Conference program
The program is close to being finalised. Speakers and presentation titles will be confirmed soon.
There will be THREE concurrent streams tailored for specific life stages, however, participants are welcome to attend presentations in any stream.
Early years - for parents with younger children
Middle years - for parents with adolescent children
Future planning - for parents with adult children
Adults with CHARGE Syndrome will have their own separate program facilitated by Dr Kasee Stratton-Gadke. More about the adults program.
Friday 23 August 2024 |
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1pm |
Registration opens |
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3 to 5pm |
For anyone arriving earlier on Friday, come and say hi to your tribe. |
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5:30pm |
Meet & greet |
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6 to 9pm |
Three course dinner |
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7 to 9pm |
Facilitated 'Meet and Greet' for siblings (facilitated) Facilitated 'Meet and Greet' for Adults with CHARGE syndrome (facilitated) |
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Saturday 24 August 2024 |
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Plenary program and exhibitors |
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8:30am |
Welcome |
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8:40am |
Setting the scene: facilitated discussion about participants top priorities, goals for the conference. |
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9:15am |
Keynote: CHARGE syndrome update (current health research on GI issues, POTs, vagal nerve) by |
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Morning tea |
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Adults with CHARGE Syndrome: Closed group with Kasee Stratton-Gadke (10:30 am to 5 pm). |
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Streams sessions 10:30 am to 12:30 pm |
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Early years stream Early communication - Rob Last, Claudia Junghans (parent) Vision and behaviour - David Brown Practical strategies for better communication and working with your team - Steve Rose |
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Middle years stream Mental health and wellbeing - Nathan MacArthur (counsellor) |
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Planning for the future stream Building community networks - speaker TBD Future Housing Research Project - Meredith Prain Transitioning, advocacy, strategies for success - Tim Hartshorne, a parent (tbd) |
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Lunch |
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Stream sessions 1:30 pm to 3 pm |
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Early years stream Mental health and wellbeing - Nathan MacArthur (counsellor) |
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Middle years stream Building community networks beyond school Life beyond school |
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Planning for the future stream Supported decision making - speaker tbd Healthcare in adulthood |
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Afternoon Tea |
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Stream sessions |
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Early years stream Healthcare in childhood |
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Middle years stream Quality of life for adolescents - Tim Hartshorne Supporting adolescent mental health - Kasee Stratton-Gadke |
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Planning for the future stream Mental health and wellbeing - Nathan MacArthur (counsellor) |
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Evening program 6:30pm |
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Celebration dinner - 3 course banquet
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Sunday 25 August 2024 |
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Morning tea |
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Adults with CHARGE Syndrome: Closed group with Kasee Stratton-Gadke (10am to 12 noon). |
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Plenary program 10:30am to 12 noon |
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10:30am to 12 noon |
Future planning, it's never too early to start - Marea Howe (parent) Circles of support and microboards Working in partnership panel - Tim Hartshorne, Steve Rose, Parent |
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Lunch |
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1pm to 3:30pm |
Sibling panel - sibling experiences and perspectives Adults with CHARGE syndrome panel - insights and perspectives Closing remarks |
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Afternoon tea |
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End of conference |
Topics, speakers and timings are to be finalised and are subject to change.