youngepilepsy.org.uk

Celebrity ambassador special

Get ready for Purple Day!

Join us at Glyndebourne

New support for parents and carers

Plus much more!

Spring 2012 Issue 8

• 3–5 News • 6–7 Get involved • 8–9 My Purple Pledge • 10 Tell us your story

• 11 Join us at Glyndebourne • 12 The last word

epilepsy is a condition which affects 112,000 young people under 25 and I am one of them. 2012 is going to be a big year for both me and Young epilepsy, and I am proud to be helping the charity reach its goal of creating better futures for young lives with epilepsy.

There’s so much going on at Young epilepsy and My Purple Pledge is something everyone at the charity is looking forward to getting involved with. More information about this great campaign can be found on pages eight and nine. There are lots of other ways that you can get involved to help make a big difference to young lives. Read on to find out more.

Inside this issue

youngepilepsy.org.uk

I’m Dai Greene and I’m delighted to be guest editing this issue of the voice.

Don’t forget, you can keep up with all the latest goings on by following us on Twitter, Facebook and YouTube.

Here’s to a great 2012.

Dai

Welcome to the voice

It is such an honour to be a Young Epilepsy Ambassador and to support its My Purple Pledge fundraising campaign.

Wherever you see this symbol you can find out more on our website youngepilepsy.org.uk

Videos are available on our site wherever you see this symbol

NEWIN THIS

ISSUE!

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Young Epilepsy President receives Knighthood

Parliament debates SUDEP

sir Gerald was given the award in recognition of the work he has done with charities. He has worked on a number of projects at Young epilepsy but is primarily involved in fundraising to improve the charity’s education services.

Young epilepsy Chief executive David Ford said: “everyone at Young epilepsy is delighted that sir Gerald’s charitable work has gained the recognition it deserves. sir Gerald has done great work raising funds for us and also raising awareness of the condition. sir Gerald is a real asset to Young epilepsy and we very much look forward to continuing our work with him.”

Birmingham MP Steve McCabe raised awareness of Sudden Unexpected Death in Epilepsy (SUDEP) through a parliamentary debate.

During the recent debate at Westminster, MPs considered the number of people who die each year as a result of suDeP. Following the debate, Young epilepsy called for action to prevent avoidable deaths caused by epilepsy. David Ford commented that, “epilepsy is a misunderstood condition and few people realise it can prove fatal. It was a major step for steve McCabe MP to arrange for epilepsy to be discussed in Parliament and we hope to see the momentum continue and for more Parliamentarians to show an interest in the condition.”

More information about SUDEP is on the media section of our website youngepilepsy.org.uk

Young Epilepsy has congratulated its President Sir Gerald Acher on receiving the Knights Bachelor in the New Year Honours List 2012.

News

Young Epilepsy helps reverse decision on Disability Living AllowanceWe’re pleased to announce that disabled people living in residential care homes and colleges will continue to have their additional mobility needs met through Disability Living Allowance (DLA) and the Personal Independence Payment (PIP).

This reverses a previous Government decision which was challenged by a variety of individuals and organisations, including Young epilepsy’s President, sir Gerald Acher. sir Gerald used his knowledge of students at st Piers school and College to argue against the Government’s proposal.

News from HQyoungepilepsy.org.uk

Young Epilepsy celebrates diversityWe are delighted to have appointed John Cowman, Director of Health, as Young epilepsy’s equality and Diversity (e&D) Champion.

Find out what this means for Young Epilepsy »

2012

Come and see us!We’re running open days throughout 2012 for anyone interested in st Piers school and College, which specialise in teaching children and young people with epilepsy, autism and other neurological conditions.

Check out the latest dates »

Don’t forget!By signing up to our e-newsletter you can receive our latest news straight to you inbox. Alternatively, stay in touch by ‘liking’ us on Facebook,following us on Twitter or subscribing to our channel on YouTube.

Footballer’s surprise visit

Brentford United FC defender Leon Legge gave us a very pleasant surprise when he made an unexpected visit to our headquarters recently.

