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Connecting, supporting and advocating for Australians and their families affected by PKD
Robert’s strong ties with his local community began 40 years ago. An active parent, he volunteered at three local schools, in P&C leadership positions and managed school and community sport teams.
Modest and unassuming, Robert’s sense of humour is evidenced when he says,“I can describe myself as a retired textile chemist and self-funded philosopher”.
It was Robert and his wife, Adriana’s, initiative that planted the seed for PKD Australia (PKDA) in 2011.
They approached Westmead Hospital Renal Department to see what could be done to find a cure for PKD. Their support of a PhD candidate’s research into PKD galvanised thinking about how research could be extended to multiple locations in all Australian cities. This, in turn, inspired PKDA’s goals, enabled the development of a national organisation and set its vision in motion.
Meeting with people from the PKD community, kidney researchers working to find a cure for PKD and all the nurses and doctors in the health system supporting patients with kidney disease inspires Robert to continue to help PKD Australia to make an even bigger positive difference to all families affected by PKD. Robert works on a voluntary basis.
Ian is a recently retired Executive following a corporate career in senior positions with Woolworths and Westfield. Ian was also CEO of Franklins Australia and a Board member of parent company Dairy Farm International. He
has also had considerable Board experience having been a Non Executive Director at Goodman Fielder, Myer, Inglis and as Chairman of ASX listed Baby Bunting.
Ian has a family member with PKD and is a founding Director of PKD Australia. Ian works on a voluntary basis.
PKD has been in Helen’s family for five generations and affects all four of her children. Helen’s relationship with PKD began more than 40 years ago when her late husband, Michael, and his father Otto were diagnosed a few weeks apart.
Having long dreamed of the possibility of a cure for PKD, Helen wondered how soon and where the breakthrough to a cure would happen. The powers of creativity and imagination have been an essential part of Helen’s life as an English, History and Creative Writing teacher, mother to Michael junior, Emily, Natalie and Sam and wife to Michael senior.
It is Helen’s hope creative and innovative practice combined with scientific knowledge will drive medical researchers and scientists to find a cure for PKD very soon. Helen is part of the founding team of PKD Australia and proud to promote and support visionary research projects in Australia. Helen works on a voluntary basis.
Our Scientific Advisory Board (SAB) consists of a team of leading specialists from across Australia and New Zealand who will advise on undertaking innovative research, facilitate new therapies and help improve patient management. The SAB operates independently from the PKD Australia Board and management. Their objectives are to:
Gopi Rangan is Senior Staff Nephrologist at Westmead Hospital and Associate Professor in Medicine at the Westmead Institute (University of Sydney).
Gopi’s research focus over the past 15 years has been in laboratory-based research and clinical trials in ADPKD. He has been a recipient of NHMRC funding for work in ADPKD, Co-Convenor of SONG-PKD and lead-Investigator of the PREVENT-ADPKD trial.
Dr Mallawaarachchi is a Clinician-Scientist with a research focus in polycystic kidney disease and in the genetics of inherited kidney disease. She is a Clinical Geneticist and Nephrologist, and Staff Specialist at Royal Prince Alfred Hospital, Sydney. Dr Mallawaarachchi is also a Senior Research Scientist at the Garvan Institute of Medical Research, Sydney.
She has particular expertise in genomic analysis and developed the first validated whole-genome sequencing based genetic testing for polycystic kidney disease. This translated into Australia’s first diagnostic test for these conditions.
Her current research targets understanding the molecular pathogenesis of polycystic kidney disease. She also has a research focus in applying genomic technologies to improve diagnostics for kidney disease. Her research translates into the clinic, where she is the NSW State Lead of the KidGen Collaborative and leads a multidisciplinary kidney genetics clinic.
Mike Eccles studied at the University of Otago (obtaining a PhD in Biochemistry in 1986), before doing a Postdoctoral Fellowship in Molecular Biology at Princeton University. He returned to Otago University as a Research Fellow in 1989. Mike established a research group to investigate developmental genes in cancer and disrupted growth/development.
