Report from Michelle Stevens:
I attended the Australasian CHARGE Syndrome Conference 2024 in Sydney last week.
I learnt a huge amount about CHARGE Syndrome. The majority of people with CHARGE have hearing and vision loss, ranging from moderate to profound.
It was a great opportunity to connect DBV with other organisations, deafblind people with CHARGE, and their families. I hope some people with CHARGE Syndrome will become members of DBV, and maybe they and their families can participate in our new Peer Support Network project! [Click here to download a summary]
I set up a table at the conference with resources and a poster presentation about how Deafblind people run our own organisation. Many people came up to our table to talk with me, read our poster and take resources and business cards.
Thank you for a great conference! I look forward to more collaboration between DBV and CHARGE Syndrome Australasia in the near future.
Report from Rosalie Kassulke:
Thank you to DBV for allowing me to attend the Australasian CHARGE Syndrome Conference 2024 last weekend.
Good to catch up with Michelle Stevens and Troy at the conference on Friday afternoon.
Meet many participants through conference. Some come from USA, Germany, UK, and Canada. Many parents with their charges Syndrome child(ren) and some adult with charge syndrome. Total 200 registrations come to the conference and dinner.
I really enjoyed listening with three guest speakers on Saturday night – conference dinner for 3 different lived experience with their disabilities such as Sarah Dalton, Nas Campanella from ABC and Stephanie Bagas.
Nas Campanella is the ABC’s National Disability Affairs Reporter. Nas is totally blind and has a neurological condition called Charcot-Marie-Tooth (CMT) which means she can’t read Braille. I never heard from her. Wow about her lived experience journey.
Sarah Dalton is widely known and respected throughout the CHARGE syndrome community for her advocacy work, sporting achievements and acting roles.
Stephanie Bagas is a filmmaker living with CHARGE syndrome. For the past three years, she has been a part of Bus Stop Films, a non-profit organisation that provides training and jobs in the film industry for people with a disability.
Conference topics that I attended on Sunday all day were mediation types to manage stress and anxiety, functional vision assessment (diagnosis – visual issues – make sure that NDIS plan need to add vision issues so can see the specialist eye doctor), research opportunities for housing support accessible provided by M Priam, parents panel Q & A, future plans for something happening if child’s parents or guardian or carer is passed away, siblings panel – first time ever at the conference – very emotional to hear about their experience, and various speakers panels.
Recommendation: DBV should have one full day conference with dinner with 2 lived experience journey DBV members. Topics can be how to improve accessible issues, technologies issues and lived experience/barrier issues.
