youngepilepsy.org.uk

Winter 2011 Issue 7

The new name for NCYPE

Young Epilepsy’s ambassador wins gold!Celebrity interview: Leon LeggeStudents say ahoy there to a new pirate playground!

• 3 Young epilepsy • 4–5 News • 6–7 Celebrity Voice

• 8–9 Join in –Fundraising News • 10 Get involved – volunteers needed

• 11 student artwork creates our logo

There’s news of exciting developments in our medical research work along with the launch of our Christmas Appeal, Reach for the stars – our new logo gives you a clue to the idea behind this campaign.

Professor Helen Cross and Karen Deacon from Young epilepsy were part of a group of Joint epilepsy Council members who met the Prime Minister in October. The Prime Minister agreed to consider Valerie Vaz’s epilepsy Ten Minute Rule Bill (requiring the Government to prepare a strategy to improve education and health services for people with epilepsy) and also raise the issues discussed with the departments for health and education. In a positive meeting he offered to help the Joint epilepsy Council raise the profile of epilepsy and tackle the stigma still associated with the condition

We’d like to say a big thank you to all our supporters and volunteers who help us to make a difference to the lives of children and young people with epilepsy.

On behalf of all of us at Young epilepsy I wish you all a very Happy Christmas and we look forward to working with you in 2012.

Message from David Ford, Chief Executive

Welcome to the first issue of the Voice published under the charity’s new name, Young Epilepsy, as we become a truly national charity.

Over the past three years we have developed a range of new services. These services include our helpline, health information resources, training courses for professionals in health, social care and education and the promotion of good practice in schools. We are now planning to roll these services out across the UK to reach as many of the 112,000 children and young people with epilepsy, and their families, as we can.

Inside this issue

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What’s really great about our new logo is that we have used artwork by students at the school and college to create the logo. There is a main logo but also 8 other versions of coloured stars (see page 11) all created from students’ artwork that we are using on our website and on printed materials. The idea for the star shaped symbol to go with the new name comes from Young epilepsy’s belief that every child is a star.

To coincide with the launch of our new name on 1 November we published research carried out independently by Ipsos MORI on behalf of the charity with parents that have children in school with epilepsy. It raises questions over the support available to families living with the condition. Of those interviewed, only 40% were aware of staff at their child’s school receiving specialist epilepsy training while 51% believe epilepsy has had a “significant” impact on their child’s education, 46% said their children had missed classes while 37% had missed school trips. Bullying was also an issue

with 25% of parents saying their children had been bullied because they have the condition.

The research also found that only 32% of parents were involved with some kind of support group suggesting there is strong demand for Young epilepsy’s services. We are forming an initial 15 parent support groups in the south east which we plan to roll out nationally. The groups will enable parents of children and young people with epilepsy to provide support for each other but also to advocate for improved services in their areas.

On 1 November 2011 we launched our new name, Young Epilepsy. The new name reflects our change into being a truly national charity that supports the 112,000 children and young people with epilepsy aged 25 and under in the UK and their families. We also wanted a name that easily communicates what we are about as a charity, that’s short, easy to recognise and to remember, and that works in the digital world.

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We are actively seeking your help to develop ideas for our parent network service. If you’re interested please email us at info@youngepilepsy.org.uk

News

ethical approval has been granted for the inclusion of Young epilepsy as a study site for two research projects. The projects, which are being carried out in collaboration with Great Ormond street Hospital and uCL – Institute of Neurology, will aim to recruit research participants from Young epilepsy. The projects are both genetics studies and are led by Professor Helen Cross and Professor sanjay sisodiya.

‘epilepsy genomics in childhood: finding the causes, directing treatment’ aims to see whether some children have a genetic predisposition to epilepsy, and whether this is common to certain types of epilepsy. The other project which is titled ‘A genetic basis for response to the ketogenic diet in epilepsy’ will investigate the genetic makeup of patients with epilepsy treated with the ketogenic diet to see whether there is a common link. This will help us understand why some people respond well to the ketogenic diet and others do not.

Dr sarah Aylett is, sadly, leaving Young epilepsy to take up full time clinical commitments at Great Ormond street Hospital. Dr Aylett has held a joint post over the last 15 years as a consultant paediatric neurologist at the NCYPe (now Young epilepsy) and Great Ormond street Hospital and an Honorary senior Lecturer at uCL – Institute of Child Health. she has been very instrumental in developing the Assessment unit and served as the clinical lead for the Medical Centre. Dr Aylett’s vision, dedication and commitment to delivering a high standard of care is greatly admired not only by her colleagues but also by the parents and students. Her knowledge and expertise in paediatric epilepsy has been invaluable to the team and she will continue to collaborate with the charity on existing and new research projects.

