Q: So who owns a #ShineUKCharity Benny Bear? No matter what YOUR question relates to, we're here to help! :) #ShineUKCharity REMEMBER to visit www.shinecharity.org.uk :) #SpinaBifida #Hydrocephalus #ShineUKCharity "In the car!" #WearYellowAndShine SEE: www.shinecharity.org.uk/wyas #Shades4Shine #ShineUKCharity Did you know you can now read #ShineTogetherMagazine online? #ShineUKCharity Don't forget 2 UPLOAD your #Shades4Shine snaps 4 a chance 2 WIN!! #ShineUKCharity #SpinaBifida #Hydrocephalus Running for charity is one of the most rewarding experiences you can have, whether you’re a seasoned runner or just starting out this is the challenge for you! Is YOUR local wheelchair accessible? #ShineUKCharity Q: What is #WinnersWearYellow - Find out here: http://www.shinecharity.org.uk/wwy REMEMBER! We've lots of FREE information available at www.shinecharity.org.uk #SpinaBifida #Hydrocephalus #ShineUKCharity We've NEVER seen Benny Bear on a bicycle! #Fact Would YOUR local school be interested in holding a wear yellow and Shine day? So where's the nearest #ShineUKCharity collection pot to where you live? Popular as ever! Mr Benny Bear :) #hydrocephalus If YOU'D like to speak with one of our trained members of staff Plz T: 01733 555988 :) #ShineUKCharity Our #Fundraising Officer Shelley, is looking 4 ppl 2 run this year's #Leeds 10k! Interested? Plz let us know :) #ShineUKCharity If YOU'VE got the energy to run for #ShineUKCharity we'd LIKE to hear from you! Visit: http://www.shinecharity.org.uk/running Don't forget if U live in #Peterborough 2 help #ShineUKCharity win the @PboroCore #GigUpPboro competition! VISIT www.peterboroughCORE.com STILL time 2 order YOUR flags DIRECT from #ShineUKCharity 's FLAG Team! Click: http://m.ebay.co.uk/itm/251549264804 :) Q: Could your school benefit from finding out more about #hydrocephalus ? Order #TipsforTeachers here: http://www.shinecharity.org.uk/tipsforteachers #ShineUKCharity

New signing announced for #ShineCC2014 on the #BBC! @athenenoctuara @PeterboroughCC

Richard who recently completed the Great North Run as part of his challenge!

Richard who recently completed the Great North Run as part of his challenge!

Speaking on BBC Radio Cambridgeshire, Richard Astle, who is celebrating 10 years as Chair of Shine, by agreeing to do five half marathons, a 40 mile walk, two 10k runs, a trek in Morocco and finally a Santa Dash at the end of 2014, has described the decision as a “moment of madness!” Joining him for his trek will be Chief Executive of Peterborough City Council, Gillian Beasley.

Richard is hoping to raise £25,000 to fund a new Health and Well-being Centre for people with spina bifida and hydrocephalus. To find out more about the challenge please CLICK HERE!

If you’d LIKE to show YOUR support by making a donation right away, then please touch/click the button below!

Make a donation NOW!

Cambs 0-5 years support group @PeterborougTel @PeterboroughCC #SpinaBifida #Hydrocephalus

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Event Date/Time: September 17, 2014 10:00AM – 12:00PM
Location: Shine HQ, 42 Park Road, Peterborough, PE1 2UQ

A support group for parents/carers of children aged 0-5 years who have spina bifida and/or hydrocephalus/IIH.

Come along and enjoy a cup of coffee or tea whilst the children play.

Commenting, Shine Support and Development Worker, Sharon Lapsley said:

“This is a great opportunity to meet other parents. In addition a Shine Support & Development Worker is on hand to discuss in confidence any issues you may wish to raise.”

Parking is very limited at Shine but there is a Pay & Display car park located very close to our offices.

  • Event: Shine Event
  • Event Type: Social
  • Event Cost: Free

For more details contact Sharon Lapsley by T: 01536 400959, E: sharon.lapsley@shinecharity.org.uk or via Facebook.

REMEMBER you can also leave comments at the bottom of this page too!

#Codman Neuro supports Bertil Romner Memorial #Hydrocephalus Research Prize @Hydro2014 @JNJCares @JNJNews

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Introduction of Grant to Support Research in Hydrocephalus

Codman Neuro*, part of DePuy Synthes Companies of Johnson & Johnson, were proud to support the introduction of the Bertil Romner Memorial Hydrocephalus Research Prize, a grant to support further research into Normal Pressure Hydrocephalus. The announcement was made at the sixth meeting of the International Society for Hydrocephalus and Cerebrospinal Fluid Disorders (ISHCSF), where applicants were invited to submit research proposals to the scientific committee for 2015/16 projects. The successful applicant will be awarded the grant at the ISHCSF meeting 2015, taking place in Calgary, Canada.

