Speeches
Thursday, 04 June 2026
Converge 2026 – Australian POTS Foundation Gala Dinner
Good evening everyone, and for those of you who have travelled, welcome to Adelaide.
It is a pleasure to join you this evening for the CONVERGE 2026 Gala Dinner, and to help celebrate the fifth anniversary of the Australian POTS Foundation.
The Foundation was established to address something many people living with POTS understand well – the experience of trying to navigate an illness that is poorly understood, frequently misdiagnosed, and often invisible to the people around them.
For many, the path to diagnosis can be long, confusing, and deeply frustrating.
People can spend years trying to understand why everyday life suddenly feels so difficult - why exhaustion doesn’t improve with sleep, why standing up can cause dizziness, why concentration becomes hard.
Things that most of us rarely think about - standing in a queue, attending school or university, concentrating through a workday, exercising, or getting through an afternoon, can become physically exhausting and unpredictable.
What is often less visible is how much effort goes into simply trying to appear “fine, thanks”.
Many people become highly skilled at pushing through exhaustion, adapting quietly, and carrying on in ways others may never fully comprehend.
Over time, through the experience of friends and family, I have come to appreciate more personally just how much resilience these conditions demand.
Families and carers understand the quiet emotional strain of watching someone they care about continue pushing through exhaustion and uncertainty, while trying to hold onto some sense of ordinary life.
This is why the work of the Australian POTS Foundation is important.
POTS disproportionately affects women and girls and, perhaps partly because of this, has for too long battled for recognition and understanding.
Initial dismissal, delayed diagnosis and misdiagnosis remain a reality for many patients, often prolonging the uncertainty and difficulty they are already managing.
Over the past five years, the Australian POTS Foundation has helped bring far greater awareness and understanding to POTS across Australia.
Thousands of GPs and healthcare professionals have taken part in education programs designed to improve recognition and understanding of the condition.
The Foundation has also supported Australian research into autonomic dysfunction, Long COVID, quality of life, and physician awareness, helping bring more attention and recognition.
Advocacy from the Foundation and the broader community has also helped strengthen recognition of POTS within the healthcare system, including progress toward better data collection and improved access to diagnosis.
The Foundation has also achieved an important national milestone by securing Australia’s first official ICD (International Classification of Diseases) diagnostic code for POTS.
This will play an important role in improving recognition, diagnosis, research, and patient care into the future.
Just as importantly, the Foundation has provided what many people needed - trusted information, support, and the reassurance that they are not alone.
I acknowledge the partnerships that have helped drive this progress, including the contributions of clinicians, researchers, universities, hospitals, philanthropic organisations, and patient advocates.
I am also very pleased to see strong South Australian involvement in this work, including partnerships with Adelaide University, SAHMRI, and The Hospital Research Foundation.
I thank Marie-Claire and Jon Seeley, together with the Foundation’s Board, volunteers, supporters, and broader community, for helping build a national voice and support network for Australians living with POTS.
To the patients, carers and families, thank you for your honesty, persistence, and your advocacy.
Congratulations to the Australian POTS Foundation on five years of remarkable achievement, and I wish you every success for the future.
To everyone attending the second day of the conference, I hope CONVERGE provides valuable opportunities for learning, collaboration, and connection.