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The Ryan and Ethan Viking Marathon Challenge

The Ryan and Ethan Viking Marathon Challenge
 
TO ALL GAA CLUBS ,
                                 CLG Mícheal Maccraith in Tramore are writing to every GAA Club in the County in an effort to enlist your help for the Ryan and Ethan Viking Marathon Challenge .We have teamed up with Tramore AC and Waterford AC to help promote this vital cause . 
                                  
         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 recently recieved his bone marrow transplant in America .

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.

We 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).
 
     Our request to you , our fellow GAA Clubs is simple . On 29th of June this year , the Viking marathon will be run between Waterford City and Tramore . We are looking for teams to enter the Marathon and raise sponsorship on behalf of the boys . 
      You can enter teams of  4 , 3 , 2 or even run the whole lot as a team of 1 . We have attached photos of the 2 boys , a copy of the Poster and Entry and Sponsorship Cards . 
      We want each individual to raise €125 in sponsorship . In return for this we will Enter your team into the Viking Marathon , you will receive a Save Ryan and Ethan T-Shirt and a Viking Marathon T-Shirt . If you need more information please click on the following links 
 
 
 
 
or ring……. Juvenile Secretary Paul Rellis on087 9728208
or ……………PRO Michael Crowley on 087 7655507 . 
 
Our target is to get 125 teams to take part , we have many pledges already but due to the scale of the funds needed to treat the 2 boys we need to spread the net as wide as possible .
 
                                                           Many Thanks for taking the time to read this letter 
                                                                     We look forward to hearing from you in the near future .   Ryan and Ethan original photo #1 Ryan and Ethan original photo #2 Ryan and Ethan original photo #3 Ryan and Ethan photo #4 Ryan and Ethan photo #5 Ryan and Ethan photo #6 Ryan and Ethan photo #7 Ryan and Ethan photo #8 Ryan__Ethan_Viking_Marathon_Challange_29th_June_2013 (1)

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