samantha cameron ncype bbc journalist simon cox · 2014-09-05 · samantha cameron helped mark...

SUMMER 2011 // issue 6

Samantha Cameron welcomes NCYPE to Number 10

NCYPE welcomes their new president

BBC journalist Simon Cox interviewed for the launch of the Champions for Childhood Epilepsy DVD

Join in with our fundraising events

Read Olympic athlete, Dai Greene’s interview

www.ncype.org.uk

Better Futures for Young Lives with Epilepsy

www.ncype.org.uk 3


Our Purple Pledge campaign has seen the country turn purple from fountains in London and Birmingham to the town hall clock in Manchester. Launched on International Purple Day, 26 March 2011, the campaign has seen widespread success, encouraging people to make

purple pledges like dyeing their hair purple, or bathing in baths of blackcurrant squash, in a bid to educate the public on epilepsy and its affects on children and young people.

Dai Greene, Welsh hurdler and double winner of the European and Commonwealth Games last year, has become the official ambassador for My Purple Pledge. Living with epilepsy himself, Dai is building a successful career as a world-class athlete, and knows only too well the challenges that epilepsy can present to young people.

National Epilepsy Week (15 – 22 May) saw a whole range of activities and media coverage to help raise awareness of epilepsy. Samantha Cameron hosted a reception at 10 Downing Street for 60 guests including Max Clifford, Nicholas Owen, Sir Bryan Nicholson and our new President Gerry Acher.

This summer has also seen the launch of our new online seizure diary for teenagers with epilepsy and our new training DVD to help the national roll out of our Champions for Childhood Epilepsy Campaign.

May I express a very big thank you to everyone who is supporting us in our work to create better futures for young lives with epilepsy.

Exciting!Message from David Ford, Chief Executive

News

Launch of Champions for Childhood Epilepsy DVD

Celebrity Voice – Dai Greene

A Day in the Life of a NCYPE Education Officer

We want to hear from you! Email [email protected] with your ideas, comments.

Out and About

Join in – Fundraising News

Opening of the Nicholson Hall and Invite to Number 10

James is 21, has epilepsy and mobility issues. He has been at the Further Education College since 2006.

Inside this issue:

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Summer 2011 // issue 6

They were also joined by Max Clifford, Nicholas Owen and Sir Bryan Nicholson, and together helped to increase understanding and support for children and young people living with epilepsy.

Lisa Farmer, Director of Fundraising for the NCYPE, who attended the event, said: “We are grateful to Samantha Cameron for giving us the opportunity to host and attend the event at Number 10. It was a real honour and privilege. She was a wonderful host and an absolute pleasure to meet. The evening was a brilliant success and really helped to raise the profile of epilepsy amongst the UK’s children and young people.”

Samantha Cameron welcomes NCYPE to

Downing Street

A group of students from the NCYPE were welcomed through the door of Number 10 Downing Street on Tuesday, 17 May, as Samantha Cameron helped mark National Epilepsy Week (15 – 22 May) by hosting a reception in our honour.

60 guests were invited to Number 10 to join the reception, including four school and college students, who together presented Samantha Cameron with a piece of ceramic art made by young people at the NCYPE.

Official opening of Nicholson Hall gives cause for celebration

Students, staff and guests came together on 15 June to celebrate the official opening of the Nicholson Main Hall – a state of the art facility that incorporates a new media centre, student performance area, bistro and café. This newly refurbished facility is the result of a £400,000 fundraising drive and has been named in honour of our past President, Sir Bryan Nicholson, who has worked tirelessly to

promote the cause of the NCYPE and helped raise over £7 million during his tenure.

The main hall is home to the ‘Karten CTEC Centre’ which houses the latest media and technical equipment to enable students to access new subjects and develop skills in creative arts, performance arts, journalism, media, film-making and broadcasting. The facility was made possible thanks to a generous donation of £117,000 from

The Ian Karten Charitable Trust.

L-R Lord Howe, Gerry Acher (President), Sir Bryan Nicholson at the opening of the Nicholson Hall. Former Presidents Lord Howe and Sir Bryan Nicholson have been appointed life Vice Presidents of NCYPE.


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The NCYPE’s Champions for Childhood Epilepsy Campaign has launched its brand new training pack for schools which includes a series of DVD lectures covering all aspects of epilepsy and education.

Lots of NCYPE experts, students and School Epilepsy Champions were involved in the production. Simon Cox, investigative reporter and presenter for BBC Radio 4, presented some of the sections for us and in this interview he talks about what he learnt from his involvement with the Champions for Childhood Epilepsy Campaign.

