Connecting, supporting and advocating for Australians and their families affected by PKD
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.
Alissa is a trained lawyer currently working in impact and ESG at a venture capital fund.
Alissa has PKD and grew up watching her mum face the challenges of PKD, including dialysis, a transplant, transplant failure and dialysis again.
She is passionate about prevention and hopes to contribute to PKD Australia’s efforts in supporting PKD patients delay dialysis as long as possible through proactive lifestyle measures. She is also particularly interested in preventing the disease being passed on through generations – she has undergone pre-genetic testing/IVF herself and will advocate for government support to make this more financially accessible so others can do the same.
Alissa works on a voluntary basis
Professor Jacqueline Phillips is a biomedical researcher with over 25 years of experience dedicated to understanding PKD. Her research aims to uncover the fundamental mechanisms behind cardiovascular disease presentation and cystogenesis in PKD, with a focus on developing targeted therapies. She has published 36 PKD-specific papers and secured over $6 million in research funding.
Beyond research, Jacqueline excels in governance and strategy, serving as Chair of the Academic Senate at Macquarie University and the NSW Department of Primary Industries’ Animal Research Review Panel. She has received training through the Australian Institute of Company Directors. Her extensive experience includes community engagement through school outreach programs, leadership roles in Surf Lifesaving, and other community organisations, as well as in scientific societies such as the Australian Neuroscience Society, the Australian Society for Medical Research, and the Australian and New Zealand Society of Nephrology.
Jacqueline has been associated with PKD Australia since its inception. She has been a PKD Australia grant recipient and has actively participated in community activities, fundraising events, and educational initiatives. Her personal motivation to join the PKD Australia Board stems from a desire to contribute to an organisation that significantly impacted her research journey, alongside her commitment to advancing research and improving the quality of life for those affected by PKD. Her expertise and dedication make her a valuable asset to the board, contributing to the governance, strategic decision-making, and growth of PKD Australia. Jacqueline works on a voluntary basis.
Dan Pooley’s journey in technology and leadership began over a decade ago. An engaged and dedicated parent, he balances his professional life with active involvement in his family’s activities and his son’s upbringing.
Modest and driven, Daniel describes himself as a “technology enthusiast and lifelong learner.”
Dan’s connection to PKD is deeply personal. Experiencing the impact of polycystic kidney disease within his family inspired him to join the PKD board. His professional background in leading complex projects aligns with his goal to bring innovative solutions to the organisation.
Dan’s initiative and dedication have driven his efforts to support PKD research and awareness. He believes that leveraging technology and strategic thinking can significantly advance PKDA’s mission. His interactions with the PKD community, researchers, and healthcare professionals motivate him to contribute further to the cause.
Dan is committed to using his skills and experience to make a meaningful impact, supporting PKD Australia in its vision to improve the lives of those affected by PKD.
Dan works on a voluntary basis.
Jacob is proudly from Lutruwita/Tasmania. He lives with ADPKD, alongside many of his family members.
Jacob has a background in nursing and health promotion, specialising in climate health, health literacy, men’s health, immunisation, emergency nursing, education and regulation. He is a strong advocate and practitioner of holistic care approaches and promoting quality of life and wellbeing, for every stage of life and health.
Jacob is proud to be part of the PKD Australia team and strives to improve health and wellbeing outcomes through promoting and supporting research, advocacy and fundraising to benefit the many Australians living with and caring for those affected by PKD.
He strives to role model healthy choices and lifestyles for his two amazing children and is happiest exploring the wild places and oceans of Lutruwita with them and his beautiful wife.
Jacob 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 Amali 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 Head of Unit, 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. In her role as the Head, Kidney Therapeutics and Stem Cell Laboratory, her team is dedicated to pioneering impactful research focused on developing novel cell-based therapies for mitigating the progression of kidney disease. 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.
Employing cutting-edge platform technology, she has authored >110 publications with more than 7,200 citations. Her academic journey began with a Ph.D. in kidney research from the University of Melbourne, followed by a prestigious US National Kidney Foundation Fellowship for postdoctoral studies at the Pennsylvania State University College of Medicine, where she was subsequently appointed as an Assistant Professor. In 2000, she returned to Australia as an NHMRC Howard Florey Fellow and commenced her research at Monash University.
Throughout her career, Professor Ricardo has received numerous accolades, including the TJ Neale Award from the Australia and New Zealand Society of Nephrology (ANZSN) in 2016, the Judy S. Finkelstein Award from Pennsylvania State University, and the Marion Merrell Dow Excellence in Renal Research Award from the American Physiological Society. She is an elected member of the Royal Society of Victoria and was honoured as a Kidney Health Australia Bootle Scholar. She actively engages with the broader community through her involvement in science education, working with secondary school students, patient groups, and philanthropic organisations.
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.
Aron Chakera MBBS(Hon), FRCP, FRACP, FHEA, DPhil is an adult nephrologist and clinician scientist working at Sir Charles Gairdner Hospital in Western Australia. His clinical interests include genetic kidneys diseases, autoimmunity, and transplantation. He leads the Translational Renal Research Group in the Harry Perkins Institute of Medical Research with research interests spanning the spectrum from discovery science through to chronic kidney disease epidemiology.
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.
Kelly Lambert is an Associate Professor and Advanced Accredited Practising Dietitian at the University of Wollongong in New South Wales.
Kelly has nearly three decades of experience as a clinical dietitian, with the majority of her clinical career as specialist kidney dietitian at the Illawarra Shoalhaven Local Health District and Wollongong Hospital.
Kelly’s research interests focus on helping people with kidney disease live better lives. She is passionate about helping people living with kidney disease to make optimal diet and lifestyle choices. To achieve this, she works as Co-Director of the Kidney Lifestyle Research Group and Deputy Director of Health Innovations at the University of Wollongong.
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.
Ian Cornell
Robert Gardos
