President’s Column 17 April 2026
Welcome to the Winter edition of the HSA newsletter.
The recordings from our last conference will soon be added to the members section of the website so that all paid members will be able to access them.
The HSA was invited by Integra LifeScience to present at their sales conference in Melbourne. I attended and presented on my life with hydrocephalus, what the HSA is about and discussed the shunt registry. The attendees listened well and asked great questions.
Our May meeting will be a presentation about who and how to qualify for the NDIS, how to appeal and the changes coming to it. It will be in person in Melbourne in hawthorn library meeting room 2 and also virtually on zoom. The August meeting will be a presentation from Integra about their shunts and will be in person in Brisbane and virtually for everyone else. There will also be a virtual presentation by Kitea Health in October.
A peer reviewed paper has been published in nature communications on the results of the Kitea sensor safety trial. The trial was successful and the device has had no adverse incidents to date. There are a couple of interesting clinical results, it detected a shunt failure in a child, A person with NPH had their shunt valve set to virtually off due to over drainage, the sensor showed an increase in pressure and the valve was adjusted and finally a child had potential symptoms of shunt failure and was taken to hospital where traditional screening showed that this was not a shunt failure, the kitea sensor also confirmed that it was not a high pressure issue and it was found that it was influenza.
The AGM was conducted at the end of February the following people were elected
Election of Office Bearers
President – Andrew Garde
Vice President – Robyn Campey
Secretary – Wayne Pene
Treasurer – Brian Millar
Newsletter Editor – Sean Cooney
Marketing – Kerryn Csik
Committee members – Narelle Janke, Tony Harris
Public Officer (must be a NSW Resident) – Sean Cooney Welfare Chair – Erin Millar
Awareness & Fundraising – Narelle Janke, Sean Cooney, Caroline Jollow
Election of Non Office Bearers
Welfare Officer QLD – Brian & Erin Millar
Welfare Officer NSW – Caroline Jollow, Robyn Campey, Janice Steinfurth
Welfare Officer ACT – Vacant
Welfare Officer VIC – Andrew Garde
Welfare Officer TAS – Vacant
Welfare Officer NT – Vacant
Welfare Officer WA – Vacant
We have had one resignation from the committee since the election from Tony Harris.
Donate to the HSA from your recycling. We are now a donation partner for the container deposit schemes across VIC,NSW, QLD & WA.
VIC
Our Victorian CDS ID and barcode can be used at machines/depots in all regions to find us in the app.
NSW
Look us up in the return and earn app and scan the barcode on the return machine.
QLD
Scan the barcode on the return machine to donate to us
WA
I would like to congratulate Bree Whittle and her family on the safe arrival of a daughter called Audrey. We wish them all the best for their future together.
I wish all our members and their families good health and hope you had a happy and safe holiday period.
Andrew Garde
President.
Shunt Registry Update
Last updated 15 April 2026
Data period for this report December 2016 – 15 April 2026
The registry now contains 8,590 records belonging to 6185 distinct patients. Currently, 64 sites are authorized to provide data (8 more sites awaiting approval).
Since the last Newsletter 2 more hospitals have been fully approved:
Concord and Repatriation Hospital
Jessie McPherson Private Hospital
Site approvals have been submitted or in the process of for
Chris O’Brien Lifehouse
Newcastle Private Hospital
Melbourne Private Hospital
Dunedin Hospital (NZ)
Epworth Richmond
Epworth Freemasons
Epworth Geelong
Darwin Hospital
The 2024 annual report has been published and can be found at https://shuntregistry.nsa.org.
Demographics - Gender
49.3% Male
50.2 % Female
0.5% gender removed (partial opt-out)
Demographics - Age
64.5% admissions >= 18 years
33.7 % admissions < 18 years
1.8 % Date of Birth removed (partial opt-out)
Operation Type
4871 Insertions
2996 Revisions
296 Removals
Clinical Diagnosis
Four most common reasons for admission
Haemorrhage 21.8%
Congenital 17.9%
Tumour 15.7%
INPH 17.6%
Number of Admissions
4818 One admission
829 Two
303 Three
114 Four
116 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.