Wednesday, 16 October 2024

Syndromes Without A Name

Brad BATTIN (Berwick) (09:58): Syndromes Without A Name, or SWAN, is a service that provides information, support, connections and advocacy for families who care for a child with an undiagnosed or rare genetic condition. SWAN want to raise awareness about the work they do and the impact on families. Heather Renton, who founded SWAN in 2012, was inspired by her daughter, who had the neurodevelopmental disorder FOXP1 syndrome. Heather was taught by her parents not to whinge but to do something about it and to make things better, and that was where SWAN started. Today we have Maya with us from the SWAN board, who is working with Steve as the chair, Ant, Craig, Jess, Chris, Darren, Paul and many SWAN families that are making a massive difference in ensuring the message gets out there. I would also like to thank Sam Dennison, who is the council candidate for Akoonah, who has been working with SWAN as well to support them to get that message out. To Maya, we hope that this assists in getting your message out and that people look up SWAN and offer their assistance or what they can do to help. A recent fundraiser was the beginning of that down in Beaconsfield at DoppioZero restaurant, where they invited people from the community to come along. It is not just about the funds raised; it is about the information that gets out there so people are aware of the impacts of having a child or raising a child that has an undiagnosed disorder. To Maya and your team: thank you so much for what you have done in our community. We thoroughly appreciate it, and we look forward to supporting you in the future.