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A selection of news relating to Spina bifida • Hydrocephalus • Information • Networking • Equality - SHINE
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Who we are.........?

Spina bifida • Hydrocephalus • Information • Networking • Equality - SHINE is Europe's largest organisation dedicated to supporting individuals and families ...
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Disabled runner denied marathon medal

DONATE - http://uk.virginmoneygiving.com/DeanGodwyn - Dean Godwyn who has spina bifida and took part in Sunday's London Marathon and fought to finish after 1...
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Twitter / SHINEUKCharity: Great article in the latest ...

Twitter / SHINEUKCharity: Great article in the latest ... | Shine News | Scoop.it
Great article in the latest edition of @CambsChamber CONNECTED ;) http://t.co/zPXZguekRI
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Shine Northern Ireland - How can we help YOU?

Shine Northern Ireland are dedicated to supporting individuals and families as they face the challenges arising from spina bifida and hydrocephalus. Visit: www.shinecharity.org.uk
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Neurological specialists start groundbreaking research that could have significant impact for people with hydrocephalus

Neurological specialists start groundbreaking research that could have significant impact for people with hydrocephalus | Shine News | Scoop.it

Neurological specialists in Liverpool are leading a groundbreaking research project which could significantly impact upon the treatment of children and adults with hydrocephalus.

 

Neurosurgeons from Alder Hey Children’s Hospital and The Walton Centre will be the chief investigators for the study, which has recently been awarded a £2m grant from the NIHR HTA* programme.

 

The MCRN and SHINE (Spina Bifida, Hydrocephalus, Information, Networking, Equality) have been approached to assist in identifying appropriate individuals to provide patient and public representation as members of the trial team.

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"Many ppl who have spina bifida will suffer with problems of constipation + faecal incontinence."

"Many ppl who have spina bifida will suffer with problems of constipation + faecal incontinence." | Shine News | Scoop.it

Many people who have spina bifida will suffer with problems of constipation and faecal incontinence. The Antegrade Continence Enema or ACE is a way of managing bowel emptying at a convenient time each day, and should reduce both constipation and soiling episodes.

The procedure involves sitting on a commode or toilet whilst a washout is given through a small opening or stoma on the abdomen.

Because creating an ACE stoma requires an operation, the doctor will usually recommend it only when all other efforts to manage the bowel have been tried and have failed.

How does it work?

To create an ACE stoma, the surgeon will cut off the appendix, still with its blood supply, and connect one end to the large bowel and the other end to the wall of the abdomen at the navel or lower down below the level of most underwear. This small opening or stoma is used to pass a tube called a catheter into the bowel so that fluid can be introduced to flush faeces out through the anus. This is called an ACE washout. For people who have previously had their appendix removed, there are other ways of making an ACE stoma. For example, a tiny segment of small bowel may be used.

 

FIND out more: http://www.shinecharity.org.uk/spinabifida/information-publications/ace-procedure ;


Via ShineUKCharity
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WATCH Information about Spina Bifida VIDEO

We've got LOADS of FREE and useful information 4 YOU @ www.shinecharity.org.uk...
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CAR STICKERS - Spina bifida • Hydrocephalus • Information • Networking • Equality - SHINE

SPECIAL offer 10 x £22 - www.ebay.co.uk...
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"Cracking VIDEO" WATCH ex-ENGLAND STAR Danny Mills cycling 4 Archie Mills Memorial Challenge 2012

"Cracking VIDEO" WATCH ex-ENGLAND STAR Danny Mills cycling 4 Archie Mills Memorial Challenge 2012 | Shine News | Scoop.it

On Midnight of the 22nd September, Shine patron and former Leeds United and England star, and 2012 Celebrity Masterchef competitor Danny Mills will be leaving Elland Road Stadium in Leeds, to begin his epic 200 mile peddle to Canary Wharf in London, where he will compete the very next day in the Virgin London Triathlon.

 

http://www.shinecharity.org.uk/leeds2london

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It is a year since Shine’s Membership Project officially started! HELP REQUIRED!

It is a year since Shine’s Membership Project officially started! HELP REQUIRED! | Shine News | Scoop.it

It is a year since Shine’s Membership Project officially started. Our Membership Development Officer, Gobi Ranganathan, would like to hear the views of members on how it’s all going.

 

Please complete this survey by August 31 2012 – the first three surveys drawn out of a hat after that date will win a bag of Shine goodies. http://www.shinecharity.org.uk/media-centre/news/2012/07/19/summer-survey

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Wonder who'll win this year's "Shine Young Achiever" award??

Wonder who'll win this year's "Shine Young Achiever" award?? | Shine News | Scoop.it

Shine Young Achiever (for a young person up to the age of 25) The Shine Achievement Awards will be presented at the Annual General Meeting on 29th November.

 

FIND OUT MORE: http://www.shinecharity.org.uk/shineawards

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Shine Professional Award - who do YOU think should win it?

Shine Professional Award - who do YOU think should win it? | Shine News | Scoop.it

Let's celebrate achievement - your nominations are needed! The Shine Achievement Awards will be presented at the Annual General Meeting on 29th November.

 

If YOU know of a professional who deserves recognition for their work with spina bifida and/or hydrocephalus - why not put them forward for the award - its FREE to submit! :)

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Intracranial Hypertension ocurs in about 1 or 2 in 100,000 people

Intracranial Hypertension ocurs in about 1 or 2 in 100,000 people | Shine News | Scoop.it

Sometimes called Idiopathic Intracranial Hypertension, benign Intracranial Hypertension or Pseudotumour Cerebri is a rare condition which occurs in about 1 or 2 in 100,000 people.

