President’s Column
Welcome to the Spring edition of the HSA newsletter. I hope this message finds all our members safe and well.
Kitea Presentation Recap
Back in May, we were thrilled to host a well-attended online session with international speaker Jess – the fourth person in the world to receive the Kitea brain pressure sensor. Jess shared her experience with the device and demonstrated how it works. Many attendees appreciated her insight, particularly her reflection on how the sensor has provided her with peace of mind.
Upcoming Meetings – Venue Updates
Please note that the Sydney and Brisbane locations for our August meetings may not be available, as our facilitators in those locations are currently unwell. We’ll keep you updated via our website and Facebook events page, so please check in closer to the date.
National Conference – 8–9 November 2025
We’re excited to announce that registration is now open for this year’s National Conference.
Here’s a snapshot of the ticket pricing:
| TICKET PRICING | ONLINE | ONLINE (NON MEMBER) |
IN PERSON | IN PERSON (NON MEMBER) |
| Ticket Pricing | $75.00 | $100.00 | $110.00 | $150.00 |
| Early Bird Pricing (Discounted) | $67.50 | $90.00 | $99.00 | $135.00 |
Early bird pricing is available for a limited time – don’t miss out! Please note that some online sessions will not be broadcast due to privacy considerations for those sharing personal stories.
Confirmed Speakers So Far:
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Dr Brinda Shivalingam – Lifehouse/RPA
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Professor Kate Drummond – Royal Melbourne Hospital
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Dr Alison Wray – Royal Children’s Hospital / Australasian Shunt Registry
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Medtronic
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The Honourable Justice Garde – Victorian Supreme Court
We’re also in conversation with several other excellent speakers, and we’ll update the program as they’re confirmed.
Support HSA Through Recycling
We’re now a registered donation partner with the container deposit schemes in VIC, NSW, QLD, and WA. You can donate your bottle and can refunds directly to HSA. Click here for details on how you can donate through your recycling.
Peer Support Update
Due to low attendance, we’ve made the decision to discontinue the general hydrocephalus online peer support meetings. However, our Normal Pressure Hydrocephalus (NPH) peer support group will continue to run. Dates and details are available in this newsletter, on our website, and across our social media platforms.
A Note on Committee Availability
Our Vice President and Chair of the Welfare Committee are currently recovering from shunt-related health issues. We send them our heartfelt wishes for a smooth and speedy recovery. In the meantime, if you’ve been trying to contact them regarding HSA matters, please redirect your inquiries to me at president@hydrocephalus.org.au.
Wishing all our members and their families good health, and I look forward to seeing many of you at the conference in November.
Andrew Garde
President, HSA
HydroConference 2025
Earlybird ticket pricing ends soon!
HydroConference 2025 is a national gathering dedicated to shaping The Future of Hydrocephalus Care.
Over two inspiring days, we’ll explore the latest in medical advancements, connect with peers, and empower one another through shared knowledge and lived experience.
Shunt Registry Update
Last updated 9 July 2025
Data period for this report December 2016 – 9 July 2025
The registry now contains 7,511 records belonging to 5,427 distinct patients. Currently, 63 sites are authorized to provide data (2 more sites awaiting approval).
Demographics - Gender
49% Male
50.5 % Female
0.5% gender removed (partial opt-out)
Demographics - Age
63.5% admissions >= 18 years
35.1 % admissions < 18 years
1.4 % Date of Birth removed (partial opt-out)
Operation Type
4231 Insertions
2642 Revisions
267 Removals
Clinical Diagnosis
Four most common reasons for admission
Haemorrhage 22.2%
Congenital 17.9%
Tumour 16.8%
INPH 17.1%
Number of Admissions
4235 One admission
725 Two
259 Three
100 Four
103 Five or more
Hydro Warrior Spotlight
Every journey with hydrocephalus is unique, but no one has to face it alone. At the Hydrocephalus Support Association (HSA), we recognise the strength and determination of those living with hydrocephalus — our Hydro Warriors. From managing day-to-day challenges to facing surgeries and hospital stays, these individuals show incredible resilience in the face of a lifelong condition.
Hydrocephalus may be part of their story, but it doesn’t define who they are or what they can achieve. Hydro Warriors are living proof that with the right support, no hurdle is insurmountable. Together, we share their stories to raise awareness, build understanding, and remind everyone in the community — you’re never alone.
Aydan Casey
I was diagnosed with Hydrocephalus in-utero. Which meant that from birth it was "all-systems go". Luckily my mother had her support network, particular my maternal grandmother who would become my staunchest advocate. I was lucky also to have secured as my Neurosurgeon...
Mary Smith
Interview of Mary by Wendy Brown on 26 March 2025 This interview was conducted with Mary who was recently diagnosed with hydrocephalus and kindly agreed to share her experiences so far. When were you first diagnosed with hydrocephalus? What age group were you in? I...
Maryann Bownds
I don’t normal put this out there. But with not much information knowing about Hydrocephalus (40- 50 age group) and NO CURE!! I thought it was time say something……. In 2016 at 47 years old, I was emergency rushed by plane to Melbourne ( 3hrs away from my home). After...
Latest Articles
First minimally invasive endovascular shunt for adult normal‑pressure hydrocephalus enters clinical use (USA)
First Minimally Invasive Shunt for Adult Hydrocephalus Enters Clinical Use Adults living with normal‑pressure hydrocephalus (NPH) may soon have a new treatment option. In early 2026, neurosurgeons in the United States began treating NPH patients with CereVasc’s eShunt...
If I Ever get Out Of This Place
"If I Ever Get Out Of This Place" Helen O'Toole is a long-standing member of the Hydrocephalus Support Association who spoke at our HSA Conference November 2025 about her Hydro journey and eventual ETV operation (Video available on HSA website). Helen has recently...
Kitea – First-in-human safety and efficacy trials
The Kitea Sensor A paper has been published in Nature Communications relating to the first-in-human safety and efficacy trial of the Kitea Sensor in adults and children with hydrocephalus authored by Simon Malpas et al. The report delves into Long Term Brain Pressure...
Upcoming Meetings
We’re excited to extend an invitation to all Hydrocephalus Support Association (HSA) members for our upcoming Member Meetings.
Most of our meetings are held online, with some offering both in-person and online options, allowing greater flexibility for members to attend. These gatherings are a cornerstone of our community, fostering connections and facilitating shared experiences. Attendees will also gain insight into HSA initiatives, learn about our impact on the Hydrocephalus community in Australia, and discover ways they can contribute to our mission.