Stephen was born in Adelaide but spent most of his childhood growing up in Port Augusta in South Australia’s far north. At 21 he was diagnosed with Polycystic Kidney Disease (PKD), passed down through his maternal bloodline over generations, with his grandfather being one of South Australia’s early kidney transplant recipients in the early 1970’s. Stephen was fortunate to receive a living kidney from his first cousin Sally, and successfully transplanted in October 2022 after a short period of dialysis. Stephen is married with two young sons. He works as the General Manager of Consumer Business at the Port Adelaide Football Club and is back to living a very full, active, and healthy life.

Luca is a Research Assistant at the Centre for Kidney Research, Westmead, Sydney. He contributes to the Standardised Outcomes in Nephrology (SONG) steering committee and co-chairs the ANZDATA Consumer Group. Since 2009, Luca has been a passionate advocate for Kidney Health Australia. He is currently completing his Master of Public Health at the University of Sydney.

“Research gives us a voice. As members of the Consumer Advisory Panel, we use our lived experiences to influence and guide what happens behind the scenes, with the goal of improving the lives of people living with kidney disease. We don’t want to be mere passengers on this journey; we want to be part of the driving force.”

Rick is a retired-Accountant, whose ancestry can be traced to the arrival of Te Arawa, a double-hulled waka from a Hawikinui in the 13th century where Rick lives today. As far back as Rick knows there was not a single male who lived past the age of 60 in his ancestral line.  Many of whom died of renal-related diseases.  Rick and his brothers have committed themselves to changing this terrible statistic by being better educated and making better lifestyle and dietary choices. Rick received a live transplant from his wife and is is Chairperson of the Bay of Plenty Renal Consumers Group.

Barry was first diagnosed with Hypertensive Nephrosclerosis in March 1999 at the age of 47. This condition progressed to End Stage Renal Failure in January 2005, requiring Haemodialysis from January 2005 to October 2007. During this time normal workups were undertaken and, Barry underwent three coronary artery bypass grafts and a Parathyroidectomy in October 2007. Barry is dedicated to raising awareness about Chronic Kidney Disease (CKD) and sharing his story of survival. Barry continues to support organisations in delivering their messages to patients, their families, and the government.

Shyam has a PhD in chemistry and is a renal transplant recipient with lived experience of Haemodialysis (HD) and kidney disease. Shyam discovered a passion for consumer advocacy, community engagement, and research implementation as a person with lived experience and research training and is now a leader in developing, implementing, and evaluating consumer and community engagement strategies across a range of policy-setting bodies including Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health and Medical Research Institute (SAHMRI), The George Institute for Global Health Kidney Health Australia and the Better Evidence and Translation – Chronic Kidney Disease Centre of Research Excellence (BEAT-CKD) network. Shyam represents the community voice as a consumer member of the National Clinical Advisory Committee at KHA and the Australian Medical Council, appointed by the directors to represent the community voice in the accreditation of medical degrees by Australian Universities.

Natalie has experienced the joy of raising her children and witnessing them mature into young adults. She now takes pleasure in observing her grandchildren as they navigate through life. With a Bachelor of Commerce degree and a Chartered Accountant certification, Natalie has built a successful and fulfilling career. In her leisure time, Natalie leads a vibrant life filled with activities such as golf, walking, reading, snow skiing, and cherishing moments with her beloved family. Following her experience with dialysis, Natalie decided to join the Otago Kidney Society to advocate for kidney health and provide support to the local community. Her dedication led her to become a director at Kidney Health New Zealand. Over the past two years, she has actively participated in 10 Community Voice groups, which has now become her primary focus and passion.

Carolina was diagnosed with Polycystic Kidney Disease in 2014 when a sudden hospital admission revealed that she had lost a significant amount of kidney function and was rapidly heading towards end stage renal failure. As the first person in her family to be diagnosed with this disease, everything about this diagnosis felt overwhelming and difficult. Since the diagnosis Carolina has had to make big decisions regarding family planning and treatment options, often not fully understanding the impact of those decisions until much later. She fell pregnant in 2021 and has a daughter however faced a complex pregnancy needing to have multiple surgeries and dialysis 6 times a week for the duration of her pregnancy. These difficult, experiences has made her passionate about contributing to work that improves outcomes and pregnancy experiences for women with chronic kidney disease. Carolina joined the CAP as she saw it as a great opportunity to channel our collective voice to effect positive change and improve our conversations with health professionals to empower consumers.

Vicki Black is a mother and grandmother currently living with end-stage renal disease. She is undergoing home dialysis while awaiting a kidney transplant. Her personal journey has been challenging, but it has inspired her to offer support to others facing similar struggles. Vicki volunteer as a kidney buddy and provides a listening ear and understanding to those in need. In addition to her volunteer work, Vicki serves as a consumer advocate and representative at the Royal Adelaide Hospital. As a member of the Consumer Advisory Panel, she contributes her insights to researchers to provide a consumer perspective on research, advocating for positive change in the healthcare system.