I am doing this event to support my colleague Toby Read who we recently learned that his 5 year old daughter Evie had been diagnosed with a very rare, currently incurable, degenerative brain disease called Ataxia Telangiectasia (“A-T”). 

 

Whilst Evie is a normal happy five year old with some small balance problems at the moment, the disease is relentless and will leave her wheelchair bound and severely physically disabled before the age of 10. Mentally the disease will not affect her but she will be trapped in a deteriorating body.  Tragically, life-expectancy is currently 18-20 years old for children with A-T, although 50% die much sooner from respiratory failure or a 1000 times higher risk of developing cancer.  It is a brutal childhood disease that has been described as combining the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiency, and cancer.

 

Because the disease is rare it attracts very little central funding and research is almost entirely dependent on donations and sponsorship.  He has set up a registered UK charity called Action for A-T staffed entirely by volunteers and all monies raised will go into research for a cure.   Jonny Wilkinson has kindly agreed to be patron and they have been explaining via national newspapers and appearances on television about the urgent need to get research funds into this condition.  If you would like to find out more or get involved, the website www.actionforAT.org explains how you can help and also contains a short film about Evie.

 

Despite the rarity of A-T, there are a number of promising research initiatives being explored, partly because the disease is also viewed as a good “model” for more prevalent later onset neurological diseases such as Parkinson’s, ALS and Alzheimer’s.  Generating funding to take these initiatives forwards is absolutely vital.  

 

I believe that the pace of medical science means that there is a cure is out there for this terrible disease and with your help we can make tangible progress in finding it. Even if it is too late to save Evie or improve her quality of life, then maybe it will not be for another child.

 

Every pound you donate will be of help to find a cure!