CHARGE Syndrome Pre-Conference

    

 

 

 

Together we can do great things: professionals and families working together 

 

Stories from our Australasian CHARGE Syndrome Community

 VIEW PROGRAM HERE

Amazing presenters each sharing their experience of supporting someone with CHARGE syndrome. Topics include therapy, communication, behaviour support, schooling, transitioning into adulthood, and independence. These presentations are about the social model of disability which recognises that with the right support, a person with disability can live the life they choose.

 

Wednesday 29th June, 2022

Registration

There are two registration options. You can register to attend just the CHARGE Pre-Conference Session or in addition to a full conference registration. Please note the CHARGE Pre-Conference Session at our Melbourne Hub has now been cancelled. Delegates are welcome to purchase a virtual registration in lieu of a Melbourne Hub ticket.

 

Option 1: In person - Perth

Time: 9am – 3pm (AWST)

Location: Esplanade Hotel Fremantle by Rydges, Western Australia

Cost (including morning tea and lunch):

 

 

Register Now - Perth In-Person

 

Option 2: Online

The CHARGE Pre-conference will also be live streamed for those unable to attend in person in Perth. The presentations will be recorded and you can watch them in your own time.

Time: 10:30am – 4:30pm (ACST), 11am – 5pm (AEST), 1pm – 7pm (NZST)

Location: Online

Cost: $35

 

Register Now - Online Registration

 

CHARGE SYNDROME PRE-CONFERENCE PROGRAM
 

Kaya Lyons - Sensory integrative occupational therapist

Title: Integrating therapy in all aspects of life

When supporting each child and family therapeutically it's vital that a whole lens approach is taken. Therapy needs to be integrated into life with a key focus of empowering each child and family member to understand and navigate their own health journey with support. 

 

Carmen Roche - Speech Pathologist

Title: Speech Pathology and the Social Model of Disability

A speech pathologist’s perspective on how moving toward the Social Model of Disability can help improve client outcomes in a genuine way. Case examples of how this change of practice looks within a caseload, which includes supporting individuals with CHARGE syndrome.

 

Ann Greer - Support Coordinator, Positive Support Clinician

Title: A strengths-based approach to challenging behaviour and its messages

A respectful and proactive perspective on what people with severe communication impairment are trying to tell us when they are forced to behaviourally ‘shout’ to get their needs met. It will discuss life situations that many people with challenging behaviour find themselves in throughout their lives. 

 

Phil Herborn - Parent

Title: Physical therapy meets real life - a dad's perspective

Physical therapy: what's worked and what hasn't over the past 13 years of being a parent of a child with CHARGE syndrome. Sharing how we work with therapists, using purposeful activities to sneak physio into day to day life and how to keep it fun.

 

Annette Stocker - Parent, NZ Director

Title: Schooling and Implementation of Specialist Support

Annette’s daughter Aimee was born in 2003, marking the start of their journey into the world of multi-sensory impairment. Aimee is enrolled in a deaf school and has the support of a resource teacher for vision in the mainstream school classes. This person has been instrumental in educating the class teachers about multi-sensory impaired children and ensuring specialist teaching reports are implemented and followed through. 

 

Debbie Bell - Physiotherapist

Title: Physiotherapy Approaches for children with CHARGE syndrome

Physiotherapy treatment for children with CHARGE syndrome requires a different approach to that of other conditions in order to address the multisensory nature of the syndrome. Traditional physiotherapy approaches often fail children with CHARGE syndrome; it needs to be combined with sensory regulation techniques, with physiotherapists being guided by parents and other members of the support team, such as Occupational Therapists and Speech Therapists, to ensure a multi-disciplinary approach to the therapy.

 

Dianne Mandeville - Parent, Senior Consultant in Succession Planning

Title: One family’s journey towards a ‘typical’ life in community

Dianne’s son Robbie was born in 1986 and in this presentation she will give a brief overview of the early confronting years of confusion, learning, adjusting and adapting and how they formed a vision and plan of how a good life could be developed for Robbie, given the challenges that CHARGE syndrome presented for him. Dianne wants to give hope, and some tools, to parents who are at different stages of their ‘CHARGE’ journey and share some insights that have had a profound effect on Robbie’s life, and their life, as a family.

 

Stephanie Begas

Title: Navigating Life

Steph is a 20 year old aspiring filmmaker from Sydney. Her CHARGE Syndrome diagnosis has never slowed her down, achieving her HSC certificate as well as completing two TAFE courses. Join her as she discusses themes such as mental health, friendships and navigating adult life as an adult with CHARGE.

 

 

This program has been created by Emily Truswell and Madelene Rich.

For further information : [email protected]