I'd never heard of Rett syndrome until a few weeks ago when my colleague asked me to help raise funds for RettUK by running the British 10k on 11th July. Rett syndrome is the most common genetic cause of severe disability in females (and less commonly males).  It is not hereditary, so it can affect anyone.

Babies with Rett syndrome appear normal at birth but, around 18 months, their development stops and they go through regression. They will then loose speech, mobility and the ability to use their hands. Most develop epilepsy and have breathing difficulties. All will have profound and multiple physical and learning disabilities and be totally reliant on others through out their lives.

As with any disability, the impact is not only upon the child but also upon the whole family and carers too. Rett UK seeks to support the person with Rett syndrome and their family and carers. It also helps educate professionals to help them provide a better service to those affected by Rett syndrome.

There is currently no cure for Rett syndrome, but some recent research advances – part funded by Rett UK - suggest that a cure is possible. Excitingly, many consider that a cure for Rett syndrome could help find cures for other genetically similar neurological conditions such as Autism, Parkinson’s Disease and Schizophrenia.