Speeches
Wednesday, 20 May 2026
Morning Tea for Neurofibromatosis Awareness Month
I warmly welcome you to Government House to mark Neurofibromatosis Awareness Month.
My husband Rod and I feel strongly that this is a House and gardens for all South Australians.
This morning, it’s a pleasure to bring together members from all corners of the NF community here in South Australia, as well as interstate: clinicians, researchers, pharmaceutical providers, support services, and of course, children and adults affected by NF and their families.
NF Awareness Month presents an important opportunity to bring a condition which is not well understood by the broader community out of the shadows and into the light of genuine public understanding.
As I think everyone here knows, NF is a varied condition. No two people living with it are having the exact same symptoms and complications. No two families are facing the exact same challenges.
What many families do share, however, is uncertainty.
They are navigating a journey with no clear map and no predictable destination.
I am deeply encouraged by the honesty of those who have spoken up about that journey, such as Kirsty Whitehead, a mother of two children with NF, who approached Government House last year about hosting a morning tea for NF Awareness month.
I recognise the enormous energy that parents and carers invest in navigating multiple systems of medical care, support, and information.
It’s a heavy load to carry.
At the same time, I greatly appreciate the efforts of people inside these systems, doing their upmost to treat children and adults with NF, to support them and their families, and to undertake research that will benefit patients now and into the future.
I thank the clinicians with us today who bring both expertise and compassion to their work with NF patients.
I thank those you working actively to explore what future NF care pathways and research opportunities might look like right here in South Australia.
I note that a number of you came together yesterday for a roundtable supported by the Commissioner on Excellence and Innovation in Health.
I look forward to seeing what may come from these discussions, especially in relation to coordinated care.
Friends,
I believe that some of our best ideas are developed through actively listening to other people, and this gathering is, I hope, precisely that: a moment to listen, to connect, and to move forward with renewed purpose.
To every person in this room living with NF or loving someone who does: your experience is valid, your voice matters, and South Australia is listening.
I wish you all the best as we work together to produce better outcomes for patients with NF, and support for their families.