Louise James tragically lost several members of her family in 2016 in the Buncrana pier tragedy, including her son Evan, who had Duchenne muscular dystrophy. In the weeks following their death, Louise, along with over 100 members of Team Evan, completed the Belfast Marathon, raising a staggering £15,000 for Muscular Dystrophy UK.
Their inspiring effort will be put forward for new research into Duchenne. Louise is particularly interested in exon skipping projects; a treatment that could one day help boys like Evan.
Duchenne muscular dystrophy is a rare, progressive and devastating condition that affects around 75 boys in Northern Ireland. Boys are usually diagnosed at around five, and typically use a wheelchair by 12. Sadly, few boys live to see their 30 birthday.
Louise James said
My beautiful boy, Evan, showed amazing bravery and courage throughout his bright, but short life. We always dreamed of finding a cure for him. It feels great knowing that the amazing efforts of the Team Evan runners can be put towards new research. It would be great to one day see a cure developed to beat this cruel condition.
How you can help
Muscular Dystrophy UK has been supporting families affected by Duchenne muscular dystrophy since 1959 funding research to find a treatment for this condition. With your help we can continue to fund research which could improve the lives of individuals living with this condition.
Setting up a family fund is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our Family Funds.