Rett Syndrome is a devastating neurological condition that occurs in 1 in 10,000 people.
It is caused by a mutation in the MECP2 gene on the X Chromosome. Whilst it is commonly seen in girls, boys get Rett Syndrome too. It’s not inherited - Rett Syndrome can happen to anyone.
Most children and adults with Rett Syndrome will never speak. They are usually unable to walk, or use their hands. They may suffer from breathing problems, swallowing and feeding problems, seizures, anxiety, gastrointestinal issues and severe scoliosis. Every aspect of their daily life is affected in some way.
People with Rett Syndrome battle their complex bodies every day.
They know and understand much more than they show, as their bodies struggle to obey the signals sent from their brains.
We know that Rett Syndrome affects the way the brain functions - it does not damage it. Around the world, including in Australia, researchers and medical leaders are making great strides towards effective treatment, and even a cure for Rett Syndrome.
A cure for Rett Syndrome is possible, and you can help us find it!
The Rett Syndrome Association of Australia works tirelessly to support and enhance the quality of life for persons living with the syndrome and their families, and be of assistance to anyone interested in the disorder.
Their mission includes providing assistance directly to families, raising community awareness, and identifying and funding critical clinical trials and research towards treatment and a cure for Rett Syndrome.
Rett Research Australia raises awareness of Rett Syndrome and funds to support the important research and work towards a cure in Australia.
This research effort is currently led by one of Australia’s foremost experts on Rett syndrome, Dr Wendy Gold, who has devoted nearly a decade to studying the pathogenic mechanisms of Rett.
A cure for Rett Syndrome is possible, and it's closer than you might think.