Spina bifida • Hydrocephalus • Information • Networking • Equality - Shine, supports over 9000 people with spina bifida and hydrocephalus, and their families, across England, Wales and Northern Ireland.
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Denny was born
with a hole in his
...we’ll be with
him for the whole
of his life
Shine supports over 9000 people with spina bifida
and hydrocephalus, and their families, across
England, Wales and Northern Ireland.
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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 our
members have to overcome. Our approach is to realise these goals by creatively enabling
members, staff, and supporters to engage with our purpose in as many different ways as possible.
Shine’s Go Folic! campaign alerts women to
take extra folic acid BEFORE they conceive to
help prevent spina bifida.
First steps ... or first wheels ...
We strive to help
they need to
it be exercise,
training or treatment.
We support parents
whose unborn child is
diagnosed with spina bifida and work with
policy-makers to improve care.
‘My Shine Support
Worker has been a
constant tower of
strength since day
one. She was there
when my daughter
was born and she
came to be with us
when her shunt
School and college
Shine’s Education Advisers help ensure
that the effects hydrocephalus can have on
memory, concentration and behaviour are
recognised so that they don’t stop children
achieving their potential.
And all the years beyond ...
Whilst some services fade away when a disabled child reaches
adulthood, Shine offers lifelong support.
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Shine has always been there for
me, to support me and help me
Shine 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 offer
their comprehensive knowledge and experience to professional health and social care staff.
Shine’s magazine, website and busy
‘first-contact’ centre ensure a constant
flow of information to and from our
members. We also facilitate groups and
organise events throughout the year.
This issue kindly
passionate I get
about my work on
bowels. I believe
everyone has the
right to the support
to get clean and
Shine uses partnerships to influence
policy, improve services and advance
Above: Shine’s members are involved
in policy-making at every level.
Every donation helps, no matter how small ...
The charity relies on voluntary donations, sponsorship, and its own
trading company to fund all its services.
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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.
A build up of fluid
compresses the brain
and may cause the
baby’s head to
The spinal cord does
not form properly,
leaving a gap or split
What is spina bifida?
Spina bifida literally means ‘split spine’.
Most babies with spina bifida will undergo spinal
surgery within 24 hours of birth. They may need
over 20 more operations before they are 18 years
Spina bifida usually causes paralysis and loss of
sensation below the ‘split’ in the spine. This leads
to lifelong incontinence and reduced mobility.
Children with spina bifida may use a wheelchair
from just 3 years old.
‘Kids like my daughter spend a lot of time in hospital. I think to a degree
they are robbed of their childhoods.’
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Meeting the challenges ...
People with spina bifida face a lifetime of disability; we support them to overcome
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Hydrocephalus – the hidden
What is hydrocephalus?
Hydrocephalus is a build up of fluid in
the brain causing increased pressure.
The usual treatment for hydrocephalus
is to insert a shunt into the brain.
The shunt drains excess fluid into the
bloodstream via tubes with a valve to
control the pressure. The shunt is not a
‘cure’, but it prevents it getting worse.
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.
Hydrocephalus can cause many
challenges in everyday life including
learning difficulties, memory and sight
problems, headaches, and sleep
‘Having hydrocephalus is like having a jigsaw with a piece missing’.
‘Shine answered the questions I had about my
condition. They carried on explaining when the
I wish I knew then what I know now. I think all the
new ideas are great. I think Benny Bear is great for
the kids. The London group is great too. I have made
good 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 voice
and in order to do so they have to be listening to me.’
‘As a neurosurgeon, I can appreciate what Shine’s support means
to families. It is a privilege to be involved with this charity – its work
is urgent, uplifting and life-changing.’
Maria Cartmill, Consultant Neurosurgeon
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Hydrocephalus – visibility
Benny Bear is a bear with a shunt. Benny helps children to
understand what it means to have hydrocephalus and
shows 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
Ella who has
hydrocephalus and her
twin sister Lucy, aged 9.
‘Being an invisible disability, makes it even harder for
people to understand.’
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/shineUKcharity w shineUKcharity
Shine on ...
‘Shine is the only national charity providing specialist help and a
supportive community to people with spina bifida and/or
hydrocephalus. We're determined to create an efficient, effective
and proactive charity which offers the absolute best to everyone
whose lives are touched by these disabilities. We're also out to
celebrate the amazing achievements of our members and to
actively encourage creativity and enjoyment within our community.
We need many energetic,
generous and clever thinking
partners of different kinds to help
us achieve this - please contribute
to Shine in any way you feel
Jackie Bland, Chief Executive
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