The Society - The People

The People who work for and with the Society are its greatest asset. They are all dedicated to helping people affected by encephalitis.

Our President - Professor Barbara A Wilson, OBE, CPsychol, ScD., FBPsS, FMedSci, AcSS

Professor Barbara Wilson, OBE agreed to become the Society’s first President in 2007 and her Presidential Inauguration took place in London on 17th October 2007.

The Society is delighted to welcome such a prestigious, respected and warm person as Professor Wilson.

Barbara has been married to Mick for 45 years and had 3 children soon after marrying - Sarah born 1963, Anna born 1964 and Matthew born 1966. Sarah died in Peru in 2000 in a white water rafting accident. Her body was never found. Barbara and her husband wrote a book about their experiences of coping with bereavement called "First Year, Worst Year: Coping with the unexpected death of a grown up daughter" (by Barbara & Michael Wilson published by Wiley in 2004 and easily available on Amazon). Barbara’s surviving daughter, Anna, is a clinical psychologist and works at the University of East Anglia in Norwich. She has two daughters Rosie who is 20 and Francesca who is 12. Barbara’s son, Matthew, married a Chilean winemaker and lives in Chile in the Colchagua Valley. He is a photographer specialising in wine and food (www.mattwilson.cl) He has 2 sons, Samuel who was born in 2005 and Max who was born in 2007.

Barbara has also recently started running Marathons, training in 8 different countries and here is Barbara training in New Zealand.

Barbara qualified as a clinical psychologist in 1977. Since 1979 she worked in Brain Injury Rehabilitation, first at Rivermead Rehabilitation Centre in Oxford, then at Charing Cross Hospital, London and at The University of Southampton Medical School. Since 1990, Barbara has been employed as a senior scientist by The Medical Research Council’s Cognition and Brain Sciences Unit, Cambridge. In 1996, she established, and is the Director of Research at, The Oliver Zangwill Centre for Neuropsychological Rehabilitation in Ely - a partnership between the local NHS Trust and The Medical Research Council. Barbara is also a visiting Professor of Rehabilitation Studies at the University of Southampton.

Over the years Barbara has held several grants to look at new assessment and treatment procedures for people with non-progressive brain injury, and has published 16 books, 8 widely used neuropsychological tests and over 260 journal articles and chapters mostly on rehabilitation. Barbara is also the editor-in-chief of the journal Neuropsychological Rehabilitation (established in 1991).

Barbara sits on several national committees and has been on the governing board of The International Neuropsychological Society and until February 2007, she was their president.

Barbara is chair of the World Federation of Neuro Rehabilitation’s (WFNR) Special Interest Group in Neuropsychological rehabilitation and is also on the management committee of the WFNR .

Barbara lectures throughout the world particularly in Europe, North and South America, Australia and Hong Kong.

In 1984 she was awarded The May Davidson award for outstanding contributions to Clinical Psychology within 10 years of qualification.

In 1998 Barbara was awarded an O.B.E. in the Queen’s New Years Honours List for services to medical rehabilitation.

In 2000 she was awarded a distinguished scientist award from the British Psychological Society.

In 2002 The Encephalitis Society awarded her “Professional of the Year” and in 2003 she won The British Psychological Society’s annual book of the year award for her book “Case Studies in Neuropsychological Rehabilitation”.

In 2004 Barbara received an honorary doctorate from The University of East Anglia and in 2006 she was awarded the Robert L Moody prize from the University of Texas for contributions to rehabilitation.

Professor Wilson is a Fellow of The British Psychological Society, The Academy of Medical Sciences and The Academy of Social Sciences.

Barbara recently retired but still gives many talks and workshops around the world and still continues to write papers, chapters and books.

Martin Kemp, brother of Gary Kemp, is an English actor and former pop musician. He was born in Islington, London.

In the 1980s he and his brother Gary Kemp had a great deal of success in the New Romantic band Spandau Ballet. Their most popular album was titled True. He also performed on the popular 1984 famine relief project song Do They Know It's Christmas, written by Bob Geldof and Midge Ure.

