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Dravet Syndrome UK hold landmark 10-year anniversary fundraising dinner celebrating 10 years of providing hope for families with life-limiting epilepsy. To mark this momentous occasion will be holding a fundraising dinner on Thursday the 15th March 2018 at The Ned Hotel and Club in the heart of the London to raise vital funds and awareness.
We understand that living with Dravet syndrome is tough. Quite often, despite others making tremendous attempts to help and understand, only those living with the this catastrophic condition will ever truly grasp its full impact. Our charity is founded on the principle of supporting and connecting families. For this reason we provide a broad range of incentives including a dedicated and private online forum, grants for monitors and also a 16+ Adult Assistance grant to support Dravet children and parents as they make the transition into adulthood. We spoke to Julie Turner who is a single parent to Charlotte, aged 19 and living with Dravet syndrome, about her experience.
Friday 23rd June is world International Dravet Awareness Day! Help us raise awareness by downloading and displaying our poster.
A charity golf day was held on 9 June at Arkley Golf Club in Barnet, Hertfordshire, which was a huge success! The day had hoped to raise £5,000 which was to be split between Dravet Syndrome UK and Jacob's Dreams but the figure far exceeded the target and it now stands at £6,500.
We are very encouraged by the latest medical trial results from GW Pharmaceuticals of the application of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome.