Creating positive awareness for XYY SYNDROME
What a fantastic evening celebrating our years achievements, thank you to everyone for your amazing ongoing support.
Creating positive awareness for XYY Syndrome through better understanding
The Telethon Kids Institute is an Australian medical research institute focused on the prevention of paediatric disease and the development of improved treatments to improve the health and wellbeing of children.
Today we were lucky to be invited for a tour of the Institute and spoke with Prof.Terry Johns Head of the Telethon Kids Institute Cancer Centre since 2017
The journey for XYY in our family has been almost 10 years. Over this time I have taken on the role to help create a more positive image around XYY Syndrome. When I first realised there was a huge need for support around this syndrome I couldn’t help but find ways to get the information out to the public in the hope of supporting those who need that extra support including our family.
With little to no information out there on XYY Syndrome, my family and I decided to start the XYY Syndrome Association of Australia Inc. to generate resources to hand out.
XYY is a huge part of my life’s journey and I will continue to create positive steps for the future of XYY Syndrome.
It’s time to take XYY to a new level and get information out on a larger scale, our association is not funded for any of our projects and this needs to change.
My next goal is to source funding to help our Association to the next stage.
One step at a time we will make a difference!
Thank you to those who nominated me for these WA awards, this is a great opportunity to be apart of this amazing event and a fantastic platform to share more understanding around XYY Syndrome.
Today marks 2yrs for our Association
XYY Syndrome Association of Australia Inc. will continue to create positive awareness for XYY Syndrome and connect the XYY community.
Thank you for all your ongoing support.
I am very proud to have been nominated and a finalist for the Australia Day awards Mandurah WA, Citizen of the Year award.
Just to be nominated is an amazing feeling.
XYY Syndrome Association of Australia Inc. (WA – Not for profit for XYY Syndrome)
One step at a time our family and I have worked towards connecting the XYY community and having this syndrome recognised as needing extra support within the educational system. I would like to say a huge thank you to our committee for their ongoing efforts and support on this journey. David Gilkes Anne-Marie McArdle Vanya Almeida Win Gilkes Ken Gilkes this certificate of achievement goes to our team.
Another step forward creating positive awareness for XYY Syndrome –
WA Regional Achievements and community awards. Under the Community Tab -Community Service award
I’m very proud to say I was nominated for an award and had the opportunity to attend the Gala dinner to receive a certificate of achievement for creating positive awareness for XYY Syndrome.
What an amazing day at our Western Australian Charity Launch.
We had fantastic support from our local businesses around Lakelands and Mandurah WA.
When creating positive awareness for XYY Syndrome, it is very important to have the community behind us.
With your help, you can give support to the XYY community by showing them they are not alone.
A special thank you to Lakelands Library for their on going support throughout the XYY journey.
Thank you to everyone that attended, you helped create that next stepping stone for positive awareness for XYY Syndrome.
One step at a time we will make a difference!
MEDIA RELEASE: 5/7/19
WHY THE EXTRA CHROMOSOME?
Newly accredited W.A. Charity, XYY Syndrome Association of Australia Inc., invites you to learn more about this rare genetic syndrome at their launch event on Tuesday 23rd July at Lakelands Library and Community Centre.
Chairperson XYY Syndrome Association of Australia Inc., Amber Gilkes said her Association was championing the awareness for this syndrome which was caused by a random split in the cells, which creates an extra copy of the Y Chromosome (XYY).
Only males are born with XYY Syndrome and diagnosis can only be confirmed by a genetic blood test. XYY Syndrome occurs in 1:850 males, but some XYY males often remain undiagnosed.
Mrs Gilkes said the XYY Syndrome Association of Australia Inc. focus is providing the community with a positive understanding of XYY Syndrome and give support to XYY males, their families and carers.
“As a parent of a child with XYY Syndrome, I understand all too well the need for support, understanding and community education on this important condition.
It’s been a four-year journey to establish the association, raising the awareness of XYY within the broader community and at a state and federal government level,” said Mrs Gilkes.
In line with the Associations objectives, late last year, Amber Gilkes presented at The Western Australian Association of Teacher Assistants Inc. (WAATA) Conference and attended the Focus Foundation’s Conference in Brisbane as a representative of XYY Syndrome Association of Australia Inc.
