Bunnings BBQ Fundraiser

Join us on the 27th of July at Kingsgrove Bunnings Warehouse for a fun-filled Sausage Sizzle BBQ Fundraiser! Enjoy delicious sausages, refreshing drinks, and great company while supporting the Thalassaemia and Sickle Cell Society of NSW. If you can’t attend, don’t forget that you can still contribute by donating to help cover the costs and maximize our fundraising efforts.

International Thalassaemia Day & 2024 Nurse of the Year Award

Celebrate Exceptional Nurses with Us!

World Thalassaemia Day Celebration

Date: 8th May 2024
Time: 6:00 PM – 8:00 PM
Location: G06E/138 Carillon Ave, Newtown NSW 2042

Join us as we honour and appreciate the remarkable nurses who play a vital role in the well-being of our patients and their families.

This special event will also celebrate:

International Thalassaemia Day

International Nurses Day (12th May)

Our Relocation to the New Office

2024 Nurse of the Year

Booking is Essential!

Click Here to Reserve Your Spot!

Finger food and refreshments will be provided!

For more information contact us at coordinator@thalnsw.org.au

Join Us for an Unforgettable Evening!

Help us find our Nurse of the Year

2024 Nurse of the Year🌟🏥🩸
We are back again to celebrate the exceptional dedication and care provided by nurses as we approach
World Thalassaemia Day on the 8th of May and International Nurses Day on the 12th of May.
We invite you to nominate a nurse from your treatment centre who has made a difference in your life.
Let’s honour and appreciate these remarkable individuals who play a vital role in the well-being of our patients and their families.
How to Nominate: Nominate a nurse from your treatment centre to express your gratitude for their hard work. Share with us, in 500 words or less, why you believe this nurse deserves recognition as our 2024 Nurse of the Year.
Selection Process: A panel of consumers will judge the nominations, and the winner will be announced on World Thalassaemia Day – May 8.
Submission Details: Fill out and submit the form online,

Nurse of the Year Nomination Form

Which best describes you?(Required)
I give permission for my nomination to be quoted in the Thalassaemia & Sickle Cell Society of NSW’s social media, website or email, for the purpose of recognising the winner and promoting this initiative(Required)
I wish to keep my name and associated details confidential(Required)

Or;

Download and send your completed nomination form (PDF below) to Coordinator@thalnsw.org.au or PO Box M120, Camperdown NSW 2050.
Nominations close at 5 pm on 6 May 2024

“NURSE OF THE YEAR” NOMINATION FORM

Thank you, George Houssos, President.

FAQS

Who can nominate a nurse? 
Nominations will be accepted from thalassaemia, sickle cell and haemoglobinopathy patients, their carers and family members. We will also accept nominations from staff members who work with haemoglobinopathy nurses, however they cannot nominate themselves.

Will my nomination be confidential?
If you wish to keep your name and any personal details confidential, please tick our confidentiality box on the nomination form.

Can I nominate more than one nurse?
Of course! Share the recognition and fill out an individual nomination for each nurse. Unfortunately, we are unable to take nominations for ‘teams’ at this team.

Who is eligible? 
Nominees must be a qualified individual currently employed as an enrolled or registered nurse in Australia, who works within haemoglobinopathy treatment.
I have a question or I need further informationPlease contact our President, George Houssos – president@thalnsw.org.au

Annual Membership

Thank you for considering joining our community.

Our memberships are only $20 and are valid for 12 months and provide access to a range of support services and resources.

Learn more and become a member here.

Arthur Bozikas’ new autobiography – Iron Boy

Over 8,600 needle sticks, 700 blood transfusions, and 2,200 blood packs later and Arthur Bozikas OAM is defying the odds of being born with thalassaemia major in the 1960s. “Hope, survival, and prospering against the odds” is a strong theme in his new autobiography Iron Boy: Surviving Beta Thalassaemia Major. 

Arthur is second-generation Greek Australian. His Lafka- born mother and Patra-born father emigrated in 1957 and 1956, respectively, and married around a year into living in Sydney.

By the age of one, Arthur was diagnosed with beta Thalassaemia major and by the age of four he had his spleen removed. By 20 years of age he was “getting ready for his life to be over”. Little did he know a new life-saving drug was about to become available, “I didn’t get Desferrioxamine until I was 21 years old, which was in 1981, 1982,” Bozikas says.

By this point, Arthur had unexpectedly outgrown the treatment ward at Sydney Children’s Hospital, Camperdown, “I was going to the Children’s Hospital because [me and my friends Peter and George] were the first in our generation to live at that particular age and to really have normal lives because we were using Desferrioxamine,” he says. “I started using Desferrioxamine with an infusion pump and I had no commitment about compliance because I started this late. It wasn’t until death was imminent at the age of 30, my commitment about compliance resulted to 100%”.

