Creating positive awareness for XYY SYNDROME
Patrick Twells
For the best photo taken of the Mandurah Bridge lit up in our charity colours Yellow and Green on the night of the 13th of July 2023.
It was great to see the community getting involved to support of cause for XYY Syndrome.
The winner has received a family cruise with Mandurah Cruises
Wikipedia XYY 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-
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.
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.
On behalf of XYY Syndrome Australia Association of Australia Inc. we would like to extend our heartfelt thank you for your contribution towards your contribution to our vision and mission. Your support means a lot to us, and with your help, we can make a significant impact on the lives of those we serve.
Thanks to your generosity, we were able to fund critical goals (Camp 2023, Operational costs, awareness campaigns, brochures to distribute to healthcare and education institutions)
It is inspiring to see businesses, like yours, take an active role in giving back to the community. Your dedication sets an excellent example for others to follow. Your involvement not only strengthens our community but also encourages others to join hands in creating a positive and lasting impact.
We have been able to provide much needed awareness to those who may not have had the opportunity to hear about us. Your generosity has truly made a difference, and we are incredibly grateful for your support.
Please accept our deepest appreciation for your sponsorship. To show our gratitude we would be honoured to recognise your contribution through our various communication channels, including social media, our website, and event promotions. If you have any specific preferences or requirements regarding the acknowledgment of your support, please let us know, and we will ensure it is carried out accordingly.
Once again, we extend our heartfelt gratitude to you and your entire team for your kindness and generosity. We truly value our partnership and look forward to continuing our collaboration to bring about positive change in the lives of those who need it most.
We could not have done it without you. Thank you once again for being an invaluable sponsor.
With warmest regards,