Our CHARGE Assist team can support you in areas such as:
They can provide information and strategies on transition to pre-school, school or employment, or they can support you to help the therapists or teachers understand CHARGE syndrome and your child’s needs.
Our team can also connect you with other families in your region. It can really help to get in touch with others who share similar experiences and who can offer understanding, encouragement and support.
CHARGE Assist is a small team of volunteer professionals from the deaf/deafblind field and have 30 or so years of experience with CHARGE syndrome.
This service is provided free by phone or email. There may be costs associated with an onsite visit.
Our CHARGE Champions, as well as Association members, are your connection to families in your area. They are available to share their own lived experiences and will organise local meet-ups for families. Don’t hesitate to contact a CHARGE Champion, or anyone on the Association Board, anytime.
The CHARGE Syndrome Association of Australasia organises a conference every two years. A range of topics is covered relevant for families, individuals with CHARGE Syndrome, educators and for medical professionals.
Visit our conference page, for information about the next conference in April 2020.
CHARGE Syndrome Australia New Zealand
This is a parent-led closed facebook group, for local families, carers, people with CHARGE Syndrome, and also for those with an interest in CHARGE syndrome. The aim of the group is to provide a safe, understanding space, where members can share information and advice, learn from one another, celebrate together and support each other.
CHARGE syndrome adults 18+
This group is for adults who have CHARGE syndrome and 18+. No parents or professionals allowed (unless they have CHARGE syndrome).
Grandparents of individuals with CHARGE Syndrome
A place where grandparents can connect and discuss concerns and issues important to them. A place to have an open discussion about their feelings, their loss, and their gains.
Online course: understanding CHARGE syndrome
There will soon be available a free 6-8 week online course offering university-quality education on the latest knowledge and research on CHARGE syndrome from the world’s foremost experts in the field. The content will be delivered as a 6-8 week course via an innovative training tool called a MOOC (massive open online course). The course will be open to anyone in the world with an interest in CHARGE syndrome, and it will be free! Read more about the course content …
The course will be available in April 2020, but you can register your interest now.
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
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
Why I am Me
“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.
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.