He and his brother Gary branched out into acting in 1990, both of them appearing in the British film The Krays in which they played the notorious gangster twins, Ronald and Reginald Kray. Their performances received a great deal of critical acclaim.

Since The Krays, Martin has been in the public eye more than his brother. He moved to Los Angeles in the early 1990s and made appearances in television series such as The Outer Limits and Highlander. He also appeared in several Hollywood films such as Waxwork II: Lost in Time (1992) and Embrace of the Vampire (1994).

In 1995 he moved back to the UK and after recovering from a brain tumour he had a guest appearance in the ITV police drama series The Bill. He went on to became popular for his role as villain Steve Owen in the BBC's top soap opera, EastEnders from 1998 to 2002. His character was involved in some of the soap's highest rated story lines such as the Saskia Duncan murder and Who Shot Phil?. By the time he left the series, he was one of the best-known faces on British television.

He then switched over to appearing in several television dramas for ITV such as The Brides in the Bath in which he played real-life murderer, George Smith and Can't Buy Me Love opposite fellow EastEnders star Michelle Collins in which he played a man who conned his wife and friends into believing he had won the lottery. In 2006 he starred in a two-part ITV television drama thriller Love Lies Bleeding and made a guest appearance in an episode of the murder mystery television series Marple.

Martin has been married to Shirlie Holliman since 1988. Holliman is a former backing singer of the group Wham! and one-half of the 1980s pop duo Pepsi and Shirlie. The couple have a son and daughter together. Martin became patron of the Encephalitis Society in 2006, following his experiences of neurodisability.

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.

Mathew now lives near Leeds with his partner James, a television director, and he also has a home in Islington,

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.

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!

The Aztec Hotel and Spa have chosen the Encephalitis Society as their Charity of Year for 2008/2009! Chris Hill, their General Manager says:

“The Encephalitis Society is a little known national charity, dedicated to supporting people who are affected by encephalitis and the professionals who support them. This year the Encephalitis Society very much came to our attention when we became aware of the illness through one of our Spa members, whose husband is a sufferer. Annually we ask all of our employee’s to vote for an organisation or charity they would like to nominate and raise money for, and for us to support in the coming year. Here at the Aztec Hotel & Spa, Bristol we wanted to raise awareness of the charity, and have therefore chosen the Encephalitis Society as our chosen charity for 2008/09.”

Abigail Hercules is another keen supporter. Mathew Bose, our Society Ambassador introduced Abigail to the Society when she attended (and provided a live musical session!) at our Presidential Inauguration and Book Launch Cruise in London during October last year. After the gig Abi posted this on her website:

“I recently did a lovely gig, cruising down the Thames, in aid of The Encephalitis Society. This small charity for a lesser-known but none the less tragic and widespread condition is run by a wonderful 'family' of enthusiasts-sufferers, their families and supporters, headed by the tour de force that is Ava Easton. Dzal and I were made to feel very welcome. It was a heart-warming and inspirational evening and for that reason, I urge you to support them.”

We were so amazed by Abi and her talent we used one of her songs (Quito Moon) for the soundtrack to the DVD we produced of the Society’s evening’s cruise.

Abi is a singer/songwriter and actress whose TV appearances include Spooks and The Bill, and whose musical talents include work with her band the Easy Tigers and 4 poofs and a piano along with gigs at Glastonbury.

Emmerdale also continue to support us as a result of Mathew Bose’s connection with us. Several of the cast attended our DVD Launch in Leeds in 2007 and they have supported us financially during both 2007 and 2008. So do check Mathew out on the Show on ITV1 and also visit their website www.itv.com/emmerdale/

MOOR E B L ATCH –s o l i c i t o r s have been long standing supporters of the Society since its very early years. They help us with pro bono legal work, attend Society events and provide advice to our members, also supporting our events with donations and their attendance.

