In case you haven’t checked the Epic4Joe diary recently, you’ll be pleased to know that our heroes, Mark and Dave, are doing brilliantly – they have survived six days so far and have only got two more to go! It’s been very tough going in energy sapping temperatures of 40C. I’m exhausted just reading their [...]
Well after all the doom and gloom in my last post I have some good news! In fact, pretty much the day after the “doom and gloom post” Joseph seemed to start recovering much quicker. Maybe everyone reading the post sent good vibes? Who knows? I’m not the superstitious type, but it did seem a [...]
For several weeks I’ve been hoping to write a positive comment on Tri4Joe about Joseph’s progress. Something along the lines of “he’s fully recovered, and back to his old self again”. The truth is, unfortunately, that he’s is only recovering very slowly. In fact, there are times when we look at his tummy with its [...]
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 [...]
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 [...]
Thank you everyone for all your kind comments and well wishes for Joseph. Unfortunately, they were all a bit premature and you’ll have to send them all again on the 3rd of February! Joseph checked into the hospital (with the help of his parents of course) on Wednesday 21st January and stayed in overnight in [...]
We have received a report from the ELA which provides full details on all medical projects financed thanks to donations received. During 2008, the ELA received 3,963,652 euros and this is being spent on 47 different new and ongoing medical research projects in France, Germany, UK, Holland, Portugal, Greece, Italy, Spain, Belgium, Switzerland and the [...]
Ciaran McNally has gathered all his sponsorship money following his superb finish at the Dublin City Marathon on 27 October 2008 and has raised 1,075 euros for the ELA. Thank you Ciaran for all your hard work on this. Paul Hickey, who also ran the Dublin City Marathon on 27 October for Tri4Joe, has raised [...]
Last weekend we went to Center Parcs in Sologne (near Orleans, a little south of Paris). The weekend, which was organized by ELA, was intended to bring together many of the families in France who are affected by leukodystrophy. We were a little apprehensive at first, which I think is natural for newcomers since we [...]
We’ve just received the attached photos which moved me to tears. Our dear friends from our former triathlon club in the UK (Whiteoak Tri) have gone to incredible lengths over the past few months to raise money and awareness for the Myelin Project UK via Run4Joe. They completed the Beachy Head Cross Country Marathon on [...]