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 [...]
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 [...]
On Monday 27 October 2008, Paul Hickey and Ciaran McNally, ran the Dublin City Marathon (26.2 miles) for ELA via Tri4Joe. Paul posted an impressively speedy 2 hours 45 minutes time and Ciaran finished in a very respectable time of just over 4 hours. We are so pleased that Paul and Ciaran have chosen to [...]
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 [...]
The eight Irish women that I wrote about in our last post have done a truly magnificent job by completing the Evening Echo Ladies Cork City mini marathon and raising 1,500 euros for the European Leukodystrophy Association. Thank you so much to Dee, Ger, Sharon, Maria, Deirdre, Kathy, Sinead, and Aideen, all of whom finished [...]