Sobor Smoothies are another supporter . Drink Sobor is a new company creating fruit smoothies which can be drank alone or as a mixer with alcohol. The company’s founder is Rhodri Davies, a member of the Society whose father was affected by encephalitis. Rhodri felt that along with launching his new business he also wanted to raise awareness of the Society and our work, so all his labelling and artwork contain the Encephalitis Society name, logo and web address. www.drinksobor.com Rhodri (and his wares) also attended the cruise event in October 2007 and will be appearing again soon at a Fundraising Ball in aid of the Society in Bristol during July 2008.

Moving Media Marketing Ltd is a strong team of creative video and new media designers based in the heart of the North's leading media Capital, Leeds.

They provide innovative new media, design and digital video solutions for a variety of business applications and educational requirements.

Working closely with their clients the Moving Media team, led by Kath Lewis, continue to exceed expectations, providing a first class service and excellent value for money. Moving Media have worked with the Encephalitis Society providing charitable rates and in many cases pro bono work in order to support us. Under their guidance and patient approach we have learnt a huge amount in how we can use media to strengthen our message and raise greater awareness of Encephalitis. Moving Media are often a silent but powerful presence at our events. www.movingmedia.co.uk

Elaine Dowell, Resource Centre Manager

Elaine has been with the Society from its inception. Her son was ill with encephalitis at the age of 7 and her experience of dealing with the consequences has been the driving force behind its initial growth. Elaine co-manages the Society with Ava and is responsible for the Information service. She has responsibility for editing the newsletter, the web site, the Society’s database and Society publications. Elaine’s son, Andrew, is now 23 and lives in a Camphill Community in Scotland.

Her husband Keith, is a trustee of the Society and acts as Company secretary. They live on an organic smallholding with goats, ducks and hens and spend their spare time walking the North York Moors.

Heather Sturgess, Finance Administrator

Heather has been with the Society since 1998 when the Encephalitis office was still in a bedroom. Although not at the birth of our organisation she certainly saw it through its childhood years. Heather is responsible for all matters financial, banking cheques, paying bills and keeping the accounts. She still enjoys contact with members when an opportunity arises. Married with two grown up children and lives in Pickering

Ava Easton, Development Manager

Ava co-manages the Encephalitis Society with Elaine and has spent the last seven years developing and managing the Support and Education Services for the Society. She has an Honours degree in Social Sciences/Social Psychology, is a qualified and experienced teacher and trainer, and is currently studying for her doctorate with the University of York. Ava has produced and published several articles on various aspects of Encephalitis and its after-effects; she also speaking at meetings for members, and at conferences and seminars for health and social care professionals around the UK and abroad.

Ava has a keen interest in self-management techniques for people who go on to experience long term difficulties following Encephalitis. Ava has worked on several research projects, the findings of which have been presented internationally. She is currently involved in research at University of York looking at Pain following Encephalitis and the Role of Neuro-narratives in the Reconstruction of the Self following Encephalitis. In her spare time Ava enjoys reading, listening to music, fine food and wine, and loves all animals.

Jon Ainley, Support and Membership Co-ordinator

Jon is the voice most readers will be familiar with, Jon has responsibility for the Support line and has been a lifeline for many people. He will not only listen and give information and advice but will also go away and find the people and services needed to make a difference. Jon is also responsible for supporting people with their fundraising efforts. Prior to joining the society Jon worked as a day centre officer for North Yorkshire County Council. He has two children Justine 20 and Ben 17 Jon is keen on classic cars, old buildings ( neither of which he owns) travel and all things wildlife.

Rachel Wilson – Support Services Administrator

Hi, my name is Rachel and I have worked for the Encephalitis Society since March 2005, my main role is to assist Ava Easton (Development Manager) as her Personal Assistant which is a position I thoroughly enjoy and look forward to the 3 days a week in which I work at the offices in Malton.

I am 36 years old, live in Thornton-Le-Dale on a large arable/pig rearing unit and am engaged to be married to David. Between us David and I have 3 children the eldest being Michael (16), Kayleigh (13) and Beth (12) so when I’m not at work I am busy helping David around the farm and looking after the teenagers! We also have 3 English Springer Spaniels – 1 black & white called Bonny aged 7, 1 liver & white called Dice aged 3, 1 black & white aged 4 months called Kim and last but not least 1 Jack Russell Terrier aged 2 ½ called Pip.

