Charity founded by Rowlands Castle mum in £1.2m fundraising drive to find possible cure for brain disease

July 15 is International Cask Awareness Day, and aims to draw attention to the rare gene disorder which affects just 27 people in the UK and 250 worldwide.

Cask is a brain disease that causes children to suffer debilitating seizures, unable to talk, walk properly, eat, drink or play.

The Cask Research Foundation, which is based in Rowlands Castle, is aiming to raise a mammoth £1.2m to fund scientific research grants with its ‘CURE CASK’ campaign.

Soon after its establishment earlier this year, the foundation was approached by the American scientific research team at UC Davis about the possibility of funding a cutting edge gene therapy called X reactivation.

If successful, the research will pave the way to creating a cure for the neurological disease.

Founder Laura Hattersley’s four-year-old daughter Sarah has Cask.

Laura said: ‘Cask is so rare there is currently no research into the disease or the gene here in the UK.

‘When we were approached with this once in a lifetime opportunity of a possible cure we just couldn’t say no.

‘We have a first rate Research Review Committee who vetted the proposal and ensured it went through our rigorous review process.

‘This resulted in a recommendation to our Board of Trustees.

‘The board voted unanimously in support of it, which highlights how exciting this opportunity really is.

‘We recognise the amount of funds we require is substantial, especially for a charity less than a year old.

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‘But seeing the strength children with Cask have, and the obstacles they overcome every day, puts it into perspective.

‘Our motto is ‘Searching for answers. Researching for hope’ and the prospect of this research certainly gives our community hope.’

Laura hopes to use her previous experience as a biology teacher to raise awareness in schools and local organisations of rare diseases and about the potential biotechnology has to transform lives.

She added: ‘The support we have already had from the local community of Rowlands Castle has been incredible.

‘The generosity and kindness we have seen has taken us aback.’