What's the problem?
NHS failings are leading to premature deaths and poor treatment of thousands of people with muscle disease across the UK. There are shocking differences in life expectancy, with boys with Duchenne muscular dystrophy living up to the age of 30 in the north-east, while lives are limited to 17 or 18 years in other regions. This "postcode lottery" would cause a national scandal if it concerned a rare form of cancer, but muscular dystrophy is allowed to slip through the net.
How does it affect you?
Muscular dystrophy is a devastating condition, as I know all too well, having lost both my brother and sister to the disease. I watched my brother, Bill, die an agonising death - one that might have been avoided, had doctors at the time been better informed about his condition. I miss him desperately. Bill's legacy was to inspire me to campaign for better understanding, treatment and resources for those affected.
What are you doing about it?
As chair of the all-party parliamentary group, I persuade MPs and peers to put their political beliefs to one side and unite behind this important issue. The group recently conducted an inquiry into access to essential support such as physiotherapy, and we continue to summon NHS bosses to parliament to explain to us what steps they are taking to improve the lives of patients and their families.
How can we get involved?
Join the fight against this disease at muscular-dystrophy.org/ campaigns, where you can find out about joining a local campaigning "Muscle Group", or write to your MP asking that they get involved.