How much did you know about epilepsy before you became involved with the DVD?Not an awful lot, bits and pieces I had picked up over the years. I imagine awareness is pretty low generally, there’s a lot of misinformation and lack of understanding about the condition. People who don’t have experience of epilepsy probably get most of their information from anecdotes and drama.

Launch of DVD training resourceinterview with BBC journalist Simon Cox

What was the thing that surprised you most?The multiple ways epilepsy can affect someone, I had no idea. Learning how it can affect behaviour, emotions and ability to learn. Then the side-effects that the drugs can have so that even when seizures are well controlled this is a condition which can really have an impact on a person’s life.

Before getting involved in this project would you have known what to do if you saw someone having a seizure? I probably would have relied on the basic first aid training that I had many years ago. I think many of us would tend to be fearful about how to deal with someone having a seizure and I’m sure that fear is related to the stigma that is still attached to epilepsy.

Do you think the campaign and this training DVD can make a difference?Anything that can adversely affect children’s health is something that undoubtedly is important for schools to understand. Having a member of staff with knowledge of epilepsy will be really useful and help to improve understanding of epilepsy. It will also help children and young people feel more protected and less different from their peers.

Respected City professional Gerry Acher was appointed President of the NCYPE in March this year.

He takes over from Sir Bryan Nicholson, who has retired

after seven years as President. Gerry Acher will initially spearhead a £10 million fundraising campaign for a new school on the NCYPE’s Surrey campus, to replace the current buildings, some of which are over 100 years old.

New President of NCYPE

Originally from Dublin, John trained as a physiotherapist at the University of Dublin, Trinity College. He has held several clinical posts in the areas of paediatrics, neurology and musculoskeletal. In 1998 he became the

lead research physiotherapist for Gulf War Syndrome with King’s College Hospitals Trust and the Ministry of Defence and became an expert in the measurement of muscle strength. He then went back to clinical physiotherapy within the NHS leading to management roles and his previous role as Director at NHS Havering in North East London where he specialised in Business Development and Performance. He has spent time at Oxford University examining how the charitable sector can add value to the delivery of healthcare.

New Director of Health ServicesJohn Cowman joined the NCYPE on 27 June as the new Director of Health Services.

“Participating in the seminar was a great experience. It also proved that people want to know about our approach to education and that the National Centre for Young People with Epilepsy is a centre of excellence of international standing.”

www.ncype.org.uk

Gerry Acher said, “I am hugely excited at

the potential of the NCYPE to make a real

difference to the lives of the 60,000 young

people with epilepsy, their families and

those who care for them whether through

its health facilities, its school or its

outreach programme.”

East Meets West at Specialist Epilepsy School in Surrey

St Piers School has been twinned with the Residential School for Children with Special Needs No 1 in St Petersburg. The deal will see both establishments sharing resources and expertise, such as their experiences of using non-verbal methods of communication, and creating individual education plans for students. The twinning came about after St Piers teacher, Olya Scott, researched the school’s activities last summer. A visit followed in October 2010 and in April Olya returned at the request of her Russian counterparts and led a professional seminar at the school. Olya said:

News

Go to www.nycpe.org.uk/campaign to order your copy.

Out and about with the NCYPE

Activity WeekJune’s Activity Week saw students from the school taking part in a whole range of activities including

archery, golf, basketball, adapted cycling, canoeing, trampolining, creative arts, dancing, boating, and the Surrey Special Schools Sports Day.

www.ncype.org.uk

Life on the Farm

Student Dino helping out on the

farm feeding the pigs. The farm

shop is open to staff Monday –

Thursday 8.30am - 4.30pm

and Friday 8.30am to 4pm

selling burgers, sausages,

and fresh eggs.

Purple PlodIn April Williams Lower house organised

a 24 hour purple plod in the grounds

of NCYPE to support the Purple Pledge

campaign.

The event raised £3,854

Fun Day 17 June

Celebrations continued after the

opening of the Nicholson Hall with

a Fun Day with performances from

students, afternoon tea, fairground

rides and stalls, live bands and other

entertainment – concluding with a disco

at the end of the night. The stalls on the

green included face-painting, hook the

duck, tombola, bouncy castle and plant

stalls and food stalls including one with

a French theme.

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www.ncype.org.uk


NCYPE receives donation from Surrey Freemasons The Grand Charity Major Grant Scheme Surrey Freemasons presented the NCYPE’s Director of Fundraising with a cheque for £15,000 on Wednesday 29 June 2011.

