Director/National Coordinator, CJD Support Group Network
Suzanne who grew up in Sydney, first heard about Creutzfeldt-Jakob disease (CJD) in the early 90’s, when a media report announced that about 2500 Australians who had been treated with human pituitary hormones for infertility and short statue were now at an increased risk of developing this rare and fatal disease. This report followed the deaths of four women who had died from Iatrogenic or medically acquired CJD due to contaminated pituitaries in batches of human pituitary hormones. Suzanne immediately realised that this was the fertility program that she had taken part in prior to the birth of her first child Damien in 1977. It was later confirmed that she had received a batch that was believed to be contaminated and common with women who had died.
Suzanne, who ran her own retail business for many years, became a founding member of the CJD Support Group Network (CJDSGN) in 1993 as NSW Co-coordinator. She was also appointed as a recipient member of the National Pituitary Hormone Advisory Council (NPHAC) and the Human Pituitary Hormone Counselling Service.
When the CJDSGN was restructured in 2004 Suzanne took on the role of Director and National Coordinator. In 2005 the network was expanded to offer support and assistance to all Australians affected by prion disease and Suzanne became very passionate about the need for support for CJD families.
Since early 2008, part of her role has been to promote awareness of prion disease in Australia by conducting an education program on a National basis. Presenting at conferences and at in-service meetings in hospitals is not only helping to educate health care professionals about CJD, but has also done a lot to promote the work of the CJDSGN.
Suzanne enjoys her close association with Florence Kranitz as co-chair of the CJD International Support Alliance (CJDISA), the opportunity to work with like organisations around the world and to network with researchers and experts who are members of the CJDISA’s friend and advisory group.
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 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 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 committee member of the CJD Support Group Network as a representative of families affected by sporadic CJD and also a member of the CJD Support Group Network – Victorian Fundraising Committee.
Josephine Farlekas is married with two children and four grandchildren.
She first found out about CJD when her father passed away in 1992. At the time not a lot of information was available about this disease and nothing was mentioned about familial CJD. Over the next few years other members of her extended family passed away after suffering with CJD and that is when the family realised that they were dealing with the genetic form of the disease.
In 2005 her eldest brother passed away also from CJD and she started to think seriously about having the genetic testing done to find out if she carried a genetic mutation. Finally in 2009 she made the decision to be tested and when the test results came back as positive for the mutation of E200K she actually felt a sense of relief that she could stop thinking about it and get on with her life.
Last year her second brother shared with her that he was suffering with memory loss and feared that he may in the early stages of CJD. Sadly he also passed away in June 2012 bringing to date the number of deaths to this terrible disease to Eight.
Although at times Josephine finds it a challenge living with this monster lurking in the dark, she loves her life and is determined to enjoy every precious moment.
Josephine is currently a committee member of the CJD Support Group Network as a representative of genetic family members and also a member of the CJD Support Group Network – WA Fundraising Committee.
Susan Cockerill (Andrews) is a human Pituitary Hormone (hPH) recipient who from 1981-1982 was treated with human pituitary gonadotrophin in Tasmania on a fertility program. In December 1991 Susan found out from a friend, also a hPH recipient, that she may be at increased risk of developing iatrogenic (medically acquired) Creutzfeldt-Jakob disease (CJD) from possibly contaminated batches of pituitary hormones. Already the deaths of three women, soon to become four, from CJD had been connected to their fertility treatment.
Susan’s friend had been notified by her treating doctor of her risk status so becoming alarmed Susan began to make enquires only to find out that she also was considered to be ‘ at increased risk of developing CJD’.
Susan, and a small number of other recipients of hPH, began the Tasmanian support group which in 1993 became part of the national CJD Support Group Network. Susan was the original Tasmanian coordinator and remained involved until 1997. She was also one of the first two recipients to commence legal proceedings against the Commonwealth Health Department and CSL claiming compensation for psychiatric injury due to fear of developing CJD.
Susan also served as a recipient member of the National Hormone Pituitary Hormone Advisory Council (NHPAC), which gave advice to the Federal Minister of Health and Ageing, throughout its existence from 1995 until 2000.
Susan rejoined the CJD Support Group Network in 2010 and assisted with providing information for the evaluation of the human pituitary trust account and the CJD Support Group network. She is primarily interested in making sure that the special trust account is maintained to provide financial assistance and compensation in the rare case that another recipient may develop CJD as a result of receiving human pituitary hormones. She is also passionate about the continued funding for support and assistance for the ‘worried well’ and concerned that as an ageing population the recipient community can access health care without discrimination, embarrassment or delays due to their risk status.
Susan is currently a committee member of the CJD Support Group Network.
Project Manager, Family Data Collection
My name is Justin Grasso. I live in the South Western Australian town of Busselton with my wife and two daughters. I have worked in Primary Education since 1995 and am currently a Principal at a school in the nearby town of Bunbury. I am the eldest of two brothers, with both parents having since passed, including the loss our father in 2005 from genetic CJD. My passions include photography, fishing, boating, 4wding, camping and adventuring in the great outdoors with my family. I consider myself as an ‘alright’ handyman loving to take on the challenge of constructing everything from anything. I have lived a considerable part of my working life in the Kimberley and Pilbara regions of northern Western Australia which I still regard as my second home.
This year I officially took on the role as Project co-ordinator – family data collection – for the CJD Support Group Network. I am currently piloting a project of family data collection in collaboration with Deana Simpson, USA which is aimed to assist genetic families with the collection of data by the family and for the family.
Medical Director, CJD Support Group Network
Professor Collins is a neurologist who is Director of the Australian National Creutzfeldt-Jakob Disease Registry (ANCJDR), as well as Principal Research Fellow in the Department of Pathology, 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 DNA Diagnostic Laboratory, a NATA accredited, national diagnostic referral laboratory. 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 and electromyography at the University of Western Ontario, London, Ontario.
Stemming from his role as Director of the ANCJDR, he is a member of a number of national committees (most notably, the Transmissible Spongifrom 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 CSF for 14-3-3 proteins. Since 1997, Professor Collins has overseen, coordinated and represented the participation of the ANCJDR in a large international CJD surveillance program (EUROCJD). Through the ANCJDR Professor Collins undertakes both epidemiological and basic scientific research into prion diseases and supervise a number 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.
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 NSW Ministry of Health. Joe’s infection control passion is for patient quality and safety.
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.