Joseph had a great Christmas and New Year and was utterly spoiled by his grand parents and auntie and uncle. We think this year was the first year that Joey started to understand and get excited with presents. Like most children of his age (perhaps a bit younger) he seemed more interested in the wrapping [...]
Apologies for the long unintended silence from us. The months have whizzed by and we haven’t updated you on Joey’s progress in ages. Life, thankfully, has been good to us in recent months. Once Joseph was fully recovered from his gastrostomy operation in February, we decided that we should try and go away together for [...]
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 [...]
Just a very quick post to tell you all that Mark and Dave have completed the Cape Epic prologue in a great time and are in good shape for the rest of the race. Mark has been sending me updates via email so he must have internet access. The race can’t be that hard if [...]
Tomorrow is the big day for Mark and Dave – they will take part in the first stage of the World’s toughest mountain bike race: The Cape Epic. We wish them the best of luck. They’re going to need it – this really is a challenge to end all challenges. For those of you not [...]
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, [...]
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 [...]
Before we head away to spend Christmas and the New Year with family in the UK and Ireland, I just wanted to write an update on Joseph as we haven’t done one in ages and also to wish you all a very happy Christmas and New Year. Joseph is in better form after a fairly [...]
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 [...]