This Christmas, Leinster Rugby and DEBRA Ireland are set to remember a brave young boy who passed away only a few weeks before he was due to lead the team out as a match day mascot.
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Emma Watson recently tweeted a message about EB to her 15 million followers in support of Sohana Collins, a twelve year old who was born with EB.
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Marie Carolan is a Flora Women’s Mini Marathon veteran and this year will be her 20th (9th for DEBRA Ireland). She fills us in on why she’d love to see three generations of her family take part and her training tips.
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Emma Fogarty in the Irish Daily Mail talking about what life is like living with EB & how doctors predicted she wouldn’t live more than a week at birth.
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The very inspirational Claudia and Liz were recently interviewed by Mark Cagney and Sinead Desmond on Ireland AM for EB Awareness Day. Watch the interview here
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Liz and Claudia were recently interviewed by Ailin Quinlan for the Irish Independents Health and Living Supplement. Well done ladies, the article gives such amazing and honest insight into living with EB. Click here to read the full article.
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The Cogan family recently spoke to Eilish O’Regan from the Independent about the impact of Budget 2014 on their family. The recent decision to offer free childcare to children under 5 will not benefit them and their 8 year old daughter Katelynn. Click here to read the full story.
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Last month saw the 10th anniversary of the death of Jonny Kennedy. For those of you who have seen the documentary ‘The Boy Whose Skin Fell Off,’ we don’t have to remind you who Jonny was.
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