President’s Column
Welcome to the February edition of the HSA newsletter. I hope you all had a great and positive summer.
Upcoming HSA Events
We have several events coming up, including virtual peer support meetings, our Melbourne and Brisbane in-person meetings, and the Annual General Meeting (AGM) on February 23. These are great opportunities to connect with the hydrocephalus community, share experiences, and find support.
Our AGM will be held on Sunday, 23rd February at Granville Scout Activity Centre. If attending in person, please arrive by 1:45 PM as the meeting will start at 2:00 PM. This will be a hybrid meeting, so you can also join online.
Nomination forms are available below if you wish to join the committee. If you have any questions or need help getting a proposer and seconder, please email election@hydrocephalus.org.au. The nomination deadline is 16th February at 7 PM AEDT.
We are also trialling virtual peer support meetings this year to reach members who cannot attend in person. There will be two types:
- Normal Pressure Hydrocephalus (NPH) support – February 5 @ 8:00 PM AEDT
- General hydrocephalus support – February 19 @ 8:00 PM AEDT
New HSA Website & Membership Updates
We’re excited to launch the new HSA website at hydrocephalus.org.au! The updated platform makes it easier for new members to join and access resources.
Existing members, keep an eye on your inbox—you’ll soon receive an email asking you to set up your password to access the new site. If you experience any issues, please contact us at info@hydrocephalus.org.au.
Upcoming HSA Conference
Mark your calendars! The next HSA Conference will be held on 8-9th November at Mantra Melbourne Airport. We are currently securing speakers, and once finalized, ticket sales will open. Stay tuned for updates!
Donate to the HSA from Your Recycling
We are now a donation partner for the container deposit schemes across VIC, NSW, QLD, and WA. Simply include the Scheme ID listed above with your container deposit to an approved return point and the refund will be donated to the HSA.
- QLD: Containers For Change – Scheme ID: C11480635
- NSW: Return And Earn – Donate to charity via APP or RVM
- VIC: CDS Vic – Scheme ID: C2000031779
- WA: Containers For Chagne – Scheme ID: C11480635
I hope you all had a happy and healthy break over Christmas and New Year.
Andrew Garde
President, HSA
Join The Committee At Our Upcoming AGM
Our Annual General Meeting (AGM) is just around the corner, and we’re looking for passionate members to join our committee! This is your opportunity to contribute to the direction and impact of the Hydrocephalus Support Association.
AGM Details:
📅 Date: Sunday, 23rd February 2025
🕑 Time: 2:00 PM AEDT
📍 Location: Online via Zoom
- Deadline: Submit nomination forms by Sunday, 16th February 2025, at 7:00 PM AEDT via email to election@hydrocephalus.org.au.
- Eligibility: Financial members only. If you need help finding nominators, contact us at election@hydrocephalus.org.au.
- Nominate on the Day: You can also nominate during the AGM.
For more information or to discuss a role, email info@hydrocephalus.org.au.
Neurosurgical Care Survey
The HSA’s Neurosurgical Care Survey is a crucial opportunity to share your experiences and insights as someone living with or affected by hydrocephalus. Your feedback will help the Hydrocephalus Support Association identify gaps in neurosurgical care, advocate for better services, and drive positive change within the community. Your voice matters—click the link below to complete the survey and contribute to shaping a brighter future for those living with hydrocephalus!
Shunt Registry Update
Last updated 31 December 2024
Data period for this report December 2016 – 31 December 2024
The registry now contains 6,921 records belonging to 5,023 distinct patients. Currently, 63 sites are authorized to provide data (2 more sites awaiting approval).
Please note: In November we included details for a pilot project examining Patient Reported Outcomes for patients with INPH. Unfortunately we have had to delay the launch of this project. Further updates will be provided in future newsletters.
Demographics - Gender
48.5% Male
50.5 % Female
0.9% gender removed (partial opt-out)
Demographics - Age
Under 18 Years Old: 63.9% participants & 71.1% admissions
Over 18 Years Old: 35.2% participants & 29.2% admissions
1.3 % Date of Birth removed (partial opt-out)
Operation Type
3872 Insertions
2436 Revisions
240 Removals
114 ETV
Clinical Diagnosis
Four most common reasons for admission
Haemorrhage 22.3%
Congenital 17.6%
Tumour 16.5%
INPH 17.0%
Number of Admissions
3922 One admission
689 Two
229 Three
91 Four
92 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...
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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...
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February 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.