CJDSGN Management Structure
(link to pdf)
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.
Gail Glasscock
Secretary – Executive Management Committee/ Family Member Representative, CJDSGN
Gail Glasscock lost her husband Ross in December 2008 after he was diagnosed with suspected CJD. Until that time she had no knowledge of CJD apart from the media coverage in the 1990’s when the world became aware of the variant form of CJD, commonly referred to as ‘Mad Cows Disease’.
When all test indicated that Ross was suffering with CJD, her knowledge soon grew. His diagnosis was a very slow process but once suspected CJD was the diagnosis she became aware of classical CJD and the various forms it may involve. After autopsy results confirmed that Ross had died of CJD, Gail was anxious to know as soon as possible if he had suffered with a genetic form of CJD as Ross and Gail have three children. If so, the related implications of this for the children and other family members became a primary concern for the whole family.
She was fortunate to have access to prompt genetic testing through a genetic service. The service ruled out a genetic cause within 2 weeks. This timely process, along with the support offered by the service was invaluable. Hopefully the future involvement of genetic services will make both support and counselling readily available to all families when needed.
Gail is currently a member of the Executive Committee of the CJD Support Group Network as a representative of families affected by sporadic CJD.
Dr Debra Scott
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.
Jennifer Cooke
Policy and Resource Advisor – Committee, CJDSGN
Jennifer Cooke is an award-winning journalist and author who has worked in Sydney, London, Hong Kong and Washington, DC, over the past 45 years. During that time, she has worked for newspapers including the Sydney Morning Herald for which she reported extensively on the emerging public health risk in Australia of CJD in relation to Australian human pituitary hormone recipients and related inquires and court cases.
She has also worked for the South China Morning Post, websites, fact-checking organisations and the Royal Commission into Institutional Responses to Child Sexual Abuse. She is currently the editor of Australian Pharmacist.
Her first book, Cannibals, Cows & the CJD Catastrophe, won the 1999 Eureka Science Book Prize. Jennifer has befriended and assisted people at risk of CJD since 1992 and is also a founding member of the CJD International Support Alliance Friends and Advisors Group.
Colleen O’Hara
Family Member Representative – Committee, CJDSGN
Colleen lost her husband, Jake, in April 2014 to CJD at the age of 42. He spent 3 ½ weeks in a Melbourne hospital having a barrage of test before he was diagnosed with CJD after a brain biopsy. He was returned to his hometown in Northern Victoria and died 3 days later.
Like so many she had no idea about CJD and the devastation it reaps until faced with the diagnosis of no treatment or cure. Jake had actually joked about having “Mad Cows” at the very start of his hospital stay, as he was a dairy farmer, unbeknown to him the deadly implications that CJD was about to have.
It took Colleen 3 years to have the courage to have Genetic testing on the DNA sample taken before Jake died. She had come to the CJDSGN genetic family meetings and conferences each year, listening to experts and speaking to other CJD family members, the implications of the genetic diagnosis on her young son (10 yrs old) and Jake’s brothers at the forefront of her mind. The whole process working with a genetic service was handled with sensitivity, with counselling and the communication was wonderful. It took 3 months to receive a normal result (no genetic mutation) confirming a diagnosis of Sporadic CJD was welcomed, but why Jake and why so young are questions she will forever ask.
Colleen has attended the CJDSGN conference each year as she is interested in hearing about the advances in diagnostic technology, something that will always plague her, anything to reduce the pain and anguish that Jake endured in his in final month and the missed quality time with his young son.
Colleen accepted the role of CJD family representative in 2020.
Rosemary Reuille Irons
Genetic Family Representative – Committee, CJDSGN
Rosemary, who lives in Australia, has lost ten relatives to genetic prion disease in the United States. This includes cousins, aunts and uncles ranged in age from 51 to 70. Rosemary’s youngest sister Janice aged 58 died in 2009. Although Rosemary’s mother, Elizabeth, carried a mutation for prion disease her death in 2004 was not due to CJD. In 1945, Rosemary’s maternal grandmother died of a ‘diagnosed’ brain tumour. It is now suspected this was in fact CJD. Only a few families in the United States have had more than ten deaths from CJD.