We would like to thank Dr Aylett for the fantastic work she has done for the organisation and wish her all the best in her new role.

Sarah Aylett is leaving

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Genetics Research at Young Epilepsy

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Research DonationYoung epilepsy has received a donation of £55,000 towards the setting up of a new research project titled “sleep and memory in children with focal epilepsy.” This project, which will be led by Professor Helen Cross, aims to investigate the role of sleep in memory consolidation and determine whether this is disrupted in children with different types of focal epilepsy, compared to a control population.

Research DonationYoung epilepsy has received a donation of £55,000 towards the setting up of a new research project titled “sleep and memory in children with focal epilepsy.” This project, which will be led by Professor Helen Cross, aims to investigate the role of sleep in memory consolidation and determine whether this is disrupted in children with different types of focal epilepsy, compared to a control population.

Award for Siblings StudyThe Research Team has successfully completed a study investigating the effect of childhood epilepsy on the quality of life of siblings. This project was carried out by sanam Memon, a final year medical student at Aberdeen university under the supervision of Dr Krishna Das, consultant paediatric neurologist at Young epilepsy. sanam was awarded The Association of Physicians elective Prize, which is awarded to a student who submits a project that has achieved a high standard of excellence.

New Director of National ServicesJosh Coleman joined Young epilepsy in August and is here for a year as Interim Director of National services which is a new post. He will develop a detailed business plan that will enable us to take forward and expand our information and training services, our work in schools and explore other options. Josh has an extensive experience in the Further education sector, Higher education sector and the charity sector. He also has substantial experience in developing services for young people including those with special needs.

Dai Greene, Welsh 400m hurdler and official ambassador for the charity’s My Purple Pledge campaign, won the first gold medal for Britain at the IAAF World Championships in Daegu, south Korea. He finished the race in 48.26 seconds.

Young Epilepsy’s Purple Pledge ambassador wins gold!

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Award for Siblings StudyThe Research Team has successfully completed a study investigating the effect of childhood epilepsy on the quality of life of siblings. This project was carried out by sanam Memon, a final year medical student at Aberdeen university under the supervision of Dr Krishna Das, consultant paediatric neurologist at Young epilepsy. sanam was awarded The Association of Physicians elective Prize, which is awarded to a student who submits a project that has achieved a high standard of excellence.

New Director of National ServicesJosh Coleman joined Young epilepsy in August and is here for a year as Interim Director of National services which is a new post. He will develop a detailed business plan that will enable us to take forward and expand our information and training services, our work in schools and explore other options. Josh has an extensive experience in the Further education sector, Higher education sector and the charity sector. He also has substantial experience in developing services for young people including those with special needs.

Dai Greene, Welsh 400m hurdler and official ambassador for the charity’s My Purple Pledge campaign, won the first gold medal for Britain at the IAAF World Championships in Daegu, south Korea. He finished the race in 48.26 seconds.

Celebrity Interview

LEON LEGGE

When were you first diagnosed with epilepsy? I was 16. I had been in a training session at football on a floodlit pitch and I headed the ball and as I came back down everything just went blank. They sent me to hospital to be monitored for the night, but discharged me. A few weeks later it happened again, so I was sent to hospital to be assessed for a week. shortly afterwards I was referred to a neurologist and diagnosed with epilepsy.

How did it affect your life at the time? I didn’t know anything about it so wasn’t aware of what I could and couldn’t do. I was concerned that it would impact my football, but the main thing was that I wasn’t allowed to drive until I was 21. I had to be free from seizures for a year until I could start my lessons. Other than that I just got on with things and didn’t let it get in the way of what I was doing.

How did your family and friends take the news? They were surprised, but were really supportive. My mum always stayed with me at the hospital.

Was there enough support? No, not really. I was given a few leaflets at hospital but that’s it. even now I don’t think there is enough information and I would definitely like to see more awareness.

What made you to decide to back My Purple Pledge? I wanted to support a children’s charity and, because of having epilepsy myself, supporting Young epilepsy really means something to me and I definitely want to help get more information and support out there.