So as you can see I have a rather busy life but when time allows I do enjoy eating out and drinking good wine.

Tamar Waller – Administrator

Tamar joined the staff team in May 2007, much to the relief of the rest of the staff. We had been without a general admin worker for over eighteen months as a cost cutting exercise but the strain was beginning to tell. Thankfully an application to Lloyds TSB to part fund this post was successful and this, added to the member’s exceptional fundraising efforts last year, gave us enough spare funds to add to the team. So our letter opening days are over and your mail will be efficiently dealt with in future.

Alina Popa – Reginal Representatives Co-ordinator

Hi, my name is Alina and I have just joined the Encephalitis Society. I am originally from Romania, where I have lived for most of my life. My family, namely my mother, a brother, a sister and three nephews still live there. I have worked as a nurse for many years and I have a second degree in Law. Four years ago, I decided to come in England to work for a while in a nursing home as my first degree was in nursing. I never thought that I would start a new life here. At the moment I live in Bishopthorpe with my boyfriend. My role at the Encephalitis Society is to be a Regional Representative Coordinator and I am looking forward to catch up with everybody and everything. I am very keen on reading and visiting castles and I would love to know more about gardening.

The Volunteers

A team of volunteers give over 1,000 hours a year. They include Sally a former member of staff, Norman and Andrew survivors of encephalitis and Sam and Keith on a supported work placement.

Our Consultants

Derek Searle is the Society’s consultant finance officer, responsible for liaising with the Trustees on the Society’s performance against budget throughout the year and with the Society’s auditors for the preparation of the annual accounts. Derek is a retired University lecturer, a Chartered Accountant with a degree from the LSE. Derek has acted as consultant to a number of smaller companies in North Yorkshire, including five years with the Yorkshire Wildlife Trust. Cricket is a lifelong passion and Derek still plays and coaches. He also plays golf and bridge when possible.

Helen and Andrew are our IT specialists, their company Wingspan is based locally www.wingspan.info . Helen works in the office one day a week and keeps the web site updated. She also provides graphic design for printed materials. Andrew provides maintenance, development and support for our database and the web site. They are both keen tennis players.

The Board of Trustees

Trustees are elected to the Board at the Annual General Meeting. The usual procedure is for prospective Trustees to contact the Society and initially attend Board meetings as observers. Meetings are usually held in York 4 times a year with all reasonable expenses paid, including overnight accommodation. A majority of Board members must have been personally affected by encephalitis either themself, a family member or a friend. Professionals and others with an interest in encephalitis are also welcome to put themselves forward.

Colin Dellar, Chair

I contracted encephalitis when I was 25 but over the years have regained my health and fitness. I come from Cheltenham where I worked before retirement for 37 years as a teacher trainer and chartered psychologist at the University of Gloucestershire. I have been a trustee of the Society now for over seven years, the last three as Acting Chair and Chair. For the last five years I have been raising funds for our company and familiarising our locality with Encephalitis by giving talks on the nature of Psychology, a talk which always includes about ten minutes on encephalitis.

I am married with three children, one just finishing his training as a doctor, one a qualified nurse and one a solicitor. Increasingly they are able to advise me in various ways on matters pertaining to our company. My eldest son, for example, advises me on Charity Matters as this is a major part of his work for a legal firm in London. Increasingly he has involved himself in the work of the society. The other two can translate the medical jargon associated with encephalitis in to comprehensible language for me! I enjoy working for the society and believe that our trustees and staff are working productively together at the moment.

Keith Dowell, Secretary

Born in Leeds, Keith worked 33 years for the railways as an accountant in a variety of posts. He lives in North Yorkshire with wife Elaine and three grown up children. He helped to set up the Encephalitis Support Group after son Andrew contracted encephalitis at the age of seven, initially dealing with the accounts and moving on to Company secretary. Keith is interested in the environment, renewable energy and combating global warming. He has a smallholding and works for the biggest UK conservation charity, BTCV.

