Welcome to the latest edition of the HSA newsletter, Connections.

Welcome to the Spring edition of the HSA newsletter. I hope all of our members have a great end to the year. In my column there is exciting news both for the association and my family.

I recently was engaged by Kitea health to test a beta version of the Kitea Sensor to try out which they paid for me to perform. This was outside of the body and involved testing how to take a measurement and the features and functions in the mobile app. Thanks to everyone who replied on Facebook and I incorporated it with my feedback into a 17-page report that I presented and discussed with Professor Simon Malpas over breakfast on the 9th of October when he was visiting Melbourne.

The next steps in development are it continues to be tested in more sheep and ethics applications and other regulatory paperwork is progressing on the phase 1 trial which just tests safety of the device, the trial will be on 20 people in Auckland, New Zealand next year. This will be a very limited group as they must be in shunt failure but able to consent to the trial. It will then have to proceed through phase 2 & 3 trials before the sensor will be generally available.

The Kitea Sensor

The Kitea Wand

Since the last newsletter we have had a number of new volunteers and I would like to welcome our new committee members and welfare officers.

Secretary – Michelle Goldsmith
General Committee Member – Adrian Zalcman
Welfare Officer – Heather Henderson.

I would like to thank them for putting their hand up to help the association.

In good news for my family my wife and I have welcomed another child this month, which means that I will be taking some paternity leave and hence will not be attending any of our end of year functions.

I would like to wish you all the best for the year and I wish a Merry Christmas or Happy Hanukkah for everyone who observes those celebrations.  

Andrew Garde

President, HSA

SHUNT REGISTRY UPDATE

SHUNT REGISTRY SHAPSHOT - NOVEMBER 2023

THERE ARE NOW 5,698 RECORDS IN THE REGISTRY FOR 4,173 UNIQUE PATIENTS

Data period for this report December 2016 – 18 October 2023

OPT-OUT FORMS

After you/your child’s surgery you will receive a Participant Information letter and an opt out form (the one you receive may look a little different from the one below). If you want you/your child’s information to be recorded in the Registry you do not have to do anything. If you wish, you can remove some or all of your information. No reason needs to be given.

Please remember to check the tick box corresponding to the information you want removed. If a form is received with only you/your child’s information but no opt out fields requested, this is considered a full opt out and no information is recorded in the Registry.

Any questions or comments? Please contact me via email at shunt.registry.com.au

CLICK HERE TO VIEW THE OPT OUT FORM

Information provided by Katrina Smith, Shunt Registry Manager (shunt.registry@nsa.org.au)

HYDRO WARRIOR SHOUT OUT

MEET BELLA

"October 2022 our daughter Bella out of nowhere started to experience headaches but not the usual type, these ones came on super fast super strong and only lasted for a couple of seconds. At first we didn’t really take Bella’s headaches too serious as they wasn’t very frequent and we had relocated from Melbourne to Queensland so we initially put her headaches down to maybe her experiencing some stress what with moving schools and leaving her best friends. But then around early December these headaches become more frequent which were so painful they would stop Bella from whatever she was doing and she would hold her head and literally scream.

We then booked her an appointment with a GP who straight away referred Bella for an MRI scan which was the next day. We received Bella’s MRI scan results the following day. Our GP explained that Bella had a blockage in her brain and that her brain was filled with a large amount of fluid and that she needed to have brain surgery asap to release the fluid, this was an complete shock to myself and Bella’s father because otherwise she was a healthy and well child.

Bella was admitted to Queensland children’s hospital on 23rd December where at first she was undergoing observations, one of the neurosurgeons actually said that they cannot believe Bella presented at the hospital with no symptoms other than previous headaches, with the amount of fluid on her brain they found it hard to believe that she hadn’t yet collapsed or had any other symptoms. The neurosurgeons words were (well the scan doesn’t lie) I think this is why we found it so hard to believe at first.

So on Christmas Day December 2022 (which is also Bella’s birthday) she spent her 11th Birthday having brain surgery, the surgeon came in from having his Christmas breakfast with his family (wearing his Christmas shirt) he said to Bella "I’m so sorry that we couldn’t wait until your birthday was over but it’s too urgent" so Bella underwent ETV surgery spending the next 6 days in hospital and has since recovered really well physically and mentally.

Forever grateful for the care Bella received at the Queensland children’s hospital. The whole team were truly amazing."

-by Mollie & Liam, Bella’s parents

CLICK HERE TO SHARE YOUR STORY

THE LATEST ARTICLES

Having a scan? A guide to medical imaging

A resource by www.arpansa.gov.au.

