Recently I had the absolute pleasure of meeting up with Evie Read. Evie is the daughter of Toby, a friend of mine from my Newcastle days, and she suffers from a rare condition known as Ataxia-Telangiectasia or A-T.
Click on the image of Jonny to play movie. To see Jonny Wilkinson's blog click here
Action for A-T is a charity that was set up by two parents following their daughter being diagnosed with a rare genetic disorder called Ataxia-Telangiectasia (A-T). Our mission is simple: To speed up the process of identifying a cure for A-T or treatments that delay or prevent the disabling effects of this childhood condition.
Read More
A-T is short for Ataxia-Telangiectasia which is a rare, neurodegenerative and progressive condition that starts in early childhood causing severe disability and premature death. There is currently no cure for it and nothing that can halt its progression. Babies are born ‘normal’ and then slowly, from around the age of 5, start to lose their independence. A wheelchair is needed usually by the age of ten, if not before, and in many cases, a feeding tube by the age of 12.
The immune systems of children who suffer from A-T are usually compromised and so they often do not live beyond their teens, usually dying of either cancer or a severe respiratory infection.
A-T has been described as having the worst symptoms of four diseases: cerebral palsy, muscular dystrophy, cystic fibrosis and cancer. Studies show that children who are affected by this debilitating disease do not lose any of their mental capacity and so over time they effectively become severely restricted by their deteriorating body.
The money raised by Action for A-T will be used to research A-T with the specific aim of finding a cure or a treatment that will delay the disabling effects of it. Since January 2012 Action for A-T has raised a substantial sum of money. A very positive start to a snowballing fundraising campaign with many enthusiastic supporters.
Would you be willing to give up a pint each month for Action for A-T?
If 500 people donate a monthly payment of £3.50, the price of a pint of beer, for one year, we would raise £21,000. Join Action for A-T's "Buy Us a Pint" campaign and help us reach this target by July 2013.
Select the monthly amount below then click on 'Buy Us a Pint!' icon.