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Shine supports over 9000 people with spina bifida
and hydrocephalus, and their families, across
England, Wales and Northern Ireland.
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Shine_8ppA4_AW_Aug12Rev2_Laout 1 06/12/2012 17:29 Page 2
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We strive to help
our members
gain whatever
they need to
improve their
mobility, whether
it be exercise,
equipment,
training or treatment.
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Whilst some services fade away when a disabled child reaches
adulthood, S*+0' offers lifelong support.
At every stage of life,
S*+0' has a role to play...
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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.
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S*+0's Go Folic! campaign alerts women to
take extra folic acid BEFORE they conceive to
help prevent spina bifida.
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We support parents
whose unborn child is
diagnosed with spina bifida and work with
policy-makers to improve care.
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My S*+0' Support
and Development
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
was fitted.
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S*+0's Education Advisers help ensure
that the effects hydrocephalus can have on
memory, concentration and behaviour are
recognised so that they dont stop children
achieving their potential.
Shine_8ppA4_AW_Aug12Rev2_Laout 1 06/12/2012 17:29 Page 3
1
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The charity relies on voluntary donations, sponsorship, and its own
trading company to fund all its services.
S*+0' has always been there for
me, to 5722146 me and *'.2 me
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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.
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S*+0'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.
S*+0' uses partnerships to influence
policy, improve services and advance
research.
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Shine_8ppA4_AW_Aug12Rev2_Laout 1 06/12/2012 17:29 Page 4
Born with 52+0# $+(+&# ...
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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
old.
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.
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A build up of fluid
compresses the brain
and may cause the
babys head to
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The spinal cord does
not form properly,
leaving a gap or split
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Shine_8ppA4_AW_Aug12Rev2_Laout 1 06/12/2012 17:29 Page 5
Meeting the %*#..'0)'5 ...
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Shine_8ppA4_AW_Aug12Rev2_Laout 1 06/12/2012 17:29 Page 6
"*#6 +5 *;&41%'2*#.75?
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.
Hydrocephalus can cause many
challenges in everyday life including
learning difficulties, memory and sight
problems, headaches, and sleep
disturbance.
H;&41%'2*#.75 the hidden
disability
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(70&4#+5' (14 S*+0'.
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'# fa!iie&. I' i& a $%i)iege '# be i")#)ed *i'h 'hi& cha%i'+ - i'& *#%k
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.Ha)i"g h+d%#ce$ha(& i& ike ha)i"g a jig&a* *i'h a $iece !i&&i"g/.
S*+0' answered the questions I had about my
condition. They carried on explaining when the
doctors stopped.
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.
Its important to me to be part of S*+0' and its
future. I want S*+0' to give people like me a voice
and in order to do so they have to be listening to me.
B4+#0 4'#&9'..
Shine_8ppA4_AW_Aug12Rev2_Laout 1 06/12/2012 17:30 Page 7
B'00; B'#4
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.
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H;&41%'2*#.75 visibility
through understanding
Shine_8ppA4_AW_Aug12Rev2_Laout 1 06/12/2012 17:30 Page 8
We "eed !a"+ e"e%ge'ic,
ge"e%#(& a"d ce)e% 'hi"ki"g
$a%'"e%& #f diffe%e"' ki"d& '# he$
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'# Shi"e i" a"+ *a+ +#( fee
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J#%-+' B.#0&, C*+'( E:'%76+8'
email: jackie.bland@shinecharity.org.uk
S*+0' on...
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&($$#%'i)e c#!!("i'+ '# $e#$e *i'h &$i"a bifida a"d/#%
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a"d $%#ac'i)e cha%i'+ *hich #ffe%& 'he ab&#('e be&' '# e)e%+#"e
*h#&e i)e& a%e '#(ched b+ 'he&e di&abii'ie&. We'%e a&# #(' '#
ceeb%a'e 'he a!a,i"g achie)e!e"'& #f #(% !e!be%& a"d '#
ac'i)e+ e"c#(%age c%ea'i)i'+ a"d e"j#+!e"' *i'hi" #(% c#!!("i'+.
S*+0's 2.#0 (14 2011- 2016, S*+0' F149#4&, +5 #8#+.#$.' 10 4'37'56.
S*+0', 42 Park Road, Peterborough, PE1 2UQ
01733 555988 999.5*+0'%*#4+6;.14).7-
Registered Charity: 249338 Registered in London no. 877990
Copyright Shine 2012
n
shineUKcharity u@shineUKcharity
eshineUKcharity /shineUKcharity wshineUKcharity
Shine_8ppA4_AW_Aug12Rev2_Laout 1 06/12/2012 17:29 Page 1