Charge Syndrome

CHARGE Syndrome Association of Australasia aims to improve the quality of life for children and adults with CHARGE syndrome. The Foundation contributed towards the costs of three US-based keynote speakers at the CHARGEability conference.

Program Area:
Conference
Location:
Penrith, NSW
Amount:
$6,000
URL:
www.chargesyndrome.org.au
Project Dates:
September 2012
CHARGE kids

Background

CHARGE syndrome is a recognisable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. The disorder encompasses several birth defects: coloboma of the eye, heart anomalies, atresia of the choanae, retardation of growth, genitourinary system anomalies and ear anomalies and hearing loss. 

It is an extremely complex syndrome involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects and spend many months in hospital undergoing surgery and other treatments. Most have hearing loss, vision loss and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Approach

Due to the rarity of the condition, the Association’s conference is a major source of information for families. It also encourages new members to network with other families to support each other while discussing conditions and possible solutions for their children.

Conference presentations focused on the ability of children with CHARGE syndrome to perform to their highest potential as they grow, and for parents to be positive about the future.

Professor Tim Hartshorne, one of the keynote speakers the Foundation supported, is the author of several books on CHARGE syndrome. Prof. Hartshorne spoke on behavioural issues and how positive action from parents can benefit their children. Other keynote speakers included David Brown, who spoke on early education and development, and Dr Kasee Stratton, who specialises in pain issues.

 

Outcomes

Feedback from attendees was very positive. Face to face clinics with the speakers were hugely beneficial as they enabled parents to discuss specific problems in detail. There were many networking opportunities as advice was sought and received not only from the speakers but other parents with children in similar situations.

Conclusion

CHARGE Syndrome Association of Australasia is an important support network that displays innovation in the treatment and care of children with CHARGE syndrome. In encouraging and educating parents in the importance of positivity, they provide a valuable service.


The next CHARGE conference will in in Auckland in 2014 and several new families have indicated their willingness to attend.

 

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