Director/National Coordinator, CJD Support Group Network
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.
Chair, The Management Committee of the CJD Support Group Network
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.
Executive Committee – Family Representative
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.
Committee – Family Representative
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.
Committee – Family Representative
Tara lost her beloved husband Ira (aged 69) to Prion disease – CJD (Creuzefeldt-Jakob disease) in November 2018, just 2 and a half weeks after his provisional diagnosis and 6 weeks after showing symptoms, which started with vision problems. Ira and Tara were about to celebrate their 45th wedding anniversary and Ira had also just completed and graduated with a law degree in September 2018, as he had always dreamed of practising law.
Tara is a Registered Nurse who has specialised and worked in dementia care for over 25 years and was the primary carer for her dad who had Alzheimer’s disease. With this knowledge, Tara became increasingly concerned with her husband’s rapidly increasing symptoms. Once a provisional diagnosis of CJD was made, Tara made contact with the CJD Support Group Network as she was receiving so much conflicting information about CJD from health professionals who had little or no knowledge or experience in caring for someone with CJD.
Tara is very keen to advocate and assist families who are dealing with CJD and she is also wanting to raise awareness of this disease amongst health professionals. She is a passionate supporter for further research and is now raising awareness through sharing her personal experience of dealing with this devastating disease.
Tara is a member of the Advisory Panel for the Australian Journal of Dementia Care and is an active Consumer Advocate / Consumer Research advisor for many Dementia Australia and Cognitive Decline research groups. Tara has two Master’s Degrees (Clinical Nursing – Gerontology, and Mental Health) and she holds additional qualifications in education, management, midwifery and community nursing.
Medical Director, CJD Support Group Network
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
Infection Control Advisor to the CJD Support Group Network
Joe-Anne Bendall has worked in various nursing, management and consultancy positions since 1977. Her infection control career commenced in 1990 and has enabled her to work in private and public hospitals, public health and statewide positions at the NSW Ministry of Health and Clinical Excellence Commission.
Joe first became interested in CJD during her time at the NSW Ministry of Health. She had a rapid learning curve and enjoys supporting Suzanne Solvyns at the CJD Support Group Network. In 2012, after attending the 5th Annual National CJD Conference, Joe-anne offered her services on a more official basis and was appointed to the Committee of the CJDSGN as an advisor on infection control and since that time has assisted many ‘at risk of CJD’ patients who have faced discrimination and delays when accessing health care.
Joe is now working as a private consultant on infection prevention and control.
Dr Debra Scott
Palliative Care and Patient Care advisor to the CJD Support Group Network
Debbie is currently an Advanced Trainee in Palliative Medicine, in her second of three years for her Fellowship with the Australasian Chapter of Palliative Medicine. She is also a Fellow of the Royal Australian College of General Practitioners, has a Diploma in Child Health, an MBBS (Sydney University) and a Bachelor of Science in Advanced Biology (Macquarie University).
She has worked in numerous hospitals around NSW during her junior doctor years where she first became interested in Palliative Medicine. She has always had an interest in neurological diseases, majoring in neuropharmacology in her Science Degree.
She was closely involved in the care of a patient with CJD, from diagnosis to the end of life, in the community as a GP registrar. She was asked to present a talk at the National CJD conference in 2017 owing to her involvement with this patient and their family. She focused on “Caring for a suspect CJD patient” for her presentation. She is eager to continue to assist with this rare disease and acts in a voluntary capacity.
Policy and Resource Advisor to the CJD Support Group Network
Jennifer Cooke is an award-winning journalist and author who has worked in Sydney, London, Hong Kong and Washington, DC, over the past three decades. 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.