CHARGE Chats

For people in New Zealand

Thank you to those who joined the CHARGE chat for New Zealand. It was lovely to put faces to names. We discussed share homes, support workers, funding, and finding healthcare professionals who understand CHARGE syndrome. And of course footy!

We had cameo appearances from Aimee, Elijah, Josh, Jaecob, Sean, Lillian & Conan which was a joy!

For people in WA, SA and NT

Thank you to those who joined the CHARGE chat for WA, SA, NT. Lovely to put faces to names. We covered topics including NDIS, Deaf blind consultants and schooling. For those who missed us, we will do it again.

For people in Victoria and Tasmania

Thanks to those who joined our CHARGE Champions Belinda Arnell and Kylie Moore this afternoon for our VIC/TAS CHARGE Chat. It was great seeing so many of our families today and hearing how life is going. Some of our topics included: managing stress and behaviour during lockdown; testosterone treatments in CHARGE syndrome; recommendations for behavioural specialists in Melbourne with experience in CHARGE syndrome.

It was great to hear that Trent, David and Kevin are all learning to drive. We also talked about setting up a virtual group for adults with CHARGE syndrome for social connection.

Special mention to Alison McKerlie who celebrated her birthday today - happy birthday Alison! And a warm welcome to Yanto, Ichen and Matthew who joined us later from Jakarta, Indonesia.

For people in NSW

Thank you so much for joining the call and for sharing your story. We have a lot to learn from each other. Some of our topics included our ENT experiences and cochlear, school experiences, birth stories as well as activities that adults with CHARGE syndrome are involved in. We agreed that we needed to share a list of health professionals who are knowledgeable with CHARGE Syndrome, starting with Dr Catherine Birman (ENT). Indeed we are all looking forward to the next face to face meet up!

For people in QLD

It was fantastic catching up with some of our Queensland community! Thank you so much for taking time to join and for sharing with us.

We talked about the NDIS; home schooling; the impact of COVID-19 on goals; and the special challenges that our siblings face.

Kerri Weaver (based on North Brisbane) is a specialist teacher in vision impairment and orientation and mobility. She has worked with a number of families of children with CHARGE syndrome and can also provide assistance with NDIS plans for Australian families (this service may incur a small fee).