Richard Edwards, 2014 Congress President and ISHCSF Committee member, explained the research grant will be awarded in memory of Professor Bertil Romner, a global thought leader and lecturer on the neurological condition who sadly passed away in 2013. ‘This generous support from Codman Neuro will facilitate the developments of new areas of research into the diagnosis and treatment of hydrocephalus, a condition that affects children and adults of all ages. The Prize will help support research into a number of types of hydrocephalus including Normal Pressure Hydrocephalus (NPH), a reversible cause of falls and dementia in the elderly, where research is needed to better identify sufferers that will benefit from treatment. The prize will also support research into Post-haemorrhagic hydrocephalus, which affects premature infants and is associated with high rates of disability in adult life, where research is needed to improve the survival of CSF shunt devices and reduce the need for repeat surgery in childhood.’

Normal Pressure Hyrdocephalus (NPH) is a neurological condition that affects approximately 2 in every 100,000 people (source). Characterized by the excessive accumulation of cerebrospinal fluid that causes brain ventricles to enlarge and stretch nerve tissue, symptoms can include gait disturbance, cognitive impairment and incontinence, symptoms that are often attributed to Alzheimer’s disease, Parkinson’s or advancing age, and consequently it is thought may be under/mis-diagnosed (Source).

In addition to the support for the research award, Codman Neuro also sponsored a one-day educational symposium for clinicians with an interest in dementia, falls and general practice, featuring a multi disciplinary faculty from across the world who discussed identification, treatment and epidemiology of the condition and concluded with a round table debate.

‘We are proud to be able to sponsor this satellite educational programme and research grant – we hope it will aid in the advancement of identification and treatment of this largely unknown condition,’ said Bertrand L’Huillier, Director Codman Neuro EMEA.

About Codman Neuro

Codman Neuro is a global neurosurgery and neurovascular company that offers a broad portfolio of devices for hydrocephalus management, neuro intensive care and cranial surgery, as well as aneurysm coils, vascular reconstruction devices and other technologies used in the endovascular treatment of cerebral aneurysms and stroke. Codman Neuro is part of DePuy Synthes Companies of Johnson & Johnson. Visit www.depuysynthes.com for more information.

©Codman Neuro, a division of Johnson & Johnson Medical Limited. 2014. All rights reserved.nph August 2014

Family Day @BealePark Wildlife Park in #Berkshire #SpinaBifida #Hydrocephalus @WestBerkshire

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Event Date/Time: September 20, 2014 10:00AM – 6:00PM
Location: Beale Park, The Child Beale Trust, Lower Basildon, Reading, Berkshire, RG8 9NW

A brilliant opportunity for families with children with spina bifida and/or hydrocephalus to meet, socialise and enjoy a fun day out together.

  • Event: Shine Event
  • Event Type: Social
  • Event Cost: Pay on the day – see details
  • Cost Details: Disabled child : £2.50 – Carer : £4.00 – Siblings : £6.00
  • Website: www.bealepark.co.uk

For more information or to confirm your attendance please contact Joanne Tailor by E: joanne.tailor@shinecharity.org.uk by T: 01959 534618 or via Facebook.

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A football team with a difference! #SpinaBifida #Hydrocephalus @Skemmenaces

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Here at Shine, we hear so many positive stories and see great things happening daily, especially on our social networks.

However, there are some stories which have to be seen to be believed. I was recently invited to visit Skelmersdale, Lancashire, by Carl Eaton (pictured above) and everyone involved in the Skem Men-aces, a football team with a difference in the North of England.

Carl, along with his wife, daughter, brother, and friends, established this dynamic football club for men with a variety of disabilities back in June 2009. The initial idea was to provide a few lads with a bit of a kick around; however, the idea soon took on a life of its own.

Last year, the whole club wore Shine yellow t-shirts as part of their fundraising for Awareness Week and raised an amazing £650, as well as generating unmissable awareness in their striking Wear Yellow and Shine outfits.

Commenting on the Skem Men-aces, Carl, who himself has spina bifida, explains what has made the club such a success.

“One of my brothers, Harry, has a learning disability and we wanted to start something that he could be involved in. The conversation started and in less than a week a football club was mentioned. We started with 12 lads, and coats for goals, and now look at us – 40 lads training, playing matches, getting fit, and having something to focus on!

“The really powerful thing is that many of these lads have nothing else to focus on in the week; this club gets them out, they’re losing weight, having a laugh, and travelling the country – some of them had never been outside of Skelmersdale before the club got going!”

