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On Wednesday 16th June I joined boys and young men living with Duchenne Muscular Dystrophy, their families and supporters who lobbied their MPs and marched along side them to No. 10 Downing Street and the Department of Health to demand an end to the continued serious under-funding for medical care and research into the condition.

Whistles, banners and balloons together with the voice of the boys and young men could be seen and heard as we marched the streets of London. A fantastic turnout on the day with families coming from all regions to help support Action Duchenne was great to see.

Various media came on the day and recorded the lobby which has been shown on various television stations across the UK helping to get the message out that the levels of care for these vulnerable children are not cut and that recommended ‘Best Practice’ care is available to all children and young men with Duchenne. It has been proven that such care adds 10-15 years life expectancy and considerably improves quality of life.

For many this was a difficult journey due to the severe nature of the condition but this did not deter them from being there and ensuring their voices were heard. Thank you and well done to everyone for the great support.

Have a look at my events section to see photo's of the day.