manager further rounded out her business and people skills which she now puts to effective use in her role at the ANCJDR, her most fulfilling role to date.
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.
Annie Saffrett is a Senior Occupational Therapist in a 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 progressing 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.
Eleni has been an Advanced Trainee in Clinical Genetics at Liverpool Hospital since completing her Basic Physician’s Training in Adult Medicine.
Dr Andrew Affleck is a Senior Hospital Scientist and Brain Bank Manager at Royal Prince Alfred Hospital’s Department of Neuropathology. Andrew has more than 13 years’ experience in the collection, characterisation and storing of brain tissue for research with a particular focus on neurodegenerative disease.
He completed his PhD in 2023 at the University of New South Wales with a key finding from his project demonstrating that the lowering and management of blood pressure during life associated with reduced burdens of Alzheimer’s and vascular disease type changes seen in the brain.
Andrew has built his career around his passion for understanding the brain, pursuing projects, and equipping other researchers aiming to produce tangible and meaningful knowledge advancements to better serve the health for our local, national and international communities now and into the future.
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.
Dr Rebecca Gooding is a Senior Medical Scientist 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.