He was awarded a Royal Society of NZ James Cook Research Fellowship in 2000, and at the same time he began to do research on PKD. In 2006 he was appointed the Zealand Institute for Cancer Research Trust Chair in Cancer Pathology, and currently he heads the Developmental Genetics Laboratory in the Pathology Department, University of Otago, focusing on epigenetic mechanisms in cancer and polycystic kidney disease.
Professor Judith Savige is a Professor in the University of Melbourne Department of Medicine at Royal Melbourne Hospital. Judith’s research interests include the genetics of inherited renal disease.
She was Foundation Professor of Medicine at Northern Health for 10 years from 2003 to 2013 before taking up her position at Royal Melbourne Hospital.
Professor Randall Faull MBBS, PhD, FRACP, FRCP is a Senior Consultant in Nephrology at the Royal Adelaide Hospital, and Director of Research and Training for the Central and Northern Adelaide Renal and Transplantation Service.
Randall is past President of both the Australian and New Zealand Society of Nephrology (ANZSN) and the Transplantation Society of Australia and New Zealand (TSANZ), and is currently on the Senior Examination Panel for the Royal Australasian College of Physicians.
He is the current chair of the South Australian Medicines Advisory Committee. He directs the Clinical Trials service in the Renal Unit at the Royal Adelaide Hospital, and as part of this role has been an investigator in a number of international trials of treatment of PKD. He has also been a chief investigator and co-investigator in a number of NH&MRC funded studies, and has long standing interest in both clinical and basic medical research.
Professor Sharon Ricardo is a Research Group Leader in the Monash Biomedical Discovery Institute at Monash University. She has an established reputation in stem cells and organ development. As head of the Kidney Regeneration and Stem Cell Laboratory her lab is producing high-impact research aimed at developing new stem cell-based therapies in combination with repair and growth factors that may offer alternatives to renal replacement. Her discoveries, that have led to the first induced pluripotent stem cell lines from human kidneys and novel patented proteins aimed at organ regeneration, have resulted in translational research evidenced by seven granted international patents.
Using state-of-the-art platform technology she has published >90 publications that have been cited >5,000 times. Sharon obtained her Ph.D. from the University of Melbourne in the field of kidney research. She was awarded a US National Kidney Foundation Fellowship to conduct postdoctoral studies at the Pennsylvania State University College of Medicine where she was appointed an Assistant Professor. In 2000 she returned to Australia as an NHMRC Howard Florey Fellow and commenced studies at Monash University.
She has won many awards including the TJ Neale Award (2016) from the Australia and New Zealand Society of Nephrology (ANZSN), the Judy S. Finkelstein Award from Pennsylvania State University; and the Marion Merrell Dow Excellence in Renal Research Award from the American Physiological Society. Sharon is elected to the Royal Society of Victoria and was a Kidney Health Australia Bootle Scholar. Sharon is an Editor of Kidney International and the Nephrology journal and serves on the Scientific Program and Education Committee of the Australian and New Zealand Society of Nephrology. She is actively involved in the promotion and education of science to the broader community by engaging with secondary school students, patient groups and philanthropic societies.
Deborah Lewis is a paediatric nephrologist working at the Children’s Hospital at Westmead/Sydney Children’s Hospitals Network. She trained in Melbourne and later London and revisited Guy’s/St Thomas’ Hospital twice since then as a paediatric transplant nephrologist. Despite having an interest in kidney failure treatments, our main focus in children is trying to delay kidney disease deterioration.
She is currently the Oceania representative on the Executive Committee of the International Paediatric Nephrology Association (IPNA) and on the scientific subcommittee for the International Paediatric Transplant Association (IPTA). This allows her the opportunity to stay in touch with key players in the major advances in children’s kidney disease worldwide.