Leigh Palmer, Treasurer

I am a Chartered Accountant working in the biotechnology industry. My connection with encephalitis is somewhat indirect in that my wife’s father died from it at the age of 36 - Kim was then 11. Although nearly 40 years ago, his premature death is still with her. She was delighted to discover the Encephalitis Support Group and immediately joined. When the position of Treasurer appeared, I was more than ready to volunteer my services. I have been married to Kim for nearly 30 years. We have two daughters and live in an old farmhouse in north Suffolk. We are all Formula 1 motor racing fanatics.

Martin McLeish, Vice Chair

I live in Welwyn Garden City, just North of London. I was a teacher for 35 years until my wife's illness, at which point I took early retirement to be her carer. Ruth developed a severe Herpes Simplex Encephalitis whilst we were on holiday in North America, in the year 2000. She died in June 2005 of a chest infection that could not be halted, despite two weeks of intensive care in the local hospital. As Ruth's carer, I spent a great deal of time both in hospital, and at home, trying to come to terms with this illness and to gain some understanding of it and its rehabilitation. We joined the Society as soon as Ruth became ill, and I decided at that time to do all I could to help, as the best support we had been given came from the advice and experience of the Society. I also became a member of the Patient and Carer Network of the Royal College of Physicians and Chairman of the Public Involvement Panel of the local PCT. I became a Trustee of the Society at the first opportunity, with the aim of contributing what I could to the understanding of the illness - and to the support of those affected by it.

Tony Eves

As my daughter contracted Herpes simplex encephalitis at the age of three weeks and is now approaching her seventh birthday, I believe that I will be able to bring to the society the view from a parent of a young sufferer, with all the complications it brings. I hope I will be able to help other parents deal with the many obstacles they may encounter. The society has helped our family in many ways and I will be happy to put a little back in if you wish me to.

Dr Stephen Bainbridge, Prospective Trustee

Dr Stephen Bainbridge is a York based Chartered Clinical Psychologist with the British Psychological Society (BPS) and a full member of the Division of Clinical Psychology. In 2005 he completed a piece of qualitative research looking at how parents cope with paediatric encephalitic brain injury. Stephen has considerable experience of working in adult mental health settings within the NHS, providing psychological assessment and treatment to working age adults experiencing psychological and emotional difficulties. At the start of 2007, he entered part-time into private practice.

Nimmi Channa, Prospective Trustee

Nimmi is the parent of a child affected by encephalitis and the author of our storybook for children “Gilley the Giraffe …who changed”.

She is a Chartered Accountant who has continued to work and keep up to date with current practice and regulations. A large part of her career has been in Social Housing so she is familiar with the Charitable and Social sector. She is particular interested in assisting with fundraising and long term planning. “I feel that I could get involved with a charity in which I have a passionate and caring interest. I would like to see the charity progress financially and to be able to give the benefits and rewards to members of the society”.

Professional Advisory Panel

Natasha Crowcroft
Consultant Medical Epidemiologist
Immunisation Dept
HPA Centre for Infections

Dr Nicholas Davies
Specialist Registrar in Neurology
St Mary's Hospital, London

Prof. Clive Hawkins
Professor of Clinical Neurology
Keele University Medical School

Ms Marian Hooson
Clin. Specialist Occupational Therapist
North Wales Brain Injury Service

Prof. Michael Kopelman
Professor of Neuropsychiatry
King’s College, London,
Institute of Psychiatry

Dr Arle ta Starza-Smith,
Director of Clinical Psychology and Neuropsychology,
Nottingham University Hospital NHS Trust

Dr Pamela Vallely
Senior Lecturer in Medical Virology
Virology & Microbiology Unit,
University of Manchester

Prof. Huw Williams
A/ Professor in Clinical Neuropsychology
University of Exeter

Prof. Barbara A Wilson, OBE MRC
Cognition and Brain Sciences Unit,
Cambridge
& The Oliver Zangwill Centre for Neuropsychological Rehabilitation,
Ely