Are you planning to do anything purple next year? Yes definitely. Not sure what yet, but would like to help raise some money.

When did you realise you wanted to be a footballer? I wanted to be a footballer ever since I was a child. Brentford came out of the blue. I signed on my birthday which was a nice birthday present.

What other career options did you consider? I didn’t sign until I was 24, which is considered to be quite late. By this time I was looking at other options and was working with adults with learning disabilities, which I really enjoyed doing. I think I would have continued with that if the football hadn’t taken off.

What’s the next year and football season got in store for you? Hopefully getting high up in the league and getting into the play offs and possible promotion.

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Central defender for Brentford United FC (aged 26)

Photograph ©Mark D Fuller / obfcp.co.uk

When were you first diagnosed with epilepsy? I was 16. I had been in a training session at football on a floodlit pitch and I headed the ball and as I came back down everything just went blank. They sent me to hospital to be monitored for the night, but discharged me. A few weeks later it happened again, so I was sent to hospital to be assessed for a week. shortly afterwards I was referred to a neurologist and diagnosed with epilepsy.

How did it affect your life at the time? I didn’t know anything about it so wasn’t aware of what I could and couldn’t do. I was concerned that it would impact my football, but the main thing was that I wasn’t allowed to drive until I was 21. I had to be free from seizures for a year until I could start my lessons. Other than that I just got on with things and didn’t let it get in the way of what I was doing.

How did your family and friends take the news? They were surprised, but were really supportive. My mum always stayed with me at the hospital.

Was there enough support? No, not really. I was given a few leaflets at hospital but that’s it. even now I don’t think there is enough information and I would definitely like to see more awareness.

What made you to decide to back My Purple Pledge? I wanted to support a children’s charity and, because of having epilepsy myself, supporting Young epilepsy really means something to me and I definitely want to help get more information and support out there.

Are you planning to do anything purple next year? Yes definitely. Not sure what yet, but would like to help raise some money.

When did you realise you wanted to be a footballer? I wanted to be a footballer ever since I was a child. Brentford came out of the blue. I signed on my birthday which was a nice birthday present.

What other career options did you consider? I didn’t sign until I was 24, which is considered to be quite late. By this time I was looking at other options and was working with adults with learning disabilities, which I really enjoyed doing. I think I would have continued with that if the football hadn’t taken off.

What’s the next year and football season got in store for you? Hopefully getting high up in the league and getting into the play offs and possible promotion.

The Prime Minister met with Valerie Vaz MP for Walsall south, Laura sandys MP for south Thanet, Professor Helen Cross and a party from the Joint epilepsy Council to discuss the shortcomings in health and education services for people with epilepsy.

The Prime Minister agreed to consider Valerie Vaz’s epilepsy Ten Minute Rule Bill and also raise the issues discussed with the departments for health and education. In a positive meeting he offered to help the Joint epilepsy Council raise the profile of epilepsy and tackle the stigma still associated with the condition.

Valerie Vaz has introduced a Parliamentary Bill requiring the Government to prepare a strategy to improve education and health services for people with epilepsy.

Professor Helen Cross, The Prince of Wales’s Chair of Childhood epilepsy at Young epilepsy, university College London – Institute of Child Health, and Great Ormond street Hospital Trust said:

“I was very encouraged by the Prime Minister’s plans to look at the needs of children with epilepsy.”

Prime Minister meets Young Epilepsy’s Professor Helen Cross and Karen Deacon and agrees to raise the profile of epilepsy

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Photograph ©Mark D Fuller / obfcp.co.uk

Number 10Downing Street

... is a Commonwealth, european and World Champion 400 metre hurdler. Dai was diagnosed with epilepsy at 17.

“I didn’t know too much about epilepsy until my own diagnosis. I think there is a lack of general understanding about epilepsy and believe more could be done in terms of education, in order to make people more aware of the condition.

“Young epilepsy does important work to help children and young people and so I’m delighted to support the charity and show that with the right support, epilepsy does not have to be a barrier to success.”

Dai Greene at launch of our new name and change to a national charity

Young Epilepsy Ambassador Dai Greene...

Our students have recently welcomed a new pirate adventure playground thanks to grants from the Big Lottery Fund, Next Plc and Gatwick Hilton. The pirate ship includes an area for active play, with slides, nets, and sliding poles. There is also a quiet area with calming equipment including a large glockenspiel and rain wheel for sensory play. The pirate ship theme was chosen by the students and has been designed to meet their varying complex needs.