Rosemary has attended CJD conferences in the United States as well as Australia. She wants to seek more knowledge about research and provide support to families. She is keen to see research and theory translated to practical resources for families. The CJDSGN is currently providing the best environment for families to cope with a diagnosis of suspected CJD.
As a former university academic, Rosemary wants to educate others across the nation and promote awareness of the CJD Support Group Network and its services to families. As more research into the disease becomes available, the CJDSGN can continue sharing new information and informing families across Australia.
Professor Steven Collins
Medical Director – Associate Advisory Committee, CJDSGN
Steven Collins is a neurologist who is Director of the Australian National Creutzfeldt-Jakob Disease Registry (ANCJDR), as well as Professorial/Senior Principal Research Fellow in the Department of Medicine, the University of Melbourne and a National Health & Medical Research Council Practitioner Fellow. 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, Rochester Minnesota USA and electromyography at the University of Western Ontario, London, Ontario, Canada.
Stemming from his role as Director of the ANCJDR, he holds or has held membership in a number of national committees (most notably, the Transmissible Spongiform Encephalopathy Advisory Committee) advising on a range of issues, including clinical and infection control matters for CJD and related disorders. The ANCJDR is the national referral service for diagnostic testing of prion diseases, including CSF for 14-3-3 proteins and in 2014 this and Alzheimer Disease CSF biomarker testing was subsumed under the NATA accredited National Dementia Diagnostics Laboratory, of which Professor Collins is co-director.
Since 1997, Professor Collins has overseen, coordinated and represented the participation of the ANCJDR in a large international CJD surveillance consortium (EUROCJD). Through the ANCJDR Professor Collins undertakes both epidemiological and basic scientific research into prion diseases and supervises a number of post-doctoral fellows and PhD students. 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 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
Professor Martin Delatycki
Genetic Services – Associate Advisory Committee, CJDSGN
Medical Director, Victorian Clinical Genetics Services
Director, Bruce Lefroy Centre for Genetic Health Research
Murdoch Childrens Research Institute
Lisette Curnow
Genetic Services – Associate Advisory Committee, CJDSGN
Genetic Counsellor, Victorian Clinical Genetics Services
Murdoch Childrens Research Institute
Associate Professor Sumuna Gopinath
Neurology – Associate Advisory Committee, 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.
Dr Gregory Kwon
Neurology – Associate Advisory Committee, CJDSGN
Dr. Gregory (Gi Tae) Kwon, currently completing his training in Neurology as a Neurology Advanced Trainee at Nepean Hospital in Sydney, NSW. He has completed his medical training at the University of New South Wales (UNSW), followed by the attainment of a Master of Medicine (MMed) In Clinical Neurophysiology from the University of Sydney.
Subsequently, he pursued and completed a stroke fellowship at the Canberra Hospital. He has a keen interest in general neurology, particularly in the subspeciality of stroke. Alongside this focus, he harbours an additional passion for delving into the complexities of Creutzfeldt-Jakob Disease (CJD).
Professor Richard Knight
International Partner/ Champion, CJDSGN
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.
The CJDSGN acknowledges and thank those who have contributed to the work of the CJD Support Group Network as committee members since the restructure of the Management Committee in 2004.
Joe-Anne Bendall (infection control advisor from 2012 – 2023)
Lyntara Quirke (family representative 2020 – 2023)
Josephine Farlekas (genetic family representative 2011 -2018)
Susan Cockerill (hPH representative 2011 – 2019), Member of National Pituitary Advisory Council (NPHAC) 1995 -2000
Mandy Newton (dec) (genetic family representative and Program Manager 2004 – 2010)
Carol Wilson (hPH representative and co-director 2004 – 2007), Tasmanian CJDSGN coordinator 1993 – 2004