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

Welcome to the Summer edition of the HSA newsletter. I hope all of our members have a great summer break.

In good news I have recently been notified by kitea that the phase 1 trial I mentioned in the last newsletter has been approved and will probably start in April this year. This will be a very small trial limited to people who can give informed consent in Auckland New Zealand and consist of 10 adults followed by 10 children. This trial is the first step to get the device approved in humans and only confirms that the sensor is safe for use in humans, it does not prove the efficacy of it.

The Kitea Sensor

The Kitea Wand

The annual general meeting will be held on the 25 th of February in Sydney and will be a hybrid meeting allowing people not in Sydney to attend via zoom.

There is information in this newsletter about nominating for roles at the AGM, the roles on offer are:

President
Vice President
Treasurer
Secretary
Communications x 2
Webmaster
General Committee Member x 2
Public Officer
Welfare Chair
Welfare officers one or more per state

If you don’t know another member to act as a seconder on your nomination form then please let the committee know by emailing and sending your form into election@hydrocephalus.org.au.

Since the last newsletter we have had a new volunteer join the committee. I welcome our new general committee member Danni Heynes. Danni’s family have been longstanding members and I would like to thank Danni for joining the committee.

In the last newsletter I announced that I was imminently expecting the birth of my 2nd child and she arrived soon after I wrote that column. Annalise Ruby Garde was born on 20/10/2023 and is very healthy. I took some paternity leave from the HSA but am back on deck.

The HSA has been relatively quiet over December/January as the committee took time to take a break and spend time with their families and recharge for the new year.

Andrew Garde

President, HSA

2024 AGM NOMINATIONS

The Hydrocephalus Support Association AGM election will be held on 25 February from 2.00 pm and will be online via Zoom. During the meeting we will review all positions available and then the group will move forward in making those decisions. If you would to apply for one of the committee positiions, please complete the below form and return it as soon as you can.

Click here to download a nomination form

Notes about nominations

To nominate for a position, complete the Nomination Form and submit it by Sunday 18th February 2023 7:00pm by email to election@hydrocephalus.org.au
As a part of the nomination you will need two members to nominate you. If you do not know two members, please get in touch via election@hydrocephalus.org.au and we would be happy to assist you get the required proposer and seconder.
Nominations can also be made at the AGM
If there is more than one nomination for a position, an election will be held and nominees will be able to address the meeting about their candidacy
Nominations are limited to financial members of the association
All positions are for a single person unless otherwise noted below
Please note Welfare Officers must reside in the state they apply for
Some positions are geographically limited due to legal or other reasons
If you would like to have a discussion about any of the roles on offer please contact info@hydrocephalus.org.au

The positions available at this election are:

President
Vice President
Secretary
Treasurer
Newsletter Editor
Committee Member (2 positions)

Public Officer (1 - must reside in NSW)
Communications Officers (2 positions)
Welfare Committee Chair
Welfare Officer - QLD (1+ Available)
Welfare Officer - NSW (1+ Available)
Welfare Officer - VIC (1+ Available)

Welfare Officer - TAS (1+ Available)
Welfare Officer - ACT (1+ Available)
Welfare Officer - NT (1+ Available)
Welfare Officer - WA (1+ Available)
Welfare Officer - SA (1+ Available)

SHUNT REGISTRY UPDATE

UPDATED 16 JANUARY 2024

THERE ARE NOW 5,948 RECORDS IN THE REGISTRY FOR 4,342 UNIQUE PATIENTS

Data period for this report December 2016 – 16 January 2023

64 sites are currently approved to contribute data, including 57 in Australia and 7 in New Zealand.

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 VICKY

"As a baby and young child I suffered from Epilepsy. Around age 4 I was diagnosed with Hydrocephalus. Once I got my shunt the seizures stopped and since then I have only had 5 shunts in my life. I am now 52 years old and doing well.

I do have some minor disabilities, but I don’t let them get me down OR stop me from doing anything. I just push on with life.

I do a lot of volunteering, from working at the children’s hospital and with Vision Australia, and I have also done many international events - most recently THE FIFA Women's World Cup!"

-by Vicky

CLICK HERE TO SHARE YOUR STORY

THE LATEST ARTICLES

Back to school tips

An article by Erin Garde

And so, back to school. Up and down this country of ours, many parents and carers of our youngest (and mightiest) hydro warriors are breathing a sigh of relief tinged with worry. How’s it going to go this year? What will it be like for them in a new class, a new grade, with a new teacher? How can I help my child learn and become more independent?

CLICK TO READ MORE

The Kitea Sensor: An Update

An article by Bree Henry

In the dynamic realm of medical technology, Kitea Health, under the guidance of Simon Malpas, is at the forefront of developing groundbreaking sensor technology poised to revolutionize care for individuals with hydrocephalus.

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.

Brisbane Meeting

Saturday 3 February

2pm onwards

Nundah Library

1 Bage Street, Primrose Ln

Nundah QLD 4012

Parking available onsite

View Facebook Event

Melbourne Meeting

Sunday 11 February

2pm onwards

Hawthorn Library - Room 2

584 Glenferrie Rd

Hawthorn VIC 3122

Parking available onsite

View Facebook Event

Click for ZOOM link

Sydney Meeting & AGM

Sunday 25 February

1:45pm onwards

Ermington Scout Hall

367 Kissing Point Rd

Ermington NSW 2115

Parking available onsite

View Facebook Event

Click for ZOOM link

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

We all find ourselves in need of support from time to time. See below for some valuable resources.

SYNAPSE - Australia's Brain Injury Organisation

Call 1800 673 074 or complete the contact form online

Carers’ Australia

Call (02) 6122 9900 or visit their website.

Beyond Blue

Call a counsellor on 1300 22 4636 or click here to chat to a counsellor online.

Lifeline

Call 13 11 14 or click here to use the online chat.

Next Sense

This service supports people with hearing and vision loss. Click here to find your nearest centre and their contact details.

Discrimination

If you are experiencing discrimination, you can make a complaint via the Australian Human Rights Commission: https://humanrights.gov.au/complaints

There are also State/Territory Human Rights Commissions that can provide more specific assistance. If you are experiencing discrimination, you shouldn't be! Be sure to seek advice if needed.

Learn more here: https://www.fwc.gov.au/discrimination

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

Marketing

CLICK TO EMAIL

Wendy Brown

Public Officer

CLICK TO EMAIL

Bree Henry

Marketing

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

Danni Heynes

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.