Arthur was married with two kids by the time he made the courageous move from Sydney Children’s Hospital, Camperdown to Royal Prince Alfred Hospital.

He says while Desferrioxamine led him to a healthier life, it was a hospital appointment which really changed his outlook on life.  I was horrified because they said to me, ‘Look, the damage is done… We’re going to put you on this drug anyway’,” he says. “I keep on recalling the fact that they said that ‘the damage is done… Why should I bother putting myself in any more pain and discomfort when I’m going to pass away anyway?.. Why continue?”

Twenty years later, this appointment would continue to leave a lasting impact on him until his wife – who he describes as the “light in his darkness” – would put his life into perspective and inspire him to enrol at Western Sydney University (UWS).

Arthur went on to study a number of courses including a Master of Management.

“It wasn’t until that day I went to uni that I put those heavy bags down that I had carried all my life … and just put all that behind me,” he says.

Arthur went from UWS alumni to tutor and spent seven years teaching there and eight years teaching at TAFE. In 2016, he was awarded an Order of Australia for his years and dedication as CEO of disability service organisation, Self Advocacy Sydney. He is also a long standing member of the Thalassaemia & Sickle Cell Society of NSW.

Arthur has been interested in writing Iron Boy for over 20 years.  “When I was at uni, I did some creative writing courses so I could write my autobiography back then.” He  has since published two fiction works, The Book Glasses and Black Ops: Zulu (Tom Stiles Thrillers Book 1) and we are eagerly awaiting the launch of his autobiography, Iron Boy, set to hit the shelves shortly.

For more information, be sure to visit https://arthurbozikas.com/books/iron-boy/

Pfizer vs AZ

Hi guys 👋

There has been a lot of talk about Pfizer vs Astra when it comes to vaccines. Based on medical advice given to many of our patients, our current stance is we are advocating that those patients with Thalassaemia, Sickle-Cell Anaemia and other haemoglobinopathies be prioritised to receive the Pfizer vaccine if they want it.

Despite falling into the 1B category, many of our patients are still unable to access the Pfizer vaccine. We continue to encourage people to talk to their clinicians about their personal situation, however, we don’t want anyone in our Thal Soc community who would like the vaccine, to miss out due to shortages.

So, we are asking the following questions –

Would you like to have the vaccine?

Do you have any concerns?

What support would you like to see from us around this issue?

Please email – Coordinator@thalnsw.org.au

We would very much like to hear your thoughts on this and what is currently important to you with regards to Covid19.

We have a YouTube Channel!

Tanya our Counsellor has been busy creating and uploading content to help us all realize our full potential. With short info clips on mental health topics such as decision making and supporting our children during isolation, you can find some basic ideas to help you thrive.

You can check it out here –

https://www.youtube.com/channel/UCmoEEgipfa5bsR52j-MYUKA

Content suggestions are always welcome – Please reach out to let us know what you would like to see our next video on.

Coordinator@thalnsw.org.au

Monash University beta thalassaemia fertility and pregnancy study

Monash University is currently conducting a study to better understand what men and women with beta thalassaemia know and think about fertility and pregnancy. We want to use this information to design educational materials to help people with thalassaemia better understand how thalassaemia affects fertility, and how to achieve a safe and healthy pregnancy!

All we need you to do is fill out an online survey. It will only take 15-20 minutes to complete and will ask you about your experiences and knowledge about contraception, fertility and pregnancy with regards to thalassaemia. The survey responses are completely confidential and anonymous. We would love to have as many people as possible, both men and women, fill out the survey because the more people we have complete the survey, the better we can make the educational materials.

We are also offering 10 people with thalassaemia who complete the survey the chance to win a $100 VISA voucher as a thank you for their time and help with this project.

To access the survey please click on the link below. You can complete the survey anytime on your computer, phone or any other device! Additionally, if you know anyone who would be interested in participating, please pass the link one!

Link to survey – https://is.gd/thalstudy

NSW Parliamentary Inquiry into Health Services in South Western Sydney

Advocacy has always been on our agenda and continues in 2020 with our president George Houssos who spoke alongside Dr Anthony Brown of Health Consumers NSW at the NSW Parliamentary Inquiry into Health Services in South Western Sydney hearing in July.

George addressed issues that South Western Sydney Local Health District thalassaemia and sickle cell patients face in accessing comprehensive haematology treatments and discussed the need for greater resources and support at the Liverpool Hospital treatment centre.

If you have thoughts, feedback or questions on haemoglobinopathy treatments in this area, please reach out to Coordinator@thalnsw.org.au