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
For the best photo taken of the bridges/landmarks around Perth and Mandurah celebrating the national charity launch will WIN a family pass from Mandurah Cruises as judged by the XYY Executive Committee *
Mandurah Bridge will be lighting up in green and yellow on Thursday, July 13th to support awareness of XYY Syndrome!
Send your photo to xyycompetition@gmail.com
The bridge will shine brightly from sunset to sunrise to acknowledge the official approval of the ‘XYY Syndrome Association of Australia’ as a Health Promotional Charity that started right here in Mandurah.
Snap a photo of the bridge shining bright for your chance to win a family pass for Mandurah Cruises!
The best photo sent in to the XYY Syndrome Association will win!
If you’re heading out of Mandurah, the Matagarup Bridge, Mount Street Bridge, Sky Ribbon, Joondalup Drive Bridge, and the Northbridge Tunnel will also be lit up.
XYY Syndrome is a genetic condition that occurs in about 1:850 males and often remains undiagnosed. The condition is caused by a random split in the cells, which creates an extra copy of the Y Chromosome (XYY).
There is a significant amount of research that still needs to be conducted in order for this condition to be understood and adequately supported, ensuring all XYY boys and men have an equal opportunity to live fulfilled lives.
* The XYY Syndrome Association of Australia Inc. Executive Committee
Thursday 13th July Sunset to Sunrise the Mandurah Estuary Bridge will be lit up Green and Yellow for our National Charity Launch.
After a lovely evening at the Lions Club of Mandurah Changeover dinner, I had the opportunity to chat with Daniel Wilkins from the City of Mandurah and we spoke about the importance of supporting our community and the future plans for our association.
Launch night!!!
Supporting genetic conditions, we are a stronger voice together!
Thank you Lisa Munday! for attending this amazing event last night, we appreciate you and your support to create positive awareness for XYY Syndrome Association of Australia Inc.
CANNING BRIDGE COMMUNITY SPACE
63 Kishorn Road, Mount Pleasant, WA 6153
ConnectGroups Support Groups Association WA Inc.
A Huge Milestone!
Today, 5 years ago marked a very special day, a milestone of reflection and celebration.
Back in 2016 it all began as an idea: a blog to find support for our son, our family and connect with other XYY families and find more XYY guys.
With the support of our family and friends, my husband and I decided to create a platform to better understand XYY Syndrome, after our son was diagnosed and we found no support.
In 2018, the association was formed.
This day will always remind me of why we started this journey, with the association, and why we continue to create a more positive future for XYY Syndrome.
It is one thing to never give up on a goal but it’s another to live within it, and our XYY journey has shown many challenges.
This journey has been driven by my passion to help our son, to learn, understand and share lived experiences around this often misunderstood genetic condition.
Through better understanding we can make a difference and support those who need the extra help!
Together we will continue to make a difference and I thank our amazing team and everyone within the community for all your ongoing support to help make the XYY community feel heard.
Amber Gilkes
Chairperson
“Connecting with our community”
On this day, three of our XYY families here in WA were invited to join in a photo shoot with our XYY boys!
The aim of this shoot is to raise awareness for rare, genetic, and undiagnosed conditions.
With ConnectGroups leading this project, our team at the XYY Syndrome Association of Australia Inc have joined them in working together with other support groups and local organisations, like ourselves, to make a difference in our community.
This amazing exhibit aims to help those diagnosed with rare, genetic, and undiagnosed conditions, not only to be seen but also to be heard. It is time for us to stand together!
During this shoot we shared our stories and lived experiences with XYY Syndrome. We are so excited about this opportunity and would love to see you at the exhibit!
Thank you for your continued love and support from the XYY Team!
The Exhibit details and flyer are attached.