Although there are a variety of conditions represented, the group includes three members who have hydrocephalus. Carl reflects, “I’ve won volunteer awards, some national, but it’s not ultimately about that – it’s about giving these guys an identity, some dignity, and an opportunity to believe in themselves whatever their level of ability.”

To learn more about the Skem Men-aces, please visit their website or follow them on Twitter!

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“…a shunt, even with its problems, is the best that we can hope for.” #Hydrocephalus

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Hydrocephalus describes conditions in which the fluid in and around the brain, CSF, is trapped and causes high pressure. The pressure can harm the delicate brain tissue, so needs treating with a shunt to remove the fluid from the head, or a Third Ventriculostomy to divert the fluid to the outside of the brain to be absorbed.

There are many causes of hydrocephalus, such as Aqueduct Stenosis, head injury, haemorrhage or tumours, and each one of these causes has its own effect on the brain. Brain cells can react to pressure by forming lots of small scars, which can alter the way the brain and learning develop.

In addition, the speed at which the pressure rises in the head can have different effects on the brain tissue itself. When pressure builds slowly, extra small blood vessels begin to form in the brain, which ensures blood and oxygen continues to get into the brain despite the high pressure in the head. This helps the blood supply, but over time makes the brain tissue stiffer, and less able to adapt to changing pressures.

This is important, as the brain is in an almost enclosed bony box, and when shunts are fitted, pressure changes beyond the usual ranges are inevitable, even with the best, most appropriate shunts which are working fine. And, because of all the changes to the brain tissue itself, it will be different for almost everyone.

Shunts drain fluid using a combination of pressure to open the valve, gravity to drain the fluid, and properties of the tubing and the fluid to control the flow. This means that for many shunts, they will drain more when you are upright, and less when lying down. Overdrainage and underdrainage symptoms, like headaches and dizziness, can be more troublesome at different times of the day or during different activities. ‘Life with a shunt’ doesn’t mean ‘living without hydrocephalus’. Many of our members tell us they get unpleasant symptoms, even when their shunt is working ‘fine’.

Shunts have saved many thousands of lives since the late John Holter designed one with Dr Spitz to treat his young son Casey. Over the 55 years since the invention of the shunt, the design has only changed a little. The principle is the same, with CSF flowing from the head to another part of the body (which used to be the heart, but now most commonly the abdomen) and is controlled by a one-way valve.

Some UK hospitals are using subgaleal shunts in tiny babies, who might not need a full shunt, but who need some temporary drainage for a few days. This shunt drains fluid into a pocket on the scalp between the skin and the skull, where the fluid is absorbed over time. This is proving to be better than removing the fluid with a needle, which can only be done for a few days before a VP shunt is needed.

According to Dr Pat McAllister of the University of Utah, in the future, it may be possible to implant a tiny pressure sensor to work with valves to control flow and pressure far more accurately than at present. Dr McAllister is also working with mathematician Professor Kalyan Raman, to see if the shunt design can be improved.

Looking a long time into the future, it may be possible to reverse early hydrocephalus with stem cell technology, which the lab Professor Esteban Rodriguez is working on in Chile.

With so much research going on over the world, it’s possible that prevention or cure for some forms of hydrocephalus is just over the horizon. Until then, for most people, treatment with a shunt, even with its problems, is the best that we can hope for.

This article was written by Gill Yaz, Shine Health Development Manager.

World’s oldest person living with #SpinaBifida?

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‘Was I behaving myself?’, Winnie asks with a mischievous grin. Winnie and her daughter Joyce are looking over some old photographs and the one in hand shows a group photo from Winnie’s 95th birthday party. Now aged 100, we believe Winnifred Connolly could be the world’s oldest person living with spina bifida.

In her own humble way, Winnie is an extraordinary woman. Born with spina bifida occulta in 1914, on the eve of the First World War, twice widowed, the mother of three children, a munitions worker during the Second World War, a grandmother to six, and great grandmother to five, it’s fair to say that Winnie has lived an incredibly full life.

As the interview proceeds, it is clear to see that Winnie’s sense of humour is a major source of her vitality. We move through accounts of school-age adventure, foreign travel stories, and precious family memories, all the time laughing loudly and reflecting on the past with fondness.

Almost in passing, Winnie recalls what she was told of the procedure to treat her spina bifida occulta. ‘They say that when I was born there was like a little pimple on my back, and that the midwife nipped it off with her nails.’ As she got older she was encouraged by an Aunt, who worked as a Sister in a local hospital, to see a consultant due to on-going back pain, but Winnie recalls, ‘My mother went crackers, oh, she went mad. She said, ‘You’re not going!’ She had a thing about hospitals; she didn’t believe in them and none of us have ever been immunised. I’ve never had a flu jab.’ After discussing the