Lisa Farmer was handed the generous donation by the Surrey Freemason’s Provincial Grand Master, Eric Stuart-Bamford, at an especially held event at their Surbiton based Masonic Centre. It was part of an overall £80,000 award made to a number of charities across the county, with several Surrey lodges having made donations towards the total amount by holding charity garden parties, golf days and other events.

Eric-Stuart Bamford, Provincial Grand Master of Surrey said, “Surrey Freemasons are dedicated to helping local charities and it is appropriate that three Surrey based charities have been selected to receive substantial grants. We will continue to give our support to the local community.”

All Masonic charities are supported by voluntary donations by Freemasons and their friends and families. The Major Grants Scheme is just one of the initiatives driven by The Freemasons’ Grand Charity which donates over £3 million to national charities every year.

‘No strings’ volunteering kicks the A Team into gear!

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: [email protected]. For a full list of events visit www.ncype.org.uk.

Stavros Flatley

pledged his purple support

at the purple coloured fountain in Piccadilly Circus.

JOIN IN Fundraising news

‘Run to the Beat’ Half Marathon Sunday 25 September at The O2 Arena

We have guaranteed places in the only half marathon with live music and exclusive performances to get you to the finish line! Starting and finishing

at The O2 Arena you will be supported along the route by 14 music stations playing carefully selected music to motivate you.

Minimum Sponsorship: £250

NCYPE Lunch at ‘The Clink’ Prison Restaurant Thursday 17 November

Join us for a unique opportunity to dine at the first and only commercial restaurant to be built inside a working British prison. The Clink offers a memorable dining experience, with seasonal food prepared cooked and served by prisoners who are training whilst serving their sentence.

Costs: £40 per ticket which includes a three course lunch and welcome drink. Please Note: This is an extremely popular event therefore to secure your place we recommend booking your tickets as early as possible. Closing date for bookings is 1 September 2011

The NCYPE Golf Classic Tuesday 4 October

This year our Charity Golf Classic has kindly been hosted by the West Byfleet Golf Club which offers a really good challenge for all standards of play. It will be an 18 hole, four ball team event with prizes for 1st, 2nd and 3rd places. Costs: Team of four £360 which includes breakfast and three course dinner

NCYPE’s fundraising programme has gone truly national over the last few months with fundraising groups being formed in Lingfied, Birmingham, Welwyn Garden City, Milton Keynes, Bedford, St Austell, Sandy and Bishops Stortford.

We’re really excited to have these new groups on board, fundraising for us and flying the NCYPE flag in their communities, and are looking forward to seeing even more events planned in these areas. Groups such as this are a great way of raising awareness of epilepsy across the country and we’re always looking for more people to get involved.

If you are interested and would like to hear more, please give us a call on 01342 831245 or email: [email protected] – we’d love to hear from you.

A big welcome to our nine new volunteer fundraising groups!

We know that finding the time to volunteer can be challenging with all the pressures of modern life, so in recognition of this we have developed the Action Team – a volunteering programme designed to fit around the busiest of lifestyles!

As an Action Team member in your community, you will be offered a wide variety of volunteering opportunities, from marshalling at a sports event and taking part in a bucket collection, to selling raffle tickets, or cheering runners in the local marathon! It’s also a great way of meeting new people, making friends and adding that little something extra to your CV. The best thing is, it’s all on your terms!

If you’re interested in signing up, simply email us at [email protected] with the subject Action Team and we’ll do the rest for you.

Cycle London to Paris Wednesday 7 September (5 days)

Cycling from London to Paris is one of the great cycle experiences in Europe. Passing through picturesque Kent countryside, you cross the Channel and continue through the small villages and medieval market towns of Northern France, passing the famous battlefields of the Somme and Agincourt. With long days in the saddle and some strenuous hill-climbs, the sight of the Eiffel Tower will evoke a real sense of achievement.

Costs: £149 Registration Fee, Minimum Sponsorship: £1550

Adidas Women’s 5K Challenge Sunday 11 September

The adidas women’s 5K challenge is a fun run for women of all ages and abilities. It’s the UK’s biggest and best women-only fun run with over 30,000 women taking part last year. Walk, run or jog through London’s beautiful Hyde Park.

Costs: £15 Registration Fee, Minimum Sponsorship: £100

Leeds United

Football Club

pledge purple

for young people

with epilepsy.


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Olympic athlete pledges support to My Purple Pledge In this issue we welcome Welsh hurdler and 2010 Commonwealth Games Champion, Dai Greene. The second fastest man

ever in Britain (over 400m hurdles), and with personal experience of living with epilepsy, Dai is also the new face of our My Purple Pledge campaign. Here he talks to us about his condition, his ambitions for the 2012 Olympics and why he’s pledged his support to the NCYPE.

