XYY Syndrome | XYY Syndrome Association of Australia Inc.

What is XYY Syndrome

Amber XYY Syndrome 18 January, 202320 March, 2024XYY Syndrome

Unique– Understanding Chromosome Disorders

http://www.rarechromo.org/information/Chromosome_Y/XYY%20FTNW.pdf

Kids Health – XYY syndrome is a genetic condition found in males only.

XYY Syndrome is a genetic condition caused by a random split in the cells at conception, creating an extra copy of the Y Chromosome (XYY). XYY boys are often taller than average and may suffer from hypotonia (weak muscle tone). They may also have delayed speech development and some learning difficulties, particularly those related to executive function. Many boys display poor impulse control, particularly in the younger and teenage years, and find it hard to both emotionally regulate and process sensory inputs. These struggles in their earlier years have a significant impact on their social development, making it difficult for them to form meaningful and lasting friendships or relationships. This leads to further isolation and deterioration in self-worth.

There is a requirement for the recognition of XYY Syndrome as its own stand-alone diagnosis, requiring specific XYY-related specialist support. This recognition will allow the early intervention of supports and therapies to ensure all XYY boys and men have the opportunity to live fulfilled lives.

Source: http://www.healthline.com/health/xyy-syndrome#Overview1

Article resources from Health Line-

47, XYY syndrome. (2013, May 20). Genetics Home Reference, U.S. National Library of Medicine. Retrieved May 18, 2013 from htttp://ghr.nlm.nih.gov/condition/47xyy-syndrome#diagnosis

Cytogenetics (Chromosome Analysis). (2010, Nov 10). American Association for Clinical Chemistry. Retrieved May 18, 2013 from http://labtestsonline.org/understanding/features/genetics/start/7

Double Y syndrome. (n.d.). National Center for Biotechnology Information, U.S. National Library of Medicine. Retrieved May 18, 2013 from http://www.ncbi.nlm.nih.gov/gtr/conditions/C3266843/

SHBG. (2010, Feb 7). American Association for Clinical Chemistry. Retrieved May 18, 2013 from http://labtestsonline.org/understanding/analytes/shbg/tab/test

Creating more positive awareness for XYY Syndrome

Amber Events, XYY Awareness, XYY Syndrome 1 July, 202027 March, 202447XYY, xyy australia, xyy community, XYY Syndrome, xyy syndrome association

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.

2 Years Mark!

Amber Events, XYY Awareness, XYY Syndrome 13 February, 202027 March, 202447 XYY Syndrome, 47XYY, 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.

Fantastic Australia Day Out!

Amber Events, XYY Awareness, XYY Syndrome 26 January, 202027 March, 2024

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.

Western Australian Charity Launch

Amber Activity, Events, XYY Awareness, XYY Syndrome 6 August, 201912 September, 202247XYY, XYY, xyy australia, xyy awareness, xyy boys, xyy charity, xyy community, xyy males, xyy men, xyy support, XYY Syndrome, xyy syndrome association, XYY Syndrome awareness, xyy syndrome charity, xyy syndrome wa charity, xyy wa charity

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.

Local businesses that contributed to our launch Download

Local businesses support Download

XYY Syndrome WA Charity Launch Mandurah Mail local newspaper

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

Amber Activity, Events, XYY Syndrome 5 July, 201912 September, 202247 XYY Syndrome, 47XYY, XYY, xyy association, xyy australia, xyy awareness, xyy support, XYY Syndrome, xyy syndrome association, XYY Syndrome awareness

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

Amber Activity, Events, XYY Awareness, XYY Syndrome 16 April, 201912 September, 202247 XYY Syndrome, 47XYY, XYY, xyy australia, xyy awareness, xyy boys, xyy community, xyy males, xyy men, xyy research, XYY Syndrome, xyy syndrome association

**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.

Creating awareness for XYY Syndrome and networking with our Western Australia community

Amber Activity, XYY Awareness, XYY Syndrome 1 January, 201912 September, 2022XYY Syndrome

28th June 2019
JTC Education Support College Disability Expo, Mandurah WA

18th April 2019
Not even 24 hours home from representing the XYY community at the Focus Foundation conference in Brisbane.

Anne-marie McArdle (our Deputy) and I are out networking with Andrew Hastie Federal Member for Canning -Liberal party and Josh Frydenberg Treasurer of Australia.

What a great way to end this week, its good to be home and representing the future for XYY Syndrome.

WAATA Conference 2018

Amber Activity, Events, XYY Awareness, XYY Syndrome 25 September, 201812 September, 202247 XYY Syndrome, 47XYY, xyy awareness, xyy support, XYY Syndrome, XYY Syndrome WAATA conference

What a great day Kerry and I had creating positive awareness for XYY Syndrome at the WAATA 2018 conference.

Conference newsletter 2018(view page 20 for XYY Syndrome write up)Download

WAATA-_XYY-Syndrome-Association-of-Australia-Inc.-2018-Certifiate-of-Appreciation Download

Announcement for XYY Syndrome awareness-WAATA 2018 Conference

Amber Activity, Events, XYY Awareness, XYY Syndrome 10 June, 201812 September, 202247 XYY Syndrome, 47XYY, XYY, XYY Syndrome WAATA conference

The West Australian Association of Teacher Assistants Inc.

CONFERENCE 2018

August 3th, 4th and 5th
Hotel Rendezvous, Scarborough

WAATA 2018 Conference program

WAATA 2018 Conference

Announcement for XYY Syndrome awareness, Amber Gilkes guest speaker.

Amber Gilkes Chairperson of XYY Syndrome Association of Australia Inc.

1: (b) What is XYY Syndrome and how can you help as an Educator
• What is XYY Syndrome
• How XYY Syndrome is diagnosed
• Associated traits
• Sharing helpful tools and resources from specialists and teachers that have worked with her son and other
XYY students.
• Sharing the experience with living and caring for a child with XYY Syndrome as well as strategies utilised at
school to engage and get the best out of the students.
• Emphasise the importance of communication between the teacher, EA, and parent in relation to the needs
of each individual child.

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The West Australian Association of Teacher Assistants Inc.

CONFERENCE 2018

August 3th, 4th and 5th Hotel Rendezvous, Scarborough

August 3th, 4th and 5th
Hotel Rendezvous, Scarborough