...we’ll be withhim for the wholeof his lifeShine supports over 9000 people with spina bifidaand hydrocephalus, and their families, acrossEngland, Wales and Northern Ireland.

Denny was bornwith a hole in hisback...

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First steps ... or first wheels ...

We strive to helpour membersgain whateverthey need toimprove theirmobility, whetherit be exercise,equipment,training or treatment.

And all the years beyond ...Whilst some services fade away when a disabled child reachesadulthood, Shine offers lifelong support.

At every stage of life, Shine has a role to play...Shine supports over 9000 people with spina bifida and hydrocephalus, and their families,

across England, Wales and Northern Ireland.

It is our aim to offer an exceptional level of support as we seek to challenge issues that ourmembers have to overcome. Our approach is to realise these goals by creatively enablingmembers, staff, and supporters to engage with our purpose in as many different ways as possible.

Campaigning

Shine’s Go Folic! campaign alerts women totake extra folic acid BEFORE they conceive tohelp prevent spina bifida.

Pregnancy screening

We support parentswhose unborn child is

diagnosed with spina bifida and work withpolicy-makers to improve care.

Birth

‘My Shine Supportand DevelopmentWorker has been aconstant tower ofstrength since dayone. She was therewhen my daughterwas born and shecame to be with uswhen her shuntwas fitted.’

School and college

Shine’s Education Advisers help ensurethat the effects hydrocephalus can have onmemory, concentration and behaviour arerecognised so that they don’t stop childrenachieving their potential.

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1

This issue kindly

supported by

1

This issue kindlysupported by

Every donation helps, no matter how small ...The charity relies on voluntary donations, sponsorship, and its owntrading company to fund all its services.

Shine has always been there forme, to support me and help meShine has over 90 staff across England, Wales and Northern Ireland and more than

20 local affiliate associations.

Our skilled Support and Development Workers provide specialist support to families and also offertheir comprehensive knowledge and experience to professional health and social care staff.

‘People can’tbelieve howpassionate I getabout my work onbladders andbowels. I believeeveryone has theright to the supportto get clean anddry.’Gill Yaz,

Health Development

Manager

Shine’s magazine, website and busy‘first-contact’ centre ensure a constantflow of information to and from ourmembers. We also facilitate groups andorganise events throughout the year.

Shine uses partnerships to influencepolicy, improve services and advanceresearch.

Above: Shine’s members are involved

in policy-making at every level.

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Born with spina bifida ...

Every day in the UK, at least two of the babies conceived will develop Neural Tube Defects

(NTDs) like spina bifida. Most babies born with spina bifida will also have hydrocephalus,

which results in brain injury.

What is spina bifida?

Spina bifida literally means ‘split spine’.

Most babies with spina bifida will undergo spinalsurgery within 24 hours of birth. They may needover 20 more operations before they are 18 yearsold.

Spina bifida usually causes paralysis and loss ofsensation below the ‘split’ in the spine. This leadsto lifelong incontinence and reduced mobility.

Children with spina bifida may use a wheelchairfrom just 3 years old.

Hydrocephalus

A build up of fluidcompresses the brainand may cause thebaby’s head to

Spina bifida

The spinal cord doesnot form properly,leaving a gap or split

‘Kids like my daughter spend a lot of time in hospital. I think to a degreethey are robbed of their childhoods.’ Rachael Spiers

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Meeting the challenges ...

People with spina bifida face a lifetime of disability; we support them to overcome

unimaginable challenges.

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What is hydrocephalus?

Hydrocephalus is a build up of fluid inthe brain causing increased pressure.

The usual treatment for hydrocephalusis to insert a shunt into the brain.

The shunt drains excess fluid into thebloodstream via tubes with a valve tocontrol the pressure. The shunt is not a‘cure’, but it prevents it getting worse.

Hydrocephalus can cause manychallenges in everyday life includinglearning difficulties, memory and sightproblems, headaches, and sleepdisturbance.

Hydrocephalus – the hiddendisability

Scott Nielsen,18 years old, has hydrocephalus and

had 20 major operations before the age of 15. In

2011 Scott cycled 2,000 km across Europe to

fundraise for Shine.

‘As a neurosurgeon, I can appreciate what Shine’s support meansto families. It is a privilege to be involved with this charity – its workis urgent, uplifting and life-changing.’ Maria Cartmill, Consultant Neurosurgeon

‘Having hydrocephalus is like having a jigsaw with a piece missing’.

‘Shine answered the questions I had about mycondition. They carried on explaining when thedoctors stopped. I wish I knew then what I know now. I think all the

new ideas are great. I think Benny Bear is great forthe kids. The London group is great too. I have madegood friends and look forward to meeting up.It’s important to me to be part of Shine and its

future. I want Shine to give people like me a voiceand in order to do so they have to be listening to me.’Brian Treadwell

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Benny Bear

Benny Bear is a bear with a shunt. Benny helps children tounderstand what it means to have hydrocephalus andshows them all the things they can still enjoy in life.

There are over 400 members of the Benny Bear Club.Members receive a monthly newsletter, a Benny teddy bear,and they can interact with Benny through his blog.

To connect with Benny follow one of the following links:

Benny’s blog – www.bennysblog.co.uk

Benny Bear birthdays – www.bennysbirthday.co.uk

Benny on Facebook – facebook.com/shinebennybear

‘Being an invisible disability, makes it even harder forpeople to understand.’

Ella who has

hydrocephalus and her

twin sister Lucy, aged 9.

Hydrocephalus – visibilitythrough understanding

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We need many energetic,generous and clever thinkingpartners of different kinds to helpus achieve this - please contributeto Shine in any way you feelyou can.’

Jackie Bland, Chief Executive

email: jackie.bland@shinecharity.org.uk

Shine on ...‘Shine is the only national charity providing specialist help and asupportive community to people with spina bifida and/orhydrocephalus. We're determined to create an efficient, effectiveand proactive charity which offers the absolute best to everyonewhose lives are touched by these disabilities. We're also out tocelebrate the amazing achievements of our members and toactively encourage creativity and enjoyment within our community.

Shine’s plan for 2011- 2016, Shine Forward, is available on request.

Shine, 42 Park Road, Peterborough, PE1 2UQ 01733 555988 www.shinecharity.org.uk

Registered Charity: 249338 Registered in London no. 877990 Copyright Shine 2012

n shineUKcharity u@shineUKcharityeshineUKcharity /shineUKcharity w shineUKcharity

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