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Living with Dravet Syndrome - Charlotte's Story

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.

Bank Holiday Fundraising Extravaganza

We hope you all thoroughly enjoyed the Bank Holiday weekend! What a weekend it was for our superstar fundraisers up and down the country with a number of organised events taking place all over the UK - from Hackney to the Cairngorms you could be sure to spot a Dravet t-shirt!  Read the full blog post for a full update of this weekends events for Dravet Syndrome UK