It's been a busy 2025 so far, and i’m too lazy to do seperate posts.
I'm genuinely encouraged by the real progress we're starting to see in getting Connective Tissue Disorders (CTDs) the attention they deserve here in Australia.
The first Connective Tissue Disorders Network Australia (CTDNA) meeting in Parliament recently was a significant step. It was great to see doctors, researchers, advocates, MPs, and especially people living with CTDs, all in one room discussing how we can improve support and recognition.
On a personal note, it’s been fantastic to see my old Sydney Dance Company colleague Paul Mecurio, now leading the charge in Parliament for this very cause. (He returned to teach us his iconic role in Some Rooms 20 years ago!)

Earlier this year, I had the chance to speak at The Ehlers-Danlos Society Global Learning Conference in Brisbane, sharing insights with the international community.
I joined other international leaders at The Ehlers-Danlos Society's 2025 CORE Network of Excellence Annual Meeting to work on current best practices and future directions for patient care and research
It was also really valuable to connect with experts like Dr. Larry Afrin, Dr Tanya Dempsey to discuss Mast Cell Activation Syndrome (MCAS), a common and challenging issue for many with CTDs.
I'm continuing this work through my role on the Scientific and Medical Advisory Committee of CTDNA and as a member of HSD and EDS Australia (an Ehlers-Danlos Society CORE Network of Excellence).