Learning about CHARGE syndrome
Online course: understanding CHARGE syndrome
Understanding CHARGE Syndrome is a free online course offering quality education on the latest knowledge and research on CHARGE syndrome from the world’s foremost experts in the field. It will significantly raise awareness of CHARGE syndrome amongst health and educational professionals and will strengthen the capacity of families and care givers in supporting individuals with CHARGE syndrome. The course is always open, making it easy to access the information any time you need it.
You can complete the full course, over 6-8 weeks (2 hours per week, self paced).
Publications
CHARGE Syndrome Check-List: Health supervision across the life-span from head to toe
A comprehensive approach to health screening and management for individuals with CHARGE syndrome is essential. We developed a checklist organized by body system and age to guide the healthcare provider in their approach to care. The checklist was evaluated using a modified Delphi method to develop a final consensus.
By Dr Kim Blake
Behaviour in CHARGE Syndrome, 2017
This article addresses how pain, sensory issues, and anxiety may impact the behavior of individuals with CHARGE syndrome, and how the development of self-regulation skills might help to mitigate some of the behaviors.
By Timothy S. Hartshorne
A Checklist of Educational Needs for Individuals with CHARGE Syndrome, 2018
This checklist could be used by a multidisciplinary team as a starting point for brainstorming possible services, for a school IEP meeting, or for a funding plan.
Authors: Lillian J. Slavin and Timothy S. Hartshorne
The education of learners with CHARGE syndrome, 2017
This research paper lists the potential learning characteristics of the learner with CHARGE and discusses the differences and similarities of learners with CHARGE syndrome, to learners from the deafblind community.
Author: Gail Deuce
A collection of stories providing a unique insight into how people with CHARGE syndrome have lived their lives and how they have touched the professionals who have worked with them. The stories are of individuals with CHARGE syndrome from around the world.
Author: Andrea Wanka
Books
Hey, I reached adulthood, now what?
A collaboration between CHARGE Syndrom e.V. (Germany) and the CHARGE Syndrome Association of Australasia, this fantastic new resource focuses on adults with CHARGE syndrome talking about school, job, living and independence.
Developed by Claudia Junghans and our very own Rob Last, and featuring stories from Ellen Howe, Belinda Arnell, Sean Rich and Sarah Dalton and other adults from around the world.
CHARGE Syndrome (Second Edition)
Authors Tim Hartshorne, Meg Hefner and Kim Blake have produced the second edition of the book CHARGE syndrome.
The new edition, co-edited by Kim Blake, includes a chapter on educational issues, updated references and revised chapters, additional images and illustrations.
A companion website available after purchase, with links to related videos and downloadable versions of the checklists described in the book.
Available for purchase at Plural Publishing.
Why I am Me
Published in 2011 by CHARGE Syndrome Australasia.
“Why I Am Me” is a story about a boy called Sam who has CHARGE syndrome and his friend Jess.
“Why I Am Me” is a must read for those whose lives are touched by a person with CHARGE syndrome.
All profits from the sale of this book go towards improving the health and welfare of children and adults with CHARGE syndrome in New Zealand and Australia.
For bulk orders please contact the association to confirm quantities and shipping costs.
Hiya Moriah
A beautifully illustrated, rhythmic story about a young girl's life with CHARGE syndrome. Through her brave attitude, and silly humor, Moriah is an inspiration for us all. This is a book that families can enjoy together with a timeless message about love and acceptance, and just saying "hiya" when making a new friend with different abilities.
Yahya in CHARGE
Written by Eman Kanaani, this book tells the story of her son, Yahya who was born with CHARGE syndrome. It is a journey through Yahya’s first three years and in Eman’s words ‘it is written in a comic positive way that is ideal for both kids and their parents’.
Conferences and presentations
Victorian Deaf Education Institute seminar
Understanding Learning Challenges for Children and Young People with Multi-Sensory Impairments
Agenda and time stamps
Effective strategies for supporting and improving educational and communication outcomes for multi-sensory impaired learners.
Professor Tim Hartshorne, Professor of Psychology, Central Michigan University
Time stamp: 00:07:50Intervention strategies within a multi-tiered system of support to students with multi-sensory impairments and ASD.
Professor Daniel Gadke, Mississippi State University
Time stamp: 01:38:02Explores the issues surrounding sexuality and wellbeing for students with multi-sensory impairments
Dr Kasee Stratton-Gadke Assistant Professor Mississippi State University
Time stamp: 02:31:02Multi-disciplinary assessments of students who are deafblind or have multi-sensory impairments
Professor Nancy Hartshorne, School Psychologist , Delta College, Michigan
Time stamp: 04:22:39Exploring issues around self-stimulation, self-regulation and multi-sensory impairment
David Brown, Deafblind Educational Specialist
Time stamp: 05:06:00