Find out what happened »

There is so much going on at our Young

Epilepsy headquarters that we can’t fit it all on the page! So instead here is just a taster of all our latest news – full details of which you can find on our

website youngepilepsy.org.uk

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Sainsbury’s support makes a big difference

Procter & Gamble (P&G) donate £6,000

St Piers School and College

A generous donation from Procter and Gamble has enabled us to fund a number of exciting projects.

Find out how their money makes a difference to young people with epilepsy »

Ofsted reports that St Piers Sure Start Children’s Centre is ‘GOOD’

We’re pleased to announce that sainsbury’s Central Retail Division has chosen Young epilepsy as its charity of the year. Find out how they are planning to raise £10,000 for the charity »

We’re delighted to announce that St Piers Sure Start Children’s Centre received a ‘good’ overall rating following its first ever Ofsted inspection.

Find out what centre leader, Karen Pallot, had to say about the report »

Our students have been busy bees recently. Check out the student life blog for all the latest happenings »

Come and see us!

youngepilepsy.org.uk

Get involved

To volunteer for Young Epilepsy or to find out more about our challenges, please email fundraising@youngepilepsy.org.uk

Challenge yourself to make a difference

Have you ever wanted to visit far-away places or see just how far you can physically push yourself? If so then we have a range of exciting challenges to tempt you away from your sofa in 2012! From cycling the famous 1,000 miles from Lands end to the furthest north in the British Isles, to trekking through the Peruvian jungle to the breathtaking Machu Picchu. For those who want to really go for it, how about a trek to the largest volcano in the world...the mighty Mount Kilimanjaro – could you reach the summit? Find out more about our exciting overseas challenges and make 2012 the year you did something truly amazing.

Volunteer with Young Epilepsy

We are looking for volunteers to join our Action Teams across the UK. Action Teams are groups of local people who simply don’t have the regular time to commit, however would like the opportunity to volunteer in their own community as and when it suits them – no strings attached!

Hello Birmingham!

Young epilepsy Fundraiser Lucy Cooper is now working from

Birmingham to promote our work and build support from local companies and communities across the Midlands.

If you live or work in the area and want to get more involved, you can contact Lucy by e-mailing lcooper@youngepilepsy.org.uk. she would love to hear from you!

Whatever your background and however much time you can spare, you’ll find that volunteering for Young Epilepsy is rewarding and fun. It’s also a great way to develop your skills and meet new and interesting people.

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Additional support for parents and carersDo you sometimes find it tough caring for a child or young person with epilepsy? Might you find it useful to speak, or meet, with parents, carers or others in a similar position to share your experiences? If so, then why not join one of our new support groups or consider setting one up yourself?

If you want to know more about our support groups or are interested in setting one up then please email supportnetwork@youngepilepsy.org.uk

Do you want to fundraise for Young Epilepsy and support our work? If so then why not visit our website for more ideas or call our Fundraising Team for a chat on 01342 831245 or email fundraising@youngepilepsy.org.uk »

Focus on fundraising

Birmingham Group Our Birmingham Group organised a fantastic

fair and raised over £250 for Young epilepsy. The fair included many different stalls and over 100 people visited. It was such a success the fair will be returning for Christmas 2012!

Abertay University Rebecca Roper who is President of the

siobhan Anne Luckett Drama society at Abertay university recently organised a drama production to raise funds for Young epilepsy. Rebecca and her team of volunteers sang carols in the local town and organised a fair where they sold many items in aid of Young epilepsy!

Sandy Group Jean Bennett opened up her house once

again and organised a “Bring & Buy sale” in aid of Young epilepsy. Jean raised over £300 and helped raise awareness of the charity in an area where we are not well known. Jean also recruited a number of volunteers on the day to join her fundraising group.

Need some help?If you need help or information about epilepsy and young people, then please get in touch with our Helpline by calling

01342 831342 (Mon – Fri 9am – 1pm)

or by email helpline@youngepilepsy.org.uk

Our experienced staff will be happy to help.

