Sturge Weber UK
We are proud to have worked on behalf of Sturge Weber UK to raise awareness of Sturge Weber Syndrome - sometimes referred to as encephalotrigeminal angiomatosis - a rare congenital neurological and skin disorder that affects around 1 in 50,000 people.
Two Halves Make A Whole Lot of Difference
We helped tell the heart-warming story of two girls, aged 11 and 19, both of whom were born with the condition, and underwent radical surgery as toddlers to disconnect the hemispheres of their brains. This was in order to treat life threatening epilepsy caused by the condition. This means they only function with one half of their brain, and thus face a range of challenges, including mobility and behavioural issues.
Despite the extreme challenges they face in everyday life, with great support from their families, Angelina and Caity decided to spend their summer holidays notching up 198 miles (the distance between their homes, in Norfolk and Brighton) by going on local walks. They wanted to raise awareness about their condition, and funds for the charity that has supported them since they were tiny.
By liaising with our media contacts to get their heroic story to the pubic via national and regional press, the girls succeeded in raising £8,000 for the charity - well above their target of £1,500.
Both girls, along with medical experts and family members, appeared on TV, radio, national, regional and local news platforms - including ITV News, The Telegraph, BBC South East, BBC Radio Sussex & Surrey, BBC Radio Norfolk, Brighton & Hove Independent, Eastern Daily Press, North Norfolk News and Latest TV, reaching a combined audience of over 72million!
Furthermore, we (and others) ensured that upon completion of their 198th mile in Brighton, they were made to feel like "princesses for the day" (their words) when the press entourage greeted them.