Charge Syndrome Association of Australasia | Community

Charge Syndrome Association of Australasia

Phone: +61 480 121 345

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24.01.2022 Thank you so much for joining the NSW CHARGE chat and for sharing your stories. 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 t...he next face to face meet up! Photo: grid of smiling faces on our zoom call

22.01.2022 We had a wonderful chat with some of our Kiwi families today on Zoom. Thanks so much for joining, it was lovely to see your faces. 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!

22.01.2022 Fantastic! Wish there was one of these in every city!

21.01.2022 Today is International Day of Sign Languages. Auslan is a uniquely Australian language used by approximately 30,000 people. The kiwis have their own sign language - New Zealand Sign Language, used by 20,000 people. Here are some tools to learn the languages: Free Auslan tutor app: https://apps.apple.com//app/ridbc-auslan-tutor/id307217026... New Zealand Sign Language dictionary: https://www.nzsl.nz/

21.01.2022 Our friends at Genetic Alliance are inviting people to complete their survey about their experiences during COVID-19. They will use summarised information to provide targeted education, advocacy, support and services. It takes 10 minutes. https://www.surveymonkey.com/r/8DLFP8H

20.01.2022 Invite your support team (teachers, therapists, medical) to complete the FREE Understanding CHARGE Syndrome online course. The course is open to anyone and is totally flexible for you to complete in your own time. https://www.chargesyndrome.org.au/onlinecourse... Image: a quote from a course participant

20.01.2022 A reminder about our free webinar for young adults and parents. Learn about strategies and support for becoming independent. Friday 22 May, 11am - 1pm AEST. Visit our website to register.... https://www.chargesyndrome.org.au/becoming-independent [Image description: Young people with CHARGE syndrome, on an excursion in Melbourne, 2018.]

19.01.2022 Thank you for making our first webinar: Becoming Independent, a success! We had 30 participants in the session today including parents, professionals, and people with CHARGE Syndrome. Thank you Meredith Prain for facilitating and Linni Oliver (Senses), Emily McDonald (Senses) and Sarah Dalton for your wonderful presentations. We are already planning another webinar for August/September. We will keep you updated.

19.01.2022 Calling all Queenslanders! Join us for a video call meet up. We'd love to see you and a great chance to catch up with other families and meet new ones Sunday 15th Nov, at 1pm AEST.... Register here: https://www.chargesyndrome.org.au/charge-chats

19.01.2022 Did you miss the Becoming Independent Webinar? The full transcript is available on our website, as well as the list of resources and service providers that were mentioned. (There was a glitch with the recording, so no video or audio this time sorry)... https://www.chargesyndrome.org.au/becoming-independent [Image description: Young people with CHARGE syndrome, on an excursion in Melbourne, 2018.]

18.01.2022 Today our CHARGE community will take a Day to Remember to honour those individuals with CHARGE who have passed away. We ask that you perform an act of kindness to show our love and solidarity as a community. - Calling a senior family member or neighbour who is alone - Sending a virtual gift card to someone in need of food and supplies... - Buying someone a coffee. - More ideas here: https://www.randomactsofkindness.org/kindness-ideas Please share with us photos of your loved one to remember, or of your act of kindness. Image: A day to remember, September 21, 2020. Dove with love heart and CHARGE Foundation logo

18.01.2022 Don't forget Kiwi's, your CHARGE chat is this Sunday! We would love to see you, on video and have a chat. Details to register for NZ, and other states, are on our website. https://www.chargesyndrome.org.au/charge-chats Image: A laptop on a table with a cup of coffee. The laptop screen shows a grid of faces on a video call.

17.01.2022 CHARGE Chats For people in WA, SA or NT, don't forget the video meet-up is THIS Sunday. We can't wait! For other States and New Zealand, dates have been set! Dates and times and how to register are up on our website: https://www.chargesyndrome.org.au/charge-chats... Image: A laptop on a table with a cup of coffee. The laptop screen shows a grid of faces on a video call.

16.01.2022 CHARGE CHATS Attention folks in WA, SA and NT. Join us for video meet up to meet new families or catch up with people you haven't seen in a while. It's informal, its free and all you need is an internet device and a cuppa. Sunday 30 August at 1pm Perth time (2.30pm SA and NT time).... The video call will be hosted by Emily McDonald (our WA rep), Madelene Rich (CSAA President) and Rob Last (everyone knows who he is) Register here and we will send you the zoom details the day before. https://us02web.zoom.us//tZcqcumtqjkpGdzH4rrU_u0VdOme6Gy9- CHARGE Chats in other regions coming soon!

11.01.2022 One of the many groups of unsung heroes ... the Auslan interpreters. What a great story!

10.01.2022 Grab a cuppa for a little read of our Winter Newsletter http://mailchi.mp/bbb1b/csaa-winter2020-newsletter-12477246

07.01.2022 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. New Zealand, you are next! 13 September. Details to register for NZ, and other states, are on our website. https://www.chargesyndrome.org.au/charge-chats... Image: A grid of faces from the CHARGE chat video call for WA, SA, NT.

06.01.2022 This week we came across this Melbourne service dedicated to deaf people - they offer counselling, yoga and bushwalking in Auslan! https://karlihealthcentre.com.au/services/ Do you know of any services tailored for people with vision or hearing impairment? We'd love to hear about them.

05.01.2022 A BIG thank you to the very skilled interpreters, Sarah Field and Mac Gordon, on our zoom webinar last Friday. They did such a superb job IMAGES: Sara interpreting for Linni Oliver, Mac interpreting for Emily McDonald.

04.01.2022 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 learni...ng to drive. We also talked about setting up a virtual group for adults with CHARGE syndrome for social connection. Some of the resources we mentioned were: Dr Kim Blake's CHARGE Syndrome Checklist of health supervision across the lifespan (https://www.drkimblake.com/study/charge-syndrome-check-list/) Understanding CHARGE Syndrome free online course for families, individuals and professionals (https://understandingchargesyndrome.org/) RIDBC Auslan app (https://ridbc.org.au//hearing-resources/ridbc-auslan-tutor/) 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. Pictured: 1st Row: Liz Levesque; Madelene, Sean and Brian Rich; Rob Last; Kylie Moore. 2nd Row: David and Debby Sedgwick; Kathy Bodycoat (also Andrew and Will) Christine and Trent Bridle; Kevin Xu; 3rd Row (Nellie (interpreter); Belinda Arnell (and mum Yvonne); Camilla Kruse; Emma Sutcliffe and Elisa (and Adric); 4th Row: Raph and Annie Bartlett; Alison McKerlie (SA); Yanto, Ichen and Matthew (Indonesia). And a cheeky hello from Buddy, Belinda's gorgeous golden retriever.

04.01.2022 FREE WEBINAR THIS FRIDAY - STILL TIME TO REGISTER Learn about strategies and support for becoming independent. Friday 22 May, 11am - 1pm AEST.... Visit our website to register. https://www.chargesyndrome.org.au/becoming-independent [Image description: Young people with CHARGE syndrome, on an excursion in Melbourne, 2018.]

02.01.2022 A lovely story featuring 18 year old Lewis in the UK. He lights you up! https://www.facebook.com/watch/

02.01.2022 Welcome Emily, to the CHARGE Syndrome Association of Australasia. Emily will represent the needs of our community in WA and NT (and currently SA). She is an Occupational Therapist and Deafblind Consultant at Senses Australia. We are excited to have an allied health practitioner on the board. Looking for a contact in your area of Australia or New Zealand? Find your local person on our website - we would love to hear from you! https://www.chargesyndrome.org.au/aboutus... Image: Close up of Emily, smiling