Flying for Rett Syndrome

Two Hungarian sportsmen set out to accomplish a daring trip by air from a small town in Hungary (Keszthely) to Sydney, in a self built ultra-light aircraft. One of them is chief pilot Andor Kantas who is a father of 3 children where one is affected by Rett Syndrome.

The aim of the flight is to raise awareness of Rett Syndrome. Mr Kantas and his co-pilot Csongor Latki arrived at Alice Springs on the 19th of January and this week landed safely in Brisbane. They accomplish their 21,000 km trip when they finally arrive at Bankstown Airport Sydney on Thursday, 30 January 2003 at approximately 2 PM.

Some children affected by Rett Syndrome along with their families will be there to greet their heroes to congratulate them and thank them for their amazing efforts by helping to raise awareness and funds for research of this devastating disease.

Rett Syndrome is a tragic disorder, believed to be one of the most common causes of severe progressive intellectual disability in females, and affects up to 1 in 10,000 female children. Affected girls develop normally for the first six to twelve months of life but then, mysteriously, development stops and even reverses. The disorder results in severe disability and for most the inability to communicate or be independently mobile. Though there are some people in their 50s with the disorder, on average, most sufferers have died before they reach 20. Some have died under 10.

Researchers at The Children's Hospital at Westmead, led by Associate Professor John Christodoulou, are now working towards improving understanding of how genetic faults in the MECP2 gene lead to the devastating problems which Rett girls and their families face.

The long term dream of families who have children affected with the disease is that some day we may have newborn screening for Rett Syndrome, and then be able to start preventative treatments even before the girls show any signs of the disease. The Rett Syndrome Australian Research Fund which is a voluntary organisation raises ongoing funds to keep this vital research going. Tax Deductible Donations can be made by calling the Rett Syndrome Australian Research Fund on 1800 177 111.

For further information, please contact:

Rett Syndrome Australian Research Fund
1800 177 111

The Children's Hospital at Westmead
(02) 9845 3364