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.

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Angelina Mills and Mum Lisa Massingham 2, Photos taken by Chris Taylor www.christaylorphot
Lisa Massingham, 4th July 2012 at East Rudham in Norfolk, picture taken by Chris Taylor ht

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 pressthe 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 NewsThe Telegraph, BBC South East, BBC Radio Sussex & Surrey, BBC Radio Norfolk, Brighton & Hove IndependentEastern Daily PressNorth 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.

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The above was made possible thanks to our client, Karen Emanuel, CEO of Key Production, who donated her PR budget to help tell their story, and thus help a worthwhile charitable cause. This in turn came about with the help of Brighton-based neuropsychologist, Dr. Ashok Jansari, Lecturer in Cognitive Neuropsychology at Goldsmiths, University of London - a great communicator who'd heard about the girls' odyssey, and reached out for PR support.
 
A big thank you to our team member, Millie Buckingham, whose experience of working on this campaign led her to write this insightful and brave blog, 'Living A Rose Tinted Life', about living with a port wine stain - a condition linked to Sturge Weber syndrome.

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