Creating positive awareness for XYY SYNDROME
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!
We had our first day selling Christmas Cakes at Lakelands Shopping Centre on 4 November, these cakes have been kindly donated by the Lions Club of Mandurah to help us raise funds to keep our Association running.
We had an amazing raffle a 1.5kg Lions cake decorated by Sandy’s Cakes. Sandy kindly donated and decorated a one-of-a-kind Santa Cake. I have to say it was incredible and the local family that won the raffle couldn’t have been happier to take it home.
This was followed up on 25 November, once again selling cakes donated by the Lions Club of Mandurah.
Once again an Incredible raffle with four 1.5kg Lions Christmas Cakes kindly decorated with a Christmas theme by Sandy’s Cakes
A HUGE Thank You to our local community for their ongoing support to create positive awareness for XYY Syndrome.
I was guest speaker for the Mini Peer group expo for Disabilities week at the Mandurah Performing Arts Centre- with a full room I shared our journey of setting up a not for profit for a rare syndrome- our challenges and success of XYY Syndrome Association of Australia Inc.
Thank you to Mayor Rhys Williams, Inclusive Mandurah- Fiona Allen. The city of Mandurah council and councillors for giving me this opportunity to create awareness for XYY Syndrome and a huge thank you to everyone who came to hear me talk , amazing support from our community!
We would like to say a huge thank you to the Mandurah Lions Club and our local community, your support has been amazing!
Today’s opportunity was due to the generosity of the Lions Club of Mandurah Inc. and Sandy kindly donating her amazing decorating skills and time. The 4 winners were very happy when we delivered their prize to them.
A special thanks to Lakers News for assisting us in drawing the raffle & their amazing ongoing support.
We have a fantastic community!
What a fantastic evening celebrating our years achievements, thank you to everyone for your amazing ongoing support.
Creating positive awareness for XYY Syndrome through better understanding
The Telethon Kids Institute is an Australian medical research institute focused on the prevention of paediatric disease and the development of improved treatments to improve the health and wellbeing of children.
Today we were lucky to be invited for a tour of the Institute and spoke with Prof.Terry Johns Head of the Telethon Kids Institute Cancer Centre since 2017