We also run a variety of training courses across the uK. Courses are tailored for medical and social care professionals, education professionals, as well as parents and carers, and we can also provide emergency medication training and bespoke training.More information is on the Training pages of our website »

youngepilepsy.org.uk

We are launching our My Purple Pledge campaign to celebrate Purple Day. Why not get involved and make a difference?

My Purple Pledge is our purple-tastic fundraising campaign which aims to put the ‘fun’ back into fundraising, and change the lives of the 112,000 young people affected by epilepsy. It coincides with Purple Day on 26 March – the international day to mark epilepsy awareness which is backed by a series of famous faces including our own Ambassador, champion 400m hurdler Dai Greene (more on page 12).

If organising isn’t your thing, why not get Zumba fit in the name of My Purple Pledge? We’re hosting purple Zumba events across the uK on Purple Day.

For details including locations and how to register, go to mypurplepledge.com

Get ready for Purple Day!

We’re proud to have The Children’s ISA as My Purple Pledge’s main sponsor. We’re delighted to announce that any profit made by people taking out a Children’s IsA by 6 April 2012 will be donated directly to My Purple Pledge.

The Children’s IsA is a junior IsA which offers tax efficient savings for a child or grandchild’s future – an option to consider if you are saving for when they grow up. To find out more or

make an online application, visit thechildrensisa.com. You can also find them at Facebook.com/ChildrensISA of follow them on twitter @childISAs

We’re also delighted to introduce My Purple Pledge’s first commercial partner, Easylink UK. easylink has over 25 years experience producing monitors that detect overnight tonic / clonic seizures.

They are happy to offer guidance and advice on their products via their helpline on 01536 264869.

Meet our purple partners

Keep in touchYou can keep up to date with all out latest news by following us on Twitter (@purplepledge) and Facebook Facebook.com/youngepilepsy. We would love to know your purple plans!

Join a Zumbathon

How to sign upTo register for My Purple Pledge in 2012, call Fundraising on 01342 831245 or email us at fundraising@youngepilepsy.org.uk

or visit mypurplepledge.com

How to make your pledgeONLINe mypurplepledge.com BY POsT Please send cheques to us at: My Purple Pledge, Fundraising, Young Epilepsy, St. Piers Lane, Lingfield, Surrey RH7 6PWPHONe 01342 831245

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My Purple Pledge. The Hendy Group can help with your motability allowance by getting the correct vehicle for you. The company has 20 premises across southern england and provides a range of new and used vehicles. For more information on how they can help with this get in touch by going to hendy.co.uk

Products can be provided on a trial basis to assess suitability. easylink uK has committed to helping us by donating £5 for every unit sold between now and April 2012.

We’re very pleased to announce that motor retailer The Hendy Group has also sponsored

Some ideas to get you started

Host a purple-tastic tea party

Hold a purple themed pub quiz

Throw a purple fashion show

Host a purple inspired dinner party

Find out what pledges our celebrity supporters have made for My Purple Pledge – mypurplepledge.com

Got a purple idea?Pledges could range from wearing purple to work or school, baking and selling purple cakes, or even being sponsored to lie in a bath of blackcurrant juice! Anything goes and the quirkier the better. Do you need inspiration? No problem! You can Download a FRee toolkit from mypurplepledge.com

youngepilepsy.org.uk

You’re in good companyYoung epilepsy Ambassadors Dai Greene, footballer Leon Legge, actor Philip Martin Brown (pictured above) and other high-profile figures such as susan Boyle and edith Bowman, who have all bravely spoken out about their epilepsy, are a real inspiration. They show that it is possible to live life to the full despite the challenges that living with epilepsy can present. Their stories also help to demonstrate that the impact of epilepsy can vary enormously from person to person – a useful and encouraging message. But you don’t need to be a celebrity to be an inspiration: you might be a manager, a mother, a motivational speaker or a marketing executive. Whatever your life looks like, if you’re living with epilepsy, we’d like to hear about it!

