Action Duchenne, which raises awareness and funds for research into Duchenne Muscular Dystrophy, has lobbied the Government to seek further funding for research into the condition.
Yesterday, boys living with the incurable muscle wasting disease, their parents and supporters lobbied MPs and marched to 10 Downing Street.
Although the gene that causes Duchenne was discovered in 1986, Action Duchenne says that since then the Government has provided only £2.2 million of funding for research and clinical trials for treatments and a cure.
The charity called on the Government to allocate £30 million of funding for new Duchenne research and clinical trials, increase the number of Centres of Excellence for Translational Research into this condition to cover the whole of the UK, and to ensure that all people living with Duchenne are given immediate access to new drugs and treatments.
Nick Catlin, CEO of Action Duchenne said: “The young people with Duchenne don’t have time on their side, we need this research to start as soon as possible so that it can really make a difference.”