When were you diagnosed with epilepsy? I was 17 and it was New Years Day. I’d been to a party and the next thing I knew I woke up in hospital. I don’t remember anything about it, but was told I’d had a seizure and this then led to a formal diagnosis. I’d not experienced any symptoms prior to this first episode.

How does it impact your day to day life? I’m lucky that for me it seems to be under control. I am very strict about not drinking and make sure I get a good night’s sleep, both of which are seizure triggers for me. I also try to avoid excessive use of a computer screen when I’m tired. The only time I need to give it extra consideration is when I’m travelling abroad for competitions and I need to plan my flight schedules so it doesn’t interfere with my sleep too much.

Do you think more could be done to raise awareness of the condition? I didn’t personally know too much about the condition until my own diagnosis and

generally I think there is a lack of awareness. I do believe more could be done to make people more aware.

When did you realise your dream was to be an athlete? I had always wanted to be a footballer, but when I was at university doing my sport and leisure management degree, I got in to athletics and it soon went from being a sideline sport to something serious. I had a really successful season and decided to take it up professionally.

You’re going to be taking part in the 2012 Olympics. How do you feel about this? I’m really looking forward to taking part as being able to complete in your home country is really special. For me, being at the peak of my career, it really is superb. I’m busy training really hard and generally train six days a week, with Saturdays off. I’m also taking part in the World Championships later on this year.

Why are you supporting the My Purple Pledge campaign?I’ve been very fortunate and lucky to get where I am. My younger brother has epilepsy as well and was diagnosed around the same age as me, so it’s very relevant to both me and my family. I’m keen to give the 60,000 children and young people living with the condition a voice and want to help raise awareness and support a good cause like My Purple Pledge.

What advice would you offer to other young people about following their dreams while also living with epilepsy? My advice would be, don’t let it hold you back because anything is possible.


about an hour long and jam packed with activities to get them thinking; first about how the brain sends messages all around the body – a practical demonstration with beanbags is a fantastic visual reminder that sometimes the messages get muddled or there is a sudden burst of activity – just like in a seizure. A story is used to help the children think about how it may feel to have epilepsy and how our feelings affect how we behave. After exploring how to keep someone safe so that they can join in activities just like everyone else, the lesson finishes with a fun quiz designed to see how much they have learned.

Before we know it the school day is over and 420 pupils have learned more about epilepsy and head off home with their Epilepsy Education 4 Schools sticker and the challenge to see if they can tell their family about epilepsy. Now it’s the staff teams turn and we deliver up to two hours of more in-depth training on identifying and managing seizures and the wider impact of epilepsy on a child’s learning, behaviour and well-being.

Tomorrow is another day, new names and faces, a different school and a very different challenge – a secondary school in outer London with over a thousand pupils.


Celebrity A Day in the Life of a NCYPE Education Officer

www.ncype.org.uk

For information on the Childhood Epilepsy Study Days and Training Events in Autumn 2011 please visit our website at: www.ncype.org.uk/about-us/events

All our courses are delivered by trained specialists who work at the NCYPE and have many years experience of working with children and young people with epilepsy.

Arriving at a primary school on Sussex’s south coast before school begins, there is just enough time to meet the teacher who has been liaising with us to organise the day long visit before setting up for the day.

At 9am four hundred and twenty pupils, along with their teachers file into the hall. Introduced by the head teacher to the sea of smiling faces, it’s over to us. We start to introduce the theme of the day by thinking about all the different things our brain controls, what seizures are and how we all have a job to do to keep someone with epilepsy safe if they need our help. The 25 minute interactive assembly is over in a flash and it is time to head straight to the reception classroom. Once comfortable on the carpet the children are soon engaged in a story aimed specifically at young children about a boy with epilepsy. Before long we’re all up on our feet and singing a song with lots of actions – all about looking after a friend with epilepsy.

The afternoon Year 4 class has a child with epilepsy. Often they have never talked about their condition with their friends or even their teacher. The key stage two lessons are

Find the NCYPE on facebook (NCYPE) and twitter (@youngepilepsy)

Publication No: 155

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: [email protected]. To make a donation, go online to www.justgiving.com/ncype

Better futures for young lives with epilepsyThe NCYPE, St. Piers Lane, Lingfield, Surrey RH7 6PWTel: 01342 832243 Fax: 01342 834639 Email: [email protected] www.ncype.org.ukRegistered Charity No: 311877 (England and Wales)

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

NCYPE 2011 ©

samantha cameron ncype bbc journalist simon cox · 2014-09-05 · samantha cameron helped mark...

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