Get in touch?For more information and to tell your story visit youngepilepsy.org.uk, or, for an initial chat, call our Media Office on 01342 831310

Tell us your storyEvery person affected by epilepsy has a unique story to tell. We want to hear from you!sharing individual stories of the impact of epilepsy is a powerful way to raise awareness and challenge perceptions; it also influences the way we work as a charity. This, in turn, helps us ensure that everything we do is of real benefit to the 112,000 young people living with epilepsy in the uK.

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Join us at GlyndebourneHow to book

To book tickets, visit glyndebourne.com or call the box office on 01273 813813. Glyndebourne also run a live chat service from 10am to 6pm Monday to Friday to help with any queries about your visit at glyndebourne.com/live-chat

Enjoy an afternoon of words and music with:

Ian Bostridge CBe

Jason Carr

sarah Connolly CBe

Danielle de Niese

Gerald Finley

Dame Felicity Lott

Joanna Lumley OBe

Diana Montague

Paul Nilon

Brindley sherratt

Timothy West CBe

On Sunday 29 April, Glyndebourne will be hosting a very special production on behalf of Young Epilepsy.

‘From Handel to Hammerstein’ is a celebration of words and music from a wonderful cast of international stars of opera and stage. exclusive appearances from Glyndebourne’s Music Director Vladimir Jurowski and General Director David Pickard, along with other surprise guests, will add to the excitement of this special occasion.

The show runs from 3.00pm to 5.30pm, including an interval. Tickets cost from £15- £85. Glyndebourne is also offering a limited number of exclusive Premier Seat Packages costing £175 each. This includes a souvenir programme, interval Champagne and a post-performance reception with the cast. When booking, please note that these seats are in the central stalls.

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)

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: 203

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

We caught up with Young Epilepsy ambassador Dai Greene as he arrived “fashionably late” for the recent BBC Sports Personality of the Year Awards.

Having been diagnosed with epilepsy at the age of 17, Young epilepsy is a cause close to Dai’s heart. It’s why Dai became an Ambassador for the charity and why he backs our annual My Purple Pledge fundraising campaign.

Commenting on My Purple Pledge, Dai said: “My Purple Pledge aims to put epilepsy on the map and make people aware of what it really means. I’m fully behind the campaign and will be pledging purple to help improve the lives of a lot of young people with epilepsy. I’m hoping that as many people as possible will be ‘in the purple’ on 26 March and help raise desperately needed funds for such a deserving cause.”

Dai hasn’t let epilepsy get in the way of his career as a 400m hurdler and 2011 was a particularly big year for him. Dai ran a brilliant race to win Britain’s first gold medal of the World Championships in south Korea in september, adding the world crown to his european and Commonwealth titles. But even this did not prepare him for the honour of being shortlisted for the BBC sports Personality of the Year Award.

“When I won my World Championships Gold, I didn’t think I’d be on the shortlist. It’s a fantastic feeling,” Dai said.

Dai also had a message for everyone involved with Young epilepsy. He offered “a big thank you” to everyone at the charity and said: “I’ve been working with Young Epilepsy for a little while now and it is fantastic that you are supporting me.”

Dai didn’t win the award but said he felt the main aim of the ceremony was to celebrate sporting success. “It’s great to be recognised as one of top ten and to have my sporting achievements looked at as something significant,” Dai said.

This year, the BBC sports Personality of the Year Award went to road racing cycling champion Mark Cavendish in a public telephone vote. The other nominees, along with Dai, were Darren Clarke, Alastair Cook, Luke Donald, Mo Farrah, Amir Khan, Rory McIlroy, Andy Murray and Andrew strauss.

And what of the future? Dai kindly offered Young epilepsy a special message: “Good luck to everyone for 2012. I hope it brings you everything you want – and that it brings me an Olympic Gold!”

You can also look forward to watching Dai in a special edition of The Cube game show on ITV1. Dai’s just recorded the show with Philip schofield and the prize will be donated to Young epilepsy. We’ll announce the broadcast date on our website and Facebook page just as soon as it has been confirmed. Watch more of Dai’s interview on our website »

A special day for Dai