Well done Uncle John and team

imageWe’re sending a virtual big hug full of pride and thanks to my brother and Joey’s godfather and uncle, John, who completed his first marathon (Cork City Marathon, Ireland) today, Monday 1st June 2015, in a time of 3 hours 44 minutes, despite the gale force Irish winds, torrential rain and a pulled calf muscle! The fundraising target of 2015 euros has been smashed and money is still coming in (final update to follow soon). We are so proud and moved by all the organising, training and fundraising efforts that have gone on for the past few months, to raise awareness of ELA and Joey’s illness.

A big thank you to all the hard work and support from the relay teams: Aunty Dee, Madeline Foley, Rachel Hegarty, Tracey Keenan, Fionnula Byrne, Mark Savage, Paudie Dalton, Mickey O’Connell, Daniel Cronin, Colm O’Sullivan, Anna and Liam O’Driscoll, O’ConnerPyne team and anyone else I’ve left out accidently. Plus, all the half marathon runners: Conor Pyne, Sinead Pyne, Pauline Mitchell, Mark Pyne, Niamh Pyne, Tim Cronin, Denis O’Brien, Gerry Fitzgerald, Ciaran Mcnally and the many others who didn’t get to run on race day due to injury and also a special thanks for the patient partners, families, grandparents and friends who supported, helped, donated, fundraised, encouraged and who were always available to help out and give support.


Efforts like these give us incredible support and hope. Such solidarity will one day end the suffering of so many children and adults who have one form or other of leukodystrophy.

Our deepest and heartfelt thanks to you all.

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