Outside of her work in DEC, Claire is passionate about the charity and has campaigned tirelessly over the last decade. raising awareness of the genetic disorder throughout the UK. characterized by progressive muscle degeneration and weakness. Her funding and awareness raising work has meant that more is now being done than ever to find a cure for the disorder.
Claire said, “I feel so humbled as I am fortunate to know so many people in the Duchenne community who are much more deserving of this than me but I hope that the honour will help us to create more awareness and give us greater credibility in our campaigning work!
Claire’s son Luke lives with the disorder and in 2012, she set up the charity “Leap For Luke”, to help raise awareness and help fund research into Duchenne. Claire’s family have a long history with Duchenne muscular dystrophy. Her grandmother had three sons with Duchenne. Claire knew she was a carrier and took Luke to be tested when he was just one, despite showing no symptoms.
After Luke was diagnosed, Claire and her husband Aidan came to a decision: “We decided that night that we could either let the heartbreak consume us or we could use that energy to firstly ensure that Luke will always be happy and secondly that we will fight tooth and nail to make sure that Luke’s fate wouldn’t be the same as his uncle and great uncles before him."
Claire will receive her MBE later this year, however the whole occasion has been tainted by sadness with the sudden death of her mother, Pamela, two weeks before Christmas.
Claire said “I couldn’t have done any of it without this amazing woman, my mum, by my side and I’m so glad I got to share the news with her before she passed away last month. Thank you Mummy and thank you to everyone who has supported Leap for Luke.”
A spokesperson for Dungannon Enterprise Centre said: "On behalf of everyone in Enterprise network we would like to congratulate Claire on her recognition and also pass on our deepest sympathy on the passing of her mother."