Creating more positive awareness for XYY Syndrome

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.

Western Australian Charity Launch

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.

XYY Syndrome WA Charity launch 2019
XYY Syndrome WA Charity Launch Mandurah Mail local newspaper
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019

Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019
Western Australia Charity Launch for XYY Syndrome 2019

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

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.

Focus Foundation Conference 2019 in Brisbane

XYY Syndrome
XYY Syndrome Association of Australia Inc.
Global representatives:
Focus Foundation-USA
XYY Syndrome Association of Australia Inc.
Klinefelter Syndrome Australia Inc.
Australian X and Y Spectrum Support

The Focus Foundation came to Australia from the USA to give those diagnosed with X and Y variations that extra support and help create better understand around their diagnosis.

This conference featured their team of X and Y Chromosome Specialists in Neurodevelopment, Neurogenetics, Endocrinology, PT, Immunology, Executive Functioning, Oral Motor and Speech and Language.

On day 1, we had the opportunity to spend a full day with these amazing specialists at the family clinic and Day 2 was the full day conference.

This conference was very informative.

XYY Syndrome Association of Australia Inc. would support their return for another conference.

Below are a few slides from the conference relating to XYY Syndrome.