Moving Forward - A sponsored toddle - Please sponsor Leila! - vimimn - Stopwasting - Action Duchenne - Fighting for a cure for muscular dystrophy

Moving Forward - A sponsored toddle - Please sponsor Leila!
05 July 2009

Leila is doing this walk so you will be sponsoring her.

A family event, where all are invited to walk around the animal enclosure in Golders Hill Park on Sunday 5th July, and raise sponsorship for doing so. All money will go to Action Duchenne.

What is Duchenne?
Duchenne is a severeMuscleWasting Disease forwhich there is no cure. The condition is usually
diagnosed in early childhood and affectsmainly boyswith rare instances in girls developing the
disease.Many young boys are inwheelchairs by the age of 10 and by their teenage yearsmost young
people are fully paralysed. Young people livingwith Duchennewill face a short life expectancy and
often die in their late teens early 20’s. On average two boys aweek are bornwith the disease and two
young peoplewill die fromDuchenne. We don’twant to lose another generation of young people to
this terrible disease, andwewant to end the devastation that families face knowing that their son’s
muscleswillwaste away and he is likely to die as a young adult.
What hope for the future?
For the first time the dream of a treatment for Duchenne is a realistic possibility. New genetic
research is under way in the UK to find ways of replacing or fixing the faulty dystrophin gene. But
progress is still hampered by the lack of funding needed to take this research forward to a bodywide
treatment for young people with this devastating disease.