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

I hope you enjoy the summer edition of the HSA newsletter. I hope you all have a great and positive summer.

In sad news I announce the resignation of Michelle Goldsmith our secretary this is due to health issues. I thank her for her service to the HSA and send our best wishes.

We now have a casual vacancy for a secretary until the elections at the end of Feburary. If you can help then please let me know, president@hydrocephalus.org.au

Donate to the HSA from your recycling.

We are now a donation partner for the container deposit schemes across VIC, NSW, QLD & WA.

NSW

Look us up in the return and earn app and scan the barcode on the return machine.

VIC

Our Victorian CDS ID and barcode can be used at machines/depots in all regions to find us.

QLD

Scan the barcode on the return machine to donate to us.

We are purchasing more portable video conferencing equipment for Queensland and New South Wales, this will improve the remote viewing experience for people dialling in remotely. The equipment includes a camera and wirelessly connected microphones

We are also heading to the end of the year, we will hold a number of get togethers.

QLD – Regular meeting at Nundah library 2-4pm Saturday 2nd November 2-4pm
VIC – The Glasshouse Caulfield Bistro, 31 Station St, Caulfield East VIC 3145 1:15 pm to 3:00pm Sunday 10th November 2024. Bookings essential via info@hydrocephalus.org.au
NSW – Christmas BBQ, Granville Activity Centre (Scouts), 2 Arthur Street, Granville. Sunday 24th November 12:00pm bookings essential via vicepresident@hydrocephalus.org.au

I hope you all have a great end of year and a happy new one and for those who celebrate it a Merry Christmas or Happy Hanukkah.

Andrew Garde

President, HSA

SHUNT REGISTRY UPDATE

UPDATED 10 OCTOBER 2024

Data period for this report December 2016 – 10 October 2024

The registry now contains 6,683 records belonging to 4,870 distinct patients. Currently, 63 sites are authorized to provide data (2 more sites awaiting approval).

GENDER

48.5% Male

50.7 % Female

0.8% gender removed (partial opt-out)

AGE

63.9% participants >= 18 years

71.1% admissions >= 18 years

35.2 % participants <18 years

29.2 % admissions < 18 years

1.3 % Date of Birth removed (partial opt-out)

ADMISSIONS

3813 One admission

666 Two

216 Three

88 Four

87 Five or more

OPERATION TYPE

CLINICAL DIAGNOSIS

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

HYDRO WARRIOR SHOUT OUT

MEET MINNIE

"I’m 23 and have just had my 4th shunt revision. My last shunt lasted me 18 years with no complications and I truly thought maybe I was one of the lucky ones and my shunt was going to last me forever.

I was wrong and after a flight away on holiday my unknowingly broken shunt at the time couldn’t handle the pressure in the plane. I was 5 when I had my last shunt revision so I had no idea the pain I was in was my shunt not working, I couldn’t remember the last time.

The pain felt like I was having a hangover and it just wouldn’t ease. My biggest sign was I couldn’t lift my head up without vomiting. I thought I was living a completely normal life like everyone else before my body reminded me I wasn’t.

I’m in it with every other hydro warrior!"

CLICK HERE TO SHARE YOUR STORY

THE LATEST ARTICLES

Sending your Hydro Warrior to Daycare

By Hydro-Mum, Kerryn Csik

Starting daycare can feel overwhelming, especially when your child has unique needs. But Australia has a wealth of options designed to welcome and support children with all kinds of needs in a safe, caring, and inclusive environment. Here’s a handy checklist to help you choose a daycare where your child can feel happy and thrive.

Click here 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 2 November

2pm - 4pm

Nundah Library

1 Bage Street, Primrose Ln

Nundah QLD 4012

Parking available onsite

View Facebook Event

Click here to sign up for the ZOOM meeting

Melbourne Meeting

Sunday 10 November

1:15pm - 3:00pm

Bookings essential via info@hydrocephalus.org.au

The Glasshouse Caulfield Bistro, 31 Station St, Caulfield East

Parking available onsite

View Facebook Event

Sydney Meeting

Sunday 24 November

12pm onwards

Bookings essential via vicepresident@hydrocephalus.org.au

Granville Activity Centre (Scouts), 2 Arthur Street, Granville

Parking available onsite

View Facebook Event

welfare CONtacts

BRISBANE

Erin Millar

0434 103 814

qld@hydrocephalus.org.au

SYDNEY

Jan Steinfurth

02 9586 1057

JSteinfurth@hydrocephalus.org.au

MELBOURNE

Andrew Garde

0438 172 141

president@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

Kerryn Csik

Communications

CLICK TO EMAIL

Sean Cooney

Webmaster

CLICK TO EMAIL

Wendy Brown

Public Officer

CLICK TO EMAIL

Bree Henry

Communications

CLICK TO EMAIL

Andrew Garde

Welfare Officer VIC

CLICK TO EMAIL

Erin Millar

Welfare Officer QLD

CLICK TO EMAIL

Jan Steinfurth

Welfare Officer NSW

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.