More positive awareness for XYY Syndrome – Riverside Education Support Centre WA newsletter, 22nd August 2019
Activity
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.
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
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
JTC Education Support College Disability Expo, Mandurah WA
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
Announcement for XYY Syndrome awareness-WAATA 2018 Conference
The West Australian Association of Teacher Assistants Inc.
CONFERENCE 2018
August 3th, 4th and 5th
Hotel Rendezvous, Scarborough
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.
XYY Syndrome Survey Challenge
For XYY Syndrome males and families:
Do you want to make a difference for XYY Syndrome?
Grab a cuppa and fill out our survey now.
https://www.surveymonkey.com/r/XYY_SYNDROME
Dear XYY males and families,
Please find attached the survey we have created as a way to assist us in gathering important information on XYY Syndrome and how it effects each individual. If you would like to fill out this survey, please answer only relevant questions relating to you and your situation. Please do not use names when completing this survey.
By filling in this survey you are giving consent for XYY Syndrome Association of Australia Inc. to use this information.
The information provided will be used to form the basis of our research and help ensure current information is made available through our website and Facebook support group. By comparing the answers from the surveys, we aim to gather as much information as we can about the differences and similarities relating to the traits, ages, diagnostic procedures, educational needs and supports available for those with XYY Syndrome. We also aim to find the areas that are lacking appropriate funding and support, with the view of using this information to raise awareness where it is needed most.
We sincerely thank you for taking the time to share your information, we understand this survey has asked some very personal questions. The information will be respected and only used for raising awareness and better understanding of XYY Syndrome.
https://www.surveymonkey.com/r/XYY_SYNDROME
Kind regards
Amber Gilkes
Chairperson
XYY Syndrome Association of Australia Inc.
CREATING POSITIVE AWARENESS FOR XYY SYNDROME
DAY 1:
WOW this is going to make a difference for XYY Syndrome.
After only one night of our XYY Syndrome survey being released globally to all the XYY males and families, we had an incredible 23 responses!
And with that I decided to set a challenge for myself to show just how much I care for the future of XYY Syndrome.
I will swim 1 lap at the pool (50m) for every survey returned!
Today 23 laps
Thank you to everyone for your support on this journey
DAY 2: 22nd May 2018 
Wow- 71 responses in 48hrs for our XYY Syndrome survey!
I’m sticking to my commitment,1 lap in the pool for every response, 20 laps in the pool today.
I’ll do 20 laps every second day to keep up with the responses.
Keep responding everyone, together we will make a difference!
DAY 4: 24th May 2018
What an incredible response 85
I’m sticking to my commitment 1 lap in the pool for every response, 45 laps today.
Keep responding everyone, together we will make a difference!
DAY 5: 25th May 2018
What an incredible response 95
I’m sticking to my commitment 1 lap in the pool for every response
Another 7 laps today 95 laps in total achieved
Keep responding everyone, together we will make a difference!
DAY 8: 28th May 2018
WOW- Survey returns hit 108 responses!
I’m sticking to my commitment 1 lap in the 50 meter pool for every response!
Tomorrow I’ll do 13 laps to catch up to the responses
Keep responding everyone, together we are making a difference!
DAY 9: 29th May 2018
115 responses!
20 laps achieved today and I’m sticking to my commitment 1 lap in the 50 meter pool for every response!
Keep responding everyone, together we are making a difference!
DAY 10: 30th May 2018
120 responses!
Day 10- For our XYY Syndrome survey!
5 laps today
I’m sticking to my commitment 1 lap in the 50 meter pool for every response!
Keep responding everyone, together we are making a difference!
DAY 11: 31st May 2018
WOW 127 responses!
7 laps today and I’m sticking to my commitment 1 lap in the 50 meter pool for every response!
Keep responding everyone, together we are making a difference!
DAY 16: 5th June 2018
Half way to closing date!!
Amazing effort everyone 134 responses
Keep responding everyone, together we are making a huge difference for the future of XYY Syndrome and creating positive awareness at the same time.
20 laps, I’m sticking to my commitment 1 lap in the 50 meter pool for every response!
DAY 18: 7th June 2018
Amazing effort everyone 137 responses
Keep responding everyone, together we are making a huge difference for the future of XYY Syndrome and creating positive awareness at the same time.
5 Laps clocked to match the survey responses
I’m sticking to my commitment 1 lap in the 50 meter pool for every response!
DAY 19: 8th June 2018139 responses
Keep responding everyone, together we are making a huge difference for the future of XYY Syndrome and creating positive awareness at the same time.
3 Laps clocked to match the survey responses
I’m sticking to my commitment 1 lap in the 50 meter pool for every response returned!
Standing Tall For XYY Syndrome
Creating positive steps for XYY Syndrome.
XYY SYNDROME MADE THE PAPER!
Today I attended an event “Light Up Lakelands – Local Heroes” as I had been nominated in recognition for my efforts in creating awareness for XYY Syndrome.
It was a wonderful morning, meeting the other nominees, making connections within the local community and raising the profile of XYY Syndrome.
Thank you to everyone for nominating me as a finalist, creating awareness is very important for the future of families, like ours, experiencing life with XYY Syndrome.
Show your support for XYY Syndrome
XYY Syndrome awareness – 25 March 2017
Adam Blackwell
Please show your support
Adam is a part of our support network and standing up for XYY Syndrome by telling his story, which is not an easy thing to do.
Please show your support by donating towards his amazing efforts and creating awareness for XYY Syndrome.
You Can Do it Adam!
We have donated, every donation counts towards making that difference.
Please click here to make your donation
Adam’s Story
Hi, I’m Adam
I have 47 XYY syndrome with is a genetics disorder. It affects 1 in 1000 male births. Problems it may cause is learning disabilities, low muscle tone, delayed motor skills including coordination, balance etc. Many boys suffer from emotional or behavioural issues.
What i would like to do is help this charity to make a small profit from my fundraiser and hopefully make people more aware of the syndrome and how it affects different individuals.
If you would like any more information about the syndrome then please feel free to ask me or alternatively if you would like to read about it unique have an area about 47 XYY syndrome.
Please donate any money at all to this charity they help to provide information to families and people that suffer from all sorts of different genetics disorders.
You want just be helping me, you will be helping anyone that has a genetics disorder. Please share this post to help raise awareness.