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

1pm

Registration opens

3 to 5pm

For anyone arriving earlier on Friday, come and say hi to your tribe.

5:30pm

Meet & greet

6 to 9pm

Three course dinner

7 to 9pm

Facilitated 'Meet and Greet' for siblings (facilitated)

Facilitated 'Meet and Greet' for Adults with CHARGE syndrome (facilitated)

Saturday 24 August 2024

Plenary program and exhibitors

8:30am

Welcome

8:40am

Setting the scene: facilitated discussion about participants top priorities, goals for the conference.

9:15am

Keynote: CHARGE syndrome update (current health research on GI issues, POTs, vagal nerve) by
Dr Kim Blake

Morning tea

Adults with CHARGE Syndrome: Closed group with Kasee Stratton-Gadke (10:30 am to 5 pm).
Go to Adults group details

Streams sessions 10:30 am to 12:30 pm

Early years stream

Behaviour Phenotype - Tim Harsthorne
By better understanding the unique features of CHARGE syndrome and its interactions we may gain a better understanding of related behaviors.

Early communication - Rob Last, Claudia Junghans (parent)
How to develop and encourage early communication using a total communication approach.

Vision and behaviour - David Brown
Vestibular and proprioception, vision issues - overview for new parents. Understand the issues, how they impact behaviour and development and effective strategies

Practical strategies for better communication and working with your team - Steve Rose
Working in partnership with schools and the wider team to support, encourage and develop a child’s communication so everyone is working towards the same goal.

Middle years stream

Healthcare in Adolescence - Q&A with Dr Kim Blake

Mental health and wellbeing - Nathan MacArthur (counsellor)
This session will connect carers through their shared lived experiences of supporting an adolescent with complex care needs, and provide information around 'what helps' such as supports, strategies and self care.

Planning for the future stream

My home, my way - speaker TBD
Information and resources to support the future living goals of a person, no matter what their needs, to live a life of their choosing.

Building community networks - speaker TBD
Circles of support, valued roles and connecting to community.

Future Housing Research Project - Meredith Prain
Research project to develop education resources to support people with complex care needs and their families to work towards independent living arrangements of their choice.

Transitioning, advocacy, strategies for success - Tim Hartshorne, a parent (tbd)
Lived experiences and panel discussion on transition

Lunch

Stream sessions 1:30 pm to 3 pm

Early years stream

Mental health and wellbeing - Nathan MacArthur (counsellor)
This session will connect carers through their shared lived experiences of supporting an adolescent with complex care needs, and provide information around 'what helps' such as supports, strategies and self care.

Middle years stream 

Communication in adolescence - David Brown and Claudia Junghans (Parent)

Building community networks beyond school
Creating socially inclusive pathways and valued social roles

Life beyond school
Panel with David Brown, Claudia Junghans (Parent)

Planning for the future stream

Guardianship, Wills, Trusts - Marea Howe
Information and resources on putting future structures and supports in place, such as guardianships, administrator, power of attorney, making a will.

Supported decision making - speaker tbd
Supported decision-making offers people with disability a broad range of supports to be able to make their own decisions and stay in control of their lives. 

Healthcare in adulthood
Q&A with Dr Kim Blake

Afternoon Tea

Stream sessions

Early years stream

Schooling options - parent stories
Parents share their experiences of four types of schooling: homeschool, mainstream, Montessori and special school, followed by panel discussion facilitated by Rob Last

Healthcare in childhood
Q&A with Dr Kim Blake

Middle years stream

Quality of life for adolescents - Tim Hartshorne

Supporting adolescent mental health - Kasee Stratton-Gadke

Planning for the future stream

Mental health and wellbeing - Nathan MacArthur (counsellor)
This session will connect carers through their shared lived experiences of supporting an adolescent with complex care needs, and provide information around 'what helps' such as supports, strategies and self care.

Evening program 6:30pm

Celebration dinner - 3 course banquet

 

Sunday 25 August 2024

Morning tea

Adults with CHARGE Syndrome: Closed group with Kasee Stratton-Gadke (10am to 12 noon).
Go to Adults group details

Plenary program 10:30am to 12 noon

10:30am to 12 noon

Future planning, it's never too early to start - Marea Howe (parent)
Thinking about future planning and supports (guardianship, making a will)

Circles of support and microboards
Planning support networks for the future.

Working in partnership panel - Tim Hartshorne, Steve Rose, Parent
Working with your team to support quality of life outcomes at every life stage.

Lunch

1pm to 3:30pm

Sibling panel - sibling experiences and perspectives

Adults with CHARGE syndrome panel - insights and perspectives

Speakers panel - open discussion, final questions

Closing remarks

Afternoon tea

End of conference

 

Topics, speakers and timings are to be finalised and are subject to change.

Go to alternative programs >