Musician honours son with fundraising efforts

Fundraising newsyoungepilepsy.org.uk

Join in!

Students say ahoy there to a new pirate playground

Broadstairs musician Jeff Barker from the Jeff Barker Band has handed Young epilepsy a cheque for over £6,000 in memory of his stepson, Lloyd Barker.

Jeff and his band mates embarked on their fundraising quest for the charity to honour 22 year old Lloyd,

who was diagnosed with epilepsy following a serious assault. so far they have raised money through the sale of a special Lloyd Bear, as well as hosting a Lloyd Barker charity gig with live entertainment from the Jeff Barker Band.

Jeff Barker said: “ Our fundraising is in honour of Lloyd’s memory and to help Young epilepsy support the many young people in the uK who are living with epilepsy.”

Christmas cards and Christmas

Prize Draw

If you are planning to send Christmas cards this year then look no further. We have put together an exciting new collection of designs for 2011, with something to suit the tastes of everyone. As well as our new selection of cards, we are very pleased to be holding our annual Christmas Prize Draw. This year the winner will be treated to an overnight stay at any Malmaison or Hotel du Vin, a three course dinner and the use of a BMW for the entire weekend. Other great prizes include £200 of Next vouchers.

Tickets cost just £3 and can be purchased with your Christmas cards by completing the order form on the back of the brochure.To purchase your Christmas cards, or Christmas Prize Draw ticket, call Fundraising on 01342 831245.

Christmas cards and Christmas

Prize Draw

If you are planning to send Christmas cards this year then look no further. We have put together an exciting new collection of designs for 2011, with something to suit the tastes of everyone. As well as our new selection of cards, we are very pleased to be holding our annual Christmas Prize Draw. This year the winner will be treated to an overnight stay at any Malmaison or Hotel du Vin, a three course dinner and the use of a BMW for the entire weekend. Other great prizes include £200 of Next vouchers.

Tickets cost just £3 and can be purchased with your Christmas cards by completing the order form on the back of the brochure.To purchase your Christmas cards, or Christmas Prize Draw ticket, call Fundraising on 01342 831245.

Help children with epilepsy reach for the stars this Christmas!

Young epilepsy has launched its ‘reach for the stars’ Christmas campaign. With the help of Britain’s Got Talent dance sensation, stavros Flatley, we are inviting the public to purchase a special star designed by our students to adorn the Christmas tree at the centre of the campus. With a minimum donation of £6 per star, money raised will help us to enrich the lives of the children and young people at the heart of the campus. supporters will be sent a special

stavros Flatley signed gift certificate in return for their donation.

For more information on our Christmas Appeal please

call 01342 831245 or go online to www.youngepilepsy.org.uk/christmas

New coach is ray of sunshine for Young Epilepsy studentsstudents from st Piers school were presented with a Variety Club Golf society sunshine Coach at a ceremony held at the Kingswood Golf Club in Tadworth on Wednesday, 27 July. The specially designed 17-seater minibus, which has been sponsored by the Variety Club’s Golf society, will be used to transport students to off campus education and recreational activities. The brand new sunshine Coach was donated through money raised by The Variety Club Children’s Charity and fundraising efforts by Young epilepsy’s pupils, staff and parents.

The Children’s IsA has pledged its support to Young epilepsy by becoming the main sponsor of My Purple Pledge 2012.

The My Purple Pledge campaign aims to turn the country purple and raise vital funds. It will go live in March around International Purple Day on 26 March and will be encouraging individuals and companies to get involved and pledge purple.

Mark Albinson, Director of the brand new Children’s IsA, said : “We are delighted to be supporting the work of Young epilepsy, which provides better futures to young lives with epilepsy and fits with the core values of our new Children’s IsA. We aim to help children across the uK with cost effective savings schemes to support them in the future lives.

We are looking forward to getting involved with My Purple Pledge 2012 and helping to raise as much money as possible.”

For more information on The Children’s IsA log onto www.thechildrensisa.com

If you are interested in fundraising and would like to hear more, please give us a call on 01342 831245 or email: fundraising@youngepilepsy.org.uk. To make a donation, go online to www.justgiving.com/youngepilepsy

Fundraising news9

Purple Pledge 2012New coach is ray of sunshine for Young Epilepsy studentsstudents from st Piers school were presented with a Variety Club Golf society sunshine Coach at a ceremony held at the Kingswood Golf Club in Tadworth on Wednesday, 27 July. The specially designed 17-seater minibus, which has been sponsored by the Variety Club’s Golf society, will be used to transport students to off campus education and recreational activities. The brand new sunshine Coach was donated through money raised by The Variety Club Children’s Charity and fundraising efforts by Young epilepsy’s pupils, staff and parents.

