06 SEP 2014

Raising Awareness of Batten Disease

I was really proud to join BMX riders and skateboarders at a tournament at Deal skatepark to raise awareness of Batten Disease.

The tournament was organised by Jason Wilson to raise money and awareness of Batten disease. Jason's nephew Ryan has been diagnosed with the disease. Batten disease is a very rare nervous system disorder that usually begins in childhood. Around 200 children and young adults in the UK are affected. The disease leads to blindness, fits and progressively damages the ability to think. It is a terminal disease with very few sufferers living past the age of 30.

Batten Disease is truly horrible. It takes away life at a young age and takes away sight and the ability to think. As a genetic disease, parents are often wracked with guilt adding to the pressure on families trying to cope.

It was fantastic to see loads of young people get involved to support and help raise money. They were all keen to support Ryan and raise awareness of Batten disease. Jason did a fantastic job organising the whole event and raising awareness of this terrible disease. I wish him and Ryan well.


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Charlie Elphicke

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