Charity set up by local mum gets cash boost

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A CHARITY set up by a Hampden Park mum has changed its name and been given a cash boost by the Hailsham Lions.

IDEA League UK, which was set up by Marie Baker in 2009, is now called DRAVET Syndrome UK.

Marie set up the charity because her daughter Aimee, five, was diagnosed with the rare and life-limiting condition Dravet Syndrome.

Due to the lack of information and resources for sufferers and their parents Marie, her mother-in-law Frances and two other mums set up the charity to help families affected by the condition.

The charity was recently given £332 by the Hailsham Lions to produce 2,000 information leaflets which will be sent to medical professionals and newly diagnosed families

Marie said, “These leaflets can be a lifeline to new families who have previously found it very difficult to access any accurate information on Dravet Syndrome.

“We are proud to have four wonderful professional advisors and Professor Helen Cross from Great Ormond Street Children’s Hospital has written the medical text for this leaflet.”

The charity was pleased with its success in 2010 after hosting the UK’s first ever Dravet Syndrome Professional & Family conference, which was attended by 160 people.

They are hoping 2011 will be just as successful as they award their first research grant.

See www.dravet.org.uk.