Resources
Online course
Understanding CHARGE syndrome
This 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.
Course chapters include:
Diagnosis and medical aspects of CHARGE and genetics
Communication and sensory integration
Behaviour and social interactions
Education and the adult years
The course is always open, making it easy to access any time you need it. You can complete the full course, over 6-8 weeks (2 hours per week, self paced). Share it with your healthcare and education teams.
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
Publications
There are many publications on CHARGE syndrome. We’ve pulled together a short list of key papers written by international experts. They may not always be in plain English, but they’re valuable to share with your healthcare or education professionals.
Growth in CHARGE syndrome: optimizing care with a multidisciplinary approach
In this systematic review, we describe what is currently known about growth in CHARGE syndrome and how it is influenced by commonly seen clinical problems including feeding difficulties, hypogonadotropic hypogonadism and growth hormone deficiency. Furthermore, we provide recommendations for a multidisciplinary approach.
By Dieuwerke R Dijk, Gianni Bocca, Conny M van Ravenswaaij-Arts
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
A Checklist of Educational Needs for Individuals with CHARGE Syndrome, 2018
Genetic counseling in CHARGE syndrome: Diagnostic evaluation through follow up
Genetic counselling plays a vital role from the start, helping families understand the diagnosis, what it means for their child’s development, and where to find support. Early connection with specialists in deafblindness and sensory impairments, as well as ongoing access to resources, can make a big difference in supporting the child and family.
By Meg Hefner
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
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
Books
Books written by healthcare professionals and some great books written by parents.
Webinars
Victorian Deaf Education Institute seminar
Understanding Learning Challenges for Children and Young People with Multi-Sensory Impairments
Topics 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
Tube feeding
The Blend
A magazine-style resource for people who are new to tube-feeding. It shares stories, tips and recipes from parents, and professionals in the tube-feeding space.
Succeed
An Australian site for parents and carers of children with complex feeding difficulties. info on what to expect in the early days, Includes tips and tricks and short videos about tube feeding, to share with friends and family.