From the Chair

It is my pleasure to announce that Dr Deborah Burnett has accepted our invitation to be the Association’s Patron. Dr Burnett has a distinguished career in research at both the UNSW and the Garvan Institute, where she has been the recipient of numerous awards.

Patron
Dr Burnett, Scientia Senior Lecturer at UNSW, was a 2025 finalist in the Marie Krogh Young Women in Science Prize for her transformative contributions to immunology and vaccine innovation. Her research challenged long-held assumptions about self-reactive B-cells, revealing they can strengthen immunity – a breakthrough now shaping global vaccine design. Deborah has led programs informing public health policy, published in Science and Immunity, and established national vaccine platforms endorsed by NSW Health. Recognised in 2023 with the NSW Premier’s Prize and 2025 Young Tall Poppy Award, she combines cutting-edge science with leadership to accelerate safe, effective vaccines and champion equity in STEM. She was also inducted into The Marie Krogh Prize Alumni in November, 2025.

We are indeed honoured to have Dr Deborah Burnett as the Association’s Patron.

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The Reality of a GBS or CIDP Diagnosis
Being diagnosed with GBS or CIDP is a very harrowing experience. How you come through it depends on a number of factors: your medical team, rehab team, your resilience and luck. By resilience, I mean determination and attitude. By luck, I mean, even if you have a great medical and rehab team and resilience, you may still not achieve the recovery you hoped for. This is, of course, my opinion. It is also my experience.

Facing the Initial Shock
Shock and confusion accompany the initial diagnosis. Believe it or not, things could always be worse. One thing is sure, GBS and CIDP do not discriminate. It can raise its ugly head in the young, middle aged or elderly, elite sportspeople, CEOs, labourers or academics.

You're Not Alone
This association is here to support you, sharing our experiences and information. Our committee and membership are made up with people diagnosed with GBS or CIDP and/or family members.

Supporting family members through their loved one’s journey is a priority. Watching, feeling helpless and worrying as they decline before levelling off and finally regaining some sort of normality.

Winter Challenges
With winter upon us, even though it has been quite mild so far, can be a difficult time, it certainly is for me. My pain level increases with the drop in temperature.

Connecting Through Coffee Catch-Ups
This is where our Coffee Catch-Ups can be of benefit. Members, new and old, attend online to share their experiences and support one another.

Progress on Our New Website
Now to the ongoing saga being the design and launch of our new website. We are slowly achieving to have our requirements met, unfortunately very slowly.
I am still very hopeful that we are within reach of the finish line, (I know I have said this before), so watch this space.

Coffee Catch-Up
Please join us at the next Coffee Catch-Up, second Saturday of each month!

Cheers, Ken.