Eric Haan AO, BMedSc, MBBS, FRACP is a clinical geneticist (HGSA) in the Adult Genetics Unit of the Royal Adelaide Hospital and Clinical Affiliate Professor in the School of Medicine, University of Adelaide. Following graduation from Monash University in 1972, he trained in paediatrics and clinical genetics at the Royal Children’s Hospital in Melbourne and gained research experience in London and San Diego. After a further period in Melbourne, he moved to Adelaide in 1985. He has contributed to research in a number of areas including inborn errors of metabolism, birth defects, familial breast cancer and the discovery of genes associated with intellectual disability.
He has been active in public health campaigns promoting periconceptional folic acid supplementation and avoidance of alcohol in pregnancy. As a member of the NHMRC Australian Health Ethics Committee he participated in development of Australian guidelines for genetic research. He is a former President of the Human Genetics Society of Australasia and of the International Federation of Human Genetics Societies. He was awarded an Order of Australia in 2005. He currently spends his professional time providing individuals and families with genetic diagnosis, counselling and testing, and in collaborative research, most recently as a participant in Australian Genomics’ KidGen and HIDDEN research studies.
Aron Chakera graduated in medicine from the University of Western Australia and completed his internship and residency at Sir Charles Gairdner Hospital. He was awarded a Rhodes Scholarship in 2000 and moved to Oxford where he completed a DPhil in molecular biology before training in renal medicine. In 2008 he was appointed to the Clinical Lecturership in Nephrology at the University of Oxford where he developed a translational research programme focussing on autoimmune diseases and functional measures of immunity.
In 2012 he returned to Sir Charles Gairdner Hospital as a Consultant Renal Physician and established the Translational Renal Research Group, based in the Harry Perkins Institute of Medical Research. In 2015, he was appointed the Director of Research for the Sir Charles Gairdner and Osborne Park Health Care Group.
He is a founding member of the PRISM alliance, an initiative involving all 5 Universities in Western Australia providing mentoring for high-performing students pursuing international scholarships, a Board member of the Lupus Foundation of Western Australia, the Raine Medical Foundation and a non-executive director of the Charlies Foundation for Research.
My journey began when my son was born with ARPKD. When he turned 25, I donated a kidney to him. As a founding member of PKD Australia, I am passionate about raising funds for research to help find a cure for PKD which has such an impact on the lives of families affected by the disease.
I look after much of the administration area and my time is on a voluntary basis.
Paolo has a long family history of PKD. Following kidney failure, the removal of both of his native kidneys and haemodialysis, in 2007 he was overwhelmed to receive the gift of a kidney from his brother-in-law, Bruno.
Paolo is a self-employed start-up coach and corporate trainer with specialist skills teaching
public speaking internationally. This latter experience in particular, along with his willingness to volunteer, encouraged Kidney Health Australia to approach Paolo shortly after his transplant and suggest he give presentations at community events, in order to raise awareness of kidney disease in general. In 2011 he was asked to establish and chair a state consumer group to bring together the kidney patient community. By 2018 he had taken on an additional role as chair of the National Kidney Consumer Council.
Paolo’s insights as a person both living with PKD and as a transplantee, have enabled him to empathise and engage with the patient and carer community, gathering feedback put forward to advocate for better health outcomes. This collective feedback has made a significant contribution to the National Strategic Action Plan for Kidney Disease, a blueprint for transforming kidney disease in Australia, published in March 2020.
Paolo, who’s two daughters have inherited the disease, joined PKD Australia in 2022, to
assist in building a supportive community of patients and carers around the country, active in their own self-care. He has a particular interest in building carer support networks, having witnessed first-hand the challenges faced by his wife Heidi in gaining guidance and
information whilst caring for him. His ultimate vision is for a world free of PKD and until that day, for better support and outcomes for his children and all PKD patients, regardless of
background, ethnicity, or social status. Paolo works on a voluntary basis.
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