New Parent Support
A very successful way of supporting new and expectant parents is through contact with other parents who share similar experiences. Other families and individuals with CHARGE are available to provide peer support to new parents when a baby with CHARGE syndrome is born. These volunteers are able to visit at the hospital, at home, or to talk to on the phone. They can provide information, answer questions and give encouragement and support. To be put in contact with a parent or individual in your area, or to become a volunteer, please contact the Director of Family Outreach.
Ongoing Information and Support
Our Director of Family Outreach is available for ‘not so new’ parents who may want to talk to someone about a particular issue they are currently facing (toilet training, specific health issues, communication, feeding, finding employment etc.). They will put you in contact with other families or individuals with similar experiences. Various information resources are always available for families including newsletters, events and our Facebook page.
Education and Training for Parents, Carers & Medical Professionals
The overriding vision of the CSAA is to promote improved educational outcomes for all families and carers of CHARGE syndrome. The Director of Education and Training develops programs and services designed to maximise the management of CHARGE syndrome both from a family, social and medical perspective and in the wider community. This is done in partnership with families, educational institutions, industry, community and government. Services provided by the CSAA include the development of resource kits, research based trials, professional development workshops, conferences and workshops. Conferencing facilities are also available to discuss specific issues. For more information about upcoming training events, head to our Events page.
Coffee mornings, picnics and barbeques are organised by the CSAA and our State Representatives as a way of linking families. These gatherings provide an opportunity for parents to share experiences and information. They also provide a chance for children to meet and form friendships. For information about upcoming events, head to our Events page.
The CSAA organises a conference every two years. A range of topics are covered relevant for families and individuals with CHARGE, educators and medical professionals.
An informative newsletter is sent to our members at various times of the year. Subscribe by entering your details in the footer of this page.
Database of Medical Professionals
The CSAA are gathering a database of medical professionals who are familiar and experienced with CHARGE syndrome. The details are being collated and will be available soon. You can help to compile the list by sending your recommendations to our Director of Communications on firstname.lastname@example.org.
Other useful website links
The CSAA have gathered a list of useful websites of organisations that may assist with your CHARGE journey. Read the list here.
Book: Why I Am Me
“Why I Am Me” is a story about a boy called Sam who has CHARGE Syndrome and his friend Jess. As the story progresses Jess learns about CHARGE Syndrome and the challenges Sam faces on a day-to-day basis. Written by Carry Ward and Marie Patterson with illustrations by Penny Levett, the idea for this book was sparked by questions asked by a young person with CHARGE. As a result the book is written from a unique perspective. The story is supported by medical information, diagrams and photographs of children and young persons with CHARGE in New Zealand and Australia.