Archive for February, 2009


February 20, 2009

I am pleased to announce Epic4Joe. Our friends Mark Lawn and Dave Featherstone, will race the Cape Epic Mountain Bike Race in South Africa on 21 – 28 March. Their team is called Epic4Joe and they’re raising money for The Myelin Project UK. This event is my ultimate dream and I am secretly very jealous, […]

Posted in General, Other events No Comments »

Joseph recovering well

February 4, 2009

I thought I’d just quickly write a quick post to say that Joseph’s operation did go ahead today and was successful. He is currently recovering in intensive care. The doctors are very pleased with his recovery so far – he even managed a cheeky smile when he woke up! He’ll remain in intensive care for […]

Posted in Joseph's Life 4 Comments »

A surprise phone-call

February 1, 2009

I don’t know where to start. We’re all excited having just spent well over an hour on the phone with Professor Yanick Crow. Based in the UK, Prof Crow is the person who, a couple of years ago, discovered the four genes responsible for Aicardi Goutieres Syndrome (AGS). He has in the last 10 years […]

Posted in General, Joseph's Life 2 Comments »