Friday, 23 May 2014

The future for epilepsy

There are many misunderstandings around and certainly much stigma about epilepsy. This week was national epilepsy week, when the various organisations connected with this condition seek to raise awareness and fund raise for support.

I was pleased to be asked by 
Young Epilepsy to speak at their research launch in the State rooms of the Speaker’s House in the Commons. As the chair of their education committee told me, there is likely to be one person in every primary school with this condition and up to 5 in each secondary school. Young Epilepsy themselves run a world-renowned school and college at Lingfield in Surrey and do significant research there, as well as research with Great Ormond Street Hospital and UCL’s Institute of Child Health. 

This week’s event was launching Young Epilepsy’s 2014-2017 research programme, Creating Brighter Futures. Its two broad aims are to further identify the needs of the 112,000 young people in the UK who live with epilepsy, and then to support new strategies and interventions to make their lives better. These include everything from evidence of the effects of physical exercise on children with epilepsy, to embedding their work in Universities so that young people living with the condition are properly supported when living away from their families for the first time. There is still a long way to go before the public are as well-informed about epilepsy as they are about other conditions such as autism, but this kind of work is what we need to improve this situation.

They have also nearly completed a £10 million fundraising initiative for new educational buildings, which will replace their school site in Lingfield with a modern building which is fit for purpose. If anyone can spare the money to complete the project - do get in touch! They cut the turf only a few weeks ago so the project is well on the way.

It was great to be able to support a charity that really shows the sector at its best. It combines campaigning and advocacy with research and delivery. It is an old charity - founded in 1897 - that has refocused and reformed over its long history, but it retains its core mission to support young people to live active lives. As I said at the launch, we depend on charities like this. They are indispensable in raising awareness and providing support.

And next up is to go down to Lingfield and visit. I promised that I would!

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