Author Archive

Well done Uncle John and team

June 1, 2015

We’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! […]

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Mixed emotions in Paris

April 1, 2015

As always, the annual ELA family get-together in Paris on 27, 28 and 29 March 2015, combined with the AGM and medical researchers meeting on the different leukodystrophies sent our emotions in all directions. For some of the families that we have become friends with over the years, there’s always a few heartbreaking moments when […]

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From the past week…

March 23, 2015

Joey had a busy week, from a birthday party for his friend Alice to handi-skiing in Tignes and meeting some ELA supporters such as the 2013 Women’s Wimbledon Champion; Marion Bartoli, a French TV comedian; Titoff and the Olympic Silver Medalist in the Ski Half-pipe; Marie Martinod. The ski resort in Tignes invited 3 families […]

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Long time no update

March 21, 2015

Wow, it’s been so long since we updated Joey’s blog, I don’t know where to begin. There never seems to be enough time or energy left at the end of each day to put fingers to the keyboard! The main push in getting Joey’s blog started again is thanks to my brother John who is […]

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Mission accomplished

July 1, 2013

We made it! Our team finished 5th (out of 13 female teams) and I pushed Joey in his wheelchair across the finish line with his arms in the air delighted with all the applause, cow bells clanging and crowds cheering. I completed my 15km leg in 1hr 48 minutes. It was an emotional day. Thank you […]

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Ultra Trail for Joe and his ELA friends

June 19, 2013

Last year I promised our lovely neighbour Isabelle that we would run together in the 2013 Grand Duc ultra trail of the Chartreuse mountain range and raise some money for ELA. I’m sticking to my promise. On Sunday 30th June, we’ll be doing the team relay event: 5 women, four of us from the plateau where […]

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VIP Joey meets the French President

December 17, 2012

Saturday was very special. Joey went to the children’s Christmas party at the French presidential palace in Paris where he met the French President; Monsieur Francois Hollande and his partner; Valerie Trierweiler. Joey was invited to the palace along with some of his ELA buddies.  In total, there were 600 children invited and the palace was […]

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Mets tes baskets et bats la maladie

October 27, 2012

This week has been the week of ‘put on your trainers and beat the illness’ throughout national schools in France. Supported by the minister for education, a week of educating the young about leukodystrophy and fundraising for ELA has been carried out in 850 schools, with 250,000 students taking part. The week started off with […]

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Going downhill…

October 22, 2012

…in a positive way! Joey and a few of his friends enjoyed a trial ride on a cimgo (quad bike steered and controlled by a pilote who stands at the back) yesterday at a nearby ski resort. Great fun! A definite ‘yes’ for a longer descent next time. A trial ride just wasn’t enough for […]

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Six years already

October 9, 2012

We marked Joey’s sixth birthday by spending Saturday afternoon at the bowling alley with some of his friends and classmates. After a few too many birthdays lost as to what we could organise for Joey and his friends, I took heart after one of the other Mum’s organised a party at a local play gym […]

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