Events

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.

International Day of People with Disability 2022.

During the week I had the awesome opportunity to share our story as an XYY family and connect with the community by talking on a podcast with ConnectGroups Support Groups Association WA Inc.

I spoke from my heart and shared our story.

Interested in listening?

Tune in here

What a fantastic day networking in our local community at the Day of People with Disabilities!

Another amazing moment for the XYY Awareness!

On this night, 21st October, Kylie Clark-Parry stepped in to represent our association, the XYY Syndrome Association of Australia Inc.

This was her response to the big moment!

“PROOF OF LIFE: Mummy’s big night out!”

When Tobias was born I could not have imagined in my wildest dreams that the journey of parenting him would have taken the path it has.

It is challenging, exhausting, hard, hilarious, scary, fun filled, adventurous and so much more. It has expanded my patience, my knowledge and my heart.

However, best of all it has brought me into a community of people. I am privileged to now do life with XYY Syndrome Association of Australia Inc.

They are more than my coaches and supporters; they are friends who have become family.

So last night it was my greatest honor to represent them at the WA Community Achievement Awards in recognition for all the amazing work we do as an association in supporting our boys and their families.

These are the moments that remind me of how far we have come and the privilege we have parents to journey together.

Another proud moment!

While attending a dinner at the Lions Club of Mandurah, our Club branch for XYY was presented with this very special badge from the District Governor, Peter Kennedy.

It was great to be joined by our XYY committee!