Medical imaging enables earlier and less invasive diagnosis for numerous medical conditions. Different types of medical imaging examinations are available to help medical practitioners identify what’s happening inside the body and a number of them involve radiation.

CLICK TO READ MORE

Do you have a topic you'd like us to write about? Email news@hydrocephalus.org.au with your suggestions!

upcoming meetings

We're excited to extend an invitation to all Hydrocephalus Support Association (HSA) members for our upcoming Member Meetings.

These in-person gatherings are a cornerstone of our community, fostering connections and facilitating shared experiences. Attendees will also gain insight into HSA initiatives, understand our impact on the Hydrocephalus community in Australia, and learn ways they can contribute to our mission.

No matter where you are in your Hydrocephalus journey—whether newly diagnosed, a long-term patient, or a support person—we warmly welcome you to join us at our next meeting.

To ensure everyone can participate, we'll also offer a Zoom option for those unable to attend in person.

Melbourne Christmas Meeting

Sunday 12 November

11.45am onwards

Notting Hill Hotel

260 Ferntree Gully Road

Notting Hill 3168

Parking available onsite

Food and drink available to purchase

View Facebook Event: Click here

View ZOOM link: In Person only

Sydney Christmas Meeting

Sunday 26 November

12pm onwards

Granville Activity Centre (Scouts)

2 Arthur Street

Granville 2142

Parking available onsite

BYO food and drinks

View Facebook Event: Click here

View ZOOM link: In Person only

welfare CONtacts

SYDNEY

Jan Steinfurth

02 9586 1057

JSteinfurth@hydrocephalus.org.au

MELBOURNE

Andrew Garde

0438 172 141

president@hydrocephalus.org.au

BRISBANE

Wayne Pene

0423 412 912

wpene@hydrocephalus.org.au

support resources

Anti Discrimination NSW

02 9268 5544

complaintsadb@justice.nsw.gov.au

https://antidiscrimination.nsw.gov.au/

Brain Injury Association

Freecall 1800 802 840

Carers’ Task Force Australia

02 9532 0496

Northcott Spina Bifida Group (NSW)

02 9890 0100
www.northcott.com.au/services/spina-bifida-services

Life Support Group (Campbelltown)

02 4633 4187

Royal Institute for Deaf & Blind Children

02 9871 1233

Health Care Complaints Commission

02 9219 7444 | Toll Free 1800 043 159
http://www.hccc.nsw.gov.au

REQUEST A MEDIC ALERT CARD

If you require a Medic Alert Card for Hydrocephalus, please send your information to Jan at jsteinfurth@hydrocephalus.org.au. Jan will need to know if you have a shunt or a 3rd Ventriculostomy. Medic Alert cards are available upon request to all HSA Members!

MEET OUR HSA Committee Members

Andrew Garde

President

0438 172 141

president@hydrocephalus.org.au

The Hydrocephalus Support Association is run by a committee, who are elected into their positions each year at the Annual General Meeting.

Everyone who works in the Hydrocephalus Support Association is a volunteer.

Most of the committee members work full or part time in paid employment, and they fit in their commitments to the HSA in addition to work and family life.

Robyn Campey

Vice-President

CLICK TO EMAIL

Brian Millar

Treasurer

CLICK TO EMAIL

Erin Millar

Welfare Chair

CLICK TO EMAIL

Andrew Garde

Welfare Officer VIC

CLICK TO EMAIL

Kerryn Csik

Committee Member

CLICK TO EMAIL

Wendy Brown

Public Officer

CLICK TO EMAIL

Bree Henry

Social & Newsletters

CLICK TO EMAIL

Michelle Goldsmith

Secretary

CLICK TO EMAIL

Jan Steinfurth

Welfare Officer NSW

CLICK TO EMAIL

Wayne Pene

Welfare Officer QLD

CLICK TO EMAIL

Heather Henderson

Welfare Officer QLD

CLICK TO EMAIL

Dean Johnston

Welfare Officer VIC

CLICK TO EMAIL

Adrian Zalcman

Committee Member

CLICK TO EMAIL

VOLUNTEERS WANTED

We are on the look out for some more volunteers here at the HSA! If you feel you would be suited to one of the available roles, please reach out to our President, Andrew Garde at president@hydrocephalus.org.au for more information.

Welfare Officers

Our Welfare Officers are available to support those with Hydrocephalus and their families. This wide-ranging role helps to educate and empower and will assist the HSA in hosting Monthly Online Peer Support Meetings, as well as other Welfare initiatives. To apply, please register your interest with the HSA President, Andrew Garde by email at president@hydrocephalus.org.au.