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Double Olympic gold-medal winning swimmer Rebecca Adlington, has accepted an invitation to become the latest Ambassador of the Encephalitis Society, a national charity and the only resource of its kind in the world supporting people affected by the illness.
Rebecca’s sister Laura was seriously ill in 2005 with Encephalitis, a life threatening illness which leaves many of those who survive with injury to the brain. Laura made a good recovery, however the experience and its effect upon the family has stayed with Rebecca. Following Rebecca’s success at the Beijing Olympics and her subsequent rise in popularity, Rebecca was determined to make charitable work part of her agenda – an obvious choice was of course a cause close to her heart.
Rebecca says: “Having seen at first hand how the illness affected my sister Laura and how little we knew about it at the time, my hope is to work with the team in order to raise awareness of the illness to help sufferers and their families. I’m pleased that my success in the swimming pool will enable me to increase the understanding of the disease and make sure that other families don’t have to go through the experience we had.”
Ava Easton, Development Manager, said: “We are absolutely thrilled to have Rebecca join our team of VIP supporters. We can’t wait to tell the members of the Society, especially since Rebecca has made it clear she wants to be really hands-on, meeting as many of them as she can. It is a timely year for Rebecca to come on board, 2009 is our 15th birthday and so this makes the year even more special for us all”.
Mathew got in touch with the Society in 2006 following a close friend being affected by Herpes Simplex Encephalitis and he formally became our Ambassador in 2007 following the subsequent support he had received during the illness and recovery of his friend.
Mathew is an English actor, most currently known for his role as Paul Lambert in the television series Emmerdale.
Mathew Bose was born in London and has lived in India, Milan, Paris, New York, and Los Angeles.,
In the early days of his career, Mathew was a model.
Mathew has appeared in the TV sitcom, My Family and starred in the shows such as Doc Martin, Cutting It, Silent Witness, D-Day and Coupling. Mathew has also produced and narrated the 2001 spoof documentary, American Mullet. He won the role of Paul Lambert in early 2004 and his first Emmerdale debut was in September 2004. In mid 2007, Mathew and former cast mate, Hayley Tamaddon aka Del Dingle were crowned winners of ITV show, Soapstar Superchef.
Tonia Buxton is a presenter, historian, writer, gourmet cook and beauty expert as well as a wife and mum to four children!
We welcomed her to The Society in 2016.
I was introduced to the Encephalitis Society by my friends Mathew Bose and Rebecca Adlington. When I first learnt about encephalitis, I just wanted to run away and hear no more as it was far too scary for me. I feared for my children. However, I realised that was not an honourable way to behave. The more I researched, the more I realised the importance of raising awareness of this terrible condition. I have listened to the stories of survivors and also the stories of the loved ones of those who did not survive. It was then I felt I would like to help where I can.
We are delighted to announce that three new faces are joining Mathew and Rebecca as Ambassadors for the Encephalitis Society: Susannah Cahalan, New York Journalist and author of the New York Times bestselling book “Brain on Fire: My Month of Madness” which was published in 2012, and Simon Hattenstone, Features writer for The Guardian for over 20 years. Both Susannah and Simon have had personal experience of Encephalitis.
Ava and Susannah were lucky enough to connect and have worked tirelessly together with Penguin Books to promote her book here in the UK.
Susannah says: “If you’re lucky enough to survive such a devastating illness like Encephalitis, the one gift you can give back is to share your own story with the world and hopefully help others. The Encephalitis Society is an important place where people who have all had similar (but always unique) experiences can come together, lean on others, and eventually move forward. I’m just so honoured to be a member of and Ambassador for this incredible organisation.”
Aliki is an amazing soprano singer and recently inspired all of us with the story of her amazing recovery from Encephalitis and her journey to become a semi-finalist on Britain’s Got Talent. Now she wants to help support The Encephalitis Society!
We are sure that she will do an excellent job and we are privileged to have her on board. The overwhelming support that Aliki has received from our Members has already shown us what a great Ambassador Aliki will be and we can't wait to work with her.
