Story
I am running the Southampton Half Marathon on Sunday 5 September 2021, to raise funds for the Duchenne Family Support Group. I was lucky enough to meet Sue (Vice-Chairperson and Editor) and her son Matt two years ago, when there were endless questions and no easy answers. Sue and Matt were incredibly helpful, thoughtful and kind, which was so important and appreciated at an exceptionally difficult time. This is my way of saying thank you.
Duchenne Family Support Group is a national charity run by families for families affected by Duchenne muscular dystrophy. It provides a positive national support network of parents, their families and professionals. It complements other organisations by giving emotional support, positive experiences and helps families build friendship networks. They believe that nobody should be defined by Duchenne and that everyone deserves a good quality of life.
Duchenne muscular dystrophy is a progressive, muscle wasting, genetic condition affecting mainly boys. Most children start to show signs of muscle weakness at around age 3 or 4, when they start having difficulty running, hopping, jumping and climbing. They usually lose the ability to walk and begin to use a powered wheelchair between the ages of 9 and 12. Some children also have learning difficulties or autism. At present there is no cure.