The Children’s IsA has pledged its support to Young epilepsy by becoming the main sponsor of My Purple Pledge 2012.

The My Purple Pledge campaign aims to turn the country purple and raise vital funds. It will go live in March around International Purple Day on 26 March and will be encouraging individuals and companies to get involved and pledge purple.

Mark Albinson, Director of the brand new Children’s IsA, said : “We are delighted to be supporting the work of Young epilepsy, which provides better futures to young lives with epilepsy and fits with the core values of our new Children’s IsA. We aim to help children across the uK with cost effective savings schemes to support them in the future lives.

We are looking forward to getting involved with My Purple Pledge 2012 and helping to raise as much money as possible.”

For more information on The Children’s IsA log onto www.thechildrensisa.com

If you are interested in fundraising and would like to hear more, please give us a call on 01342 831245 or email: fundraising@youngepilepsy.org.uk. To make a donation, go online to www.justgiving.com/youngepilepsy

Help children with epilepsy reach for the stars this Christmas!

Young epilepsy has launched its ‘reach for the stars’ Christmas campaign. With the help of Britain’s Got Talent dance sensation, stavros Flatley, we are inviting the public to purchase a special star designed by our students to adorn the Christmas tree at the centre of the campus. With a minimum donation of £6 per star, money raised will help us to enrich the lives of the children and young people at the heart of the campus. supporters will be sent a special

stavros Flatley signed gift certificate in return for their donation.

For more information on our Christmas Appeal please

call 01342 831245 or go online to www.youngepilepsy.org.uk/christmas

Get involved – volunteers needed

Help us build up a stock of delegate packs for training days for just a half day a week. This simple but essential activity takes time which we could use elsewhere.

Training Day SupportCould you help us for about six days a year? You would go with our trainers to set up, take the register, organise refreshments and generally assist with the smooth running of a training day. some events include an overnight stay (expenses paid) although we could ensure you only work on events in your area if you prefer.

If you can help with either of these activities, please be in touch on; 01342 831340 or email campaign@youngepilepsy.org.uk.

Help raise funds this Christmas for children with epilepsy The fundraising department is looking to recruit volunteers to help it maximise fundraising opportunities throughout the Christmas period. From painting faces at santa’s Grotto, to helping to sell stars for our ‘reach for the stars’ campaign, there’s a role for everyone. If you would like to get involved we would love to hear from you. Please email: fundraising@youngepilepsy.org.uk or call 01342 831245.

Help us raise awareness of epilepsy in schoolsThe Champions for Childhood epilepsy Campaign is so busy, we need your help even if you only have a small amount of time to offer.

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Garden Awards winnersGarden Awards winners

We have over 50 stars all created from artwork by the students at St Piers School and St Piers College. Here are the first 8 that we are using as part of the launch of our new name and logo.

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Better futures for young lives with epilepsyYoung epilepsy

st. Piers Lane, Lingfield, surrey RH7 6PW

T 01342 832243 F 01342 834639 e info@youngepilepsy.org.uk youngepilepsy.org.ukYoung epilepsy is the operating name of The National Centre for Young People with epilepsy. Registered Charity No: 311877 (england and Wales)

We need your help and are asking you to buy a Christmas star for a minimum donation of £6.

Pick your favourite star and it will be hung on the tree at the centre of our campus for all students to enjoy. You will receive a special certificate in recognition of your support, signed by Britain’s Got Talent dance sensation, stavros Flatley.

Purchasing a star couldn’t be easier, call 01342 831245, or text: STAR33 to 70070 with the amount you wish to donate (i.e. sTAR33 £6).* see the leaflet or visit our website for more details.

Be a star this Christmas

* People making donations via text giving will not receive a gift certificate.

If you are interested in getting involved with fundraising and would like to hear more,

please give us a call on 01342 831245 or email: fundraising@youngepilepsy.org.uk

To make a donation, go online to www.justgiving.com/youngepilepsy

Publication No: 171

Our thanks go to ACH for their generous sponsorship of this issue of the Voice.