Ryan and Ethan Caulfield McCormack from Tramore, Co.Waterford, were recently diagnosed with Adrenoleukodystrophy (ALD). ALD, is a deadly genetic disease that affects 1 in 18,000 people. It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain's neurons -- the nerve cells that allow us to think and to control our muscles. ALD causes relentless progressive deterioration to a vegetative state or death, usually within five years. It knows no racial, ethnic or geographic barriers.
Prognosis for patients with childhood cerebral X-ALD is generally poor due to progressive neurological deterioration unless bone marrow transplantation is performed early.
Ryan is currently in the US undergoing the process for a bone marrow transplant which he had on the 26th December last. Ethan is currently asymptomatic due to his age (childhood ALD only becomes symptomatic from age 5 generally) and will become a candidate for a bone marrow transplant when his meylin sheath begins to deteriorate. There is presently no cure for ALD.
The community in Tramore are currently raising funds to cover the remaining costs of the transplants (€1.5 million a head, some of which is being paid by medical insurance). Tramore, as a community have vowed not to have either boy denied treatment due to lack of funds.
To help with the mammoth fundraising process Michael McGrath GAA Tramore, Tramore athletic club and Waterford athletic club are aiming to recruit 500 runners, walkers and joggers to take part in the Viking Marathon on June 29th 2013. We want as many people to do the full, half or run part of the marathon in a relay team. We are organising training sessions for those who are putting on a pair of runners for the first time and are aiming to take part. Training is on a Monday at 7pm from Tescos in Tramore and on a Wednesday at 7pm from the Majestic in Tramore and as the time goes by more training will be incorporated to ensure everyone will reach their goal. A training plan will be given weekly and Davy Wade will be holding running clinics for all those interested in taking part.
We are asking everyone to take part to raise €125 each. This will cover your entry fee and a specially commissioned Ryan & Ethan Viking Marathon Challenge teeshirt to wear on the day.
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