 

Sometimes called Idiopathic Intracranial Hypertension, benign Intracranial Hypertension or Pseudotumour Cerebri is a rare condition which occurs in about 1 or 2 in 100,000 people.

In children, boys and girls are affected equally, but if the onset is in adult life, the majority of cases are seen in women.

 

READ: http://www.shinecharity.org.uk/hydrocephalus/information-publications/intracranial-hypertension-and-the-child-at-school

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Folic Fred - Watch him and learn!

Watch this quirky video starring Folic Fred! It carries a vital message -- women need to take folic acid BEFORE they become pregnant. Everyday in the UK at l...
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Do you think that Dean Godwyn deserves a London Marathon medal? Watch: http://bit.ly/10z1t4a

☑ Yes ☑ No (Do you think that @Dean_Godwyn deserves a @LondonMarathon medal? Vote now! CLICK: http://t.co/DwjuL2AZKQ)
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Go Folic! Toheed's parents on their wonderful son & the benefits of folic acid - with Urdu

This film featuring Haleema, Saj and their son Toheed emphasises the need for the message to be clearly communicated (Haleema also gives the Go Folic! messag...
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Baby Noah Laughing at Sellotape

Noah has a condition called Spina Bifida, which means split spine he's paraylsed from the chest & only has 2% brain due to a cyst, Noah has a shunt fitted inside his head to drain fluid down to his tummy this is called Hydrocephalus, Noah also has...
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BRAND new "Support Group – Lincolnshire" #SpinaBifida #Hydrocephalus

BRAND new "Support Group – Lincolnshire" #SpinaBifida #Hydrocephalus | Shine News | Scoop.it
Shine created a poster on checkthis, the most beautiful way to create and share stunning posters with friends and family.
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You can now Pre-BOOK your very own copy of the forthcoming Shine Cook Book!

You can now Pre-BOOK your very own copy of the forthcoming Shine Cook Book! | Shine News | Scoop.it

"I have chosen to put together a recipe book because of how important cooking, especially baking, is to me. It provides a much needed distraction from day to day life. At the end you can see the jewel of your hard work. Plus the gift of cake to others brings such joy."

 

I am Rebecca Morris, 22 years old from North Yorkshire, I am putting together a celebrity recipe book to raise awareness and funds for the charity Shine. 

 

FIND out MORE or PRE-BOOK your copy NOW - Visit: http://www.shinecharity.org.uk/cookbook


Via ShineUKCharity
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Noah Wall from Abbeytown - One parents experience..........

Noah Wall from Abbeytown - One parents experience.......... | Shine News | Scoop.it

"This should have been an amazing day for his mum and dad, but as Noah took his first breath they were told that he wouldn't make it due to having brain damage and severe Spina Bifida. Doctors told his mum and dad they would not resuscitate Noah if he wasn’t able to breathe on his own, nor would they close the Spina Bifida, as the opening was too large.


"Coming away from the hospital knowing this, Noah's mum and dad decided to plan a funeral and share the story online via Facebook, Twitter and a blog, to help raise awareness."

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Benny Bear's BIrthday Party! THIS Saturday 15th Sept @Queensgate_PB Shopping Centre

Benny Bear's BIrthday Party! THIS Saturday 15th Sept @Queensgate_PB Shopping Centre | Shine News | Scoop.it

On Saturday the 15th of September, Queensgate Charity of the Year 'Shine' would like to invite you to celebrate with them as their mascot Benny Bear has a Birthday Party! With a day of party games, face-painting and a bouncy castle, Shine is inviting Peterborough families with young children to come down and have fun with Benny, to help us raise vital awareness and money for families affected by disabilities.

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Celebrity Masterchef & Charity Fundraiser Danny Mills

Celebrity Masterchef & Charity Fundraiser Danny Mills | Shine News | Scoop.it
Staff from the charity were there for the Mills family through the challenges of such a difficult experience.
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Charity Bike Ride - with Danny Mills

Charity Bike Ride - with Danny Mills | Shine News | Scoop.it
RT @Active4Shine: @shineukcharity Ride with Danny Mills on our Charity Cycle Ride - http://t.co/0uKuIeN3...
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“..an opportunity 4 adults with spina bifida 2 get together in a relaxed setting.”

“..an opportunity 4 adults with spina bifida 2 get together in a relaxed setting.” | Shine News | Scoop.it

In Full Working Order Day is an opportunity for adults with spina bifida to get together in a relaxed setting.

 

It offers attendees a chance to share experiences and concerns with Shine’s Health Development Manager Gill Yaz and local Support and Development Worker Angie Coster.

Interested?

 

Book YOUR free places NOW – Simply CLICK HERE: http://form.jotformpro.com/form/21844484762966

 

More Information?

Contact Angie Coster on 01308 426372 by email angie.coster@shinecharity.org.uk or on Facebook @ http://www.facebook.com/Shine.Angie.Coster 

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Robin Barnatt Shine Health Development Officer is on FACEBOOK

Robin Barnatt Shine Health Development Officer is on FACEBOOK | Shine News | Scoop.it

Robin Barnatt Shine's Health Development Officer, is now "on Facebook", waiting to help you with YOUR questions relating to Hydrocephalus.

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