Aliki says "It was like being trapped in a bubble looking at myself from outside in and there was nothing I could do ...but to keep on believing...I am so honoured to have been made Ambassador as I will be here to remind everyone that we all have an angel sitting on our shoulder looking after us, and will make everything better. I am blessed that through my singing I have been given the opportunity to help raise awareness to everyone out there and give a hand in need to all of the people who are going through this terrible brain disease.”
Check out Aliki's facebook page for more information.
A keen Guardian reader, Ava contacted Simon last year and he agreed to be a judge for the recent Expressions of Encephalitis Event held in November 2012.
Simon says: “ I'm going to love being an ambassador because the Encephalitis Society is brilliant – supportive, inspirational and a real community. I'm interested in Encephalitis because I had a freak form (maybe all forms of it are freak forms) when I was young and was in bed for two years with it, and away from traditional education for three years. It shaped my life, or lives – because I feel as if I've had two of them; pre-encephalitis and post. So I feel I can relate to people who have or have had Encephalitis. Finally, who wouldn't want to be a member of a Society that can put on a do like the recent Expressions of Encephalitis?
If you are interested in reading Simon’s book Out of It you can purchase it here http://www.amazon.co.uk/Out-Story-Headache-Three-Years/dp/0340718692
Charlotte, a presenter and reporter with BBC Look North, was invited to become an Ambassador at The Society in March 2016. She was guest of honour at our Beacon Lighting to celebrate the 90th birthday of Her Majesty the Queen.
Charlotte says: "My daughter was seriously ill with encephalitis. Rushed to hospital after a seizure it was an agonising few days before the doctors realised what she had. They said it was a virus - encephalitis. To us it was a long name we couldn't remember, but we were told there was a chance it might leave her brain damaged.
It was a tough few weeks, but thanks to the wonderful care at Leeds, my daughter is now back to her cartwheeling self - happy and healthy. But it has changed us as a family. We don't take things for granted anymore. I want to do all I can to raise awareness of inflammation of the brain. As a parent we're warned about meningitis but we also need to know about encephalitis.The society has helped us deal with what happened. And we've been able to meet other people affected. That means so much, knowing we're not alone."
As the years have gone on and In particular more recently we have been very lucky to secure the support of some key celebrities and corporate supporters. These may change over time and we hope to keep this section up to date with those important people who are giving their time and money to keep us going. We also want to say a big THANK YOU!
Martin Kemp was the Society’s Patron from 2006 to 2009.
Martin stood down as patron in 2009 as a result of work and family pressures. Those of you who have an eye on the media will know that the return of Spandau Ballet has resulted in unprecedented attention and extraordinary interest from old and new fans alike. As a result Martin had to bid a fond farewell to some of his other interests.
Martin writes: “…..I have gained a lot from my involvement and our friendship. I can only wish you, Barbara, Mathew and everyone involved all my love and the best of the luck in carrying on the fantastic job you do for thousands of people around the world. I hope the charity has benefited from my involvement…and I will continue to support you in whatever way I can”
As you can see Martin has requested to stay on as friend and supporter of the society and we hope we will see him again in the future when his world is a little quieter.
“I have seen for myself the devastating effects of Encephalitis and ADEM, how difficult it is to diagnose early, and how bewildering this illness can be to patients and families. I do so want to support the awareness and research in the knowledge that if diagnosed and treated early the outcome can be very positive and full recovery is possible.”
Recently Felicity provided the narration forthe DVD version of our children’s storybook, ‘Gilley The Giraffe’.
Photograph: from left to right Ava Easton, Kath Lewis (Moving Media), Huxley Lewis, Felicity Kendal, Nimmi Channa (author of Gilley).
The Encephalitis Society is the operating name of the Encephalitis Support Group which is a registered Charity and Company Limited by Guarantee.
Registered in England and Wales No. 4189027. Registered Office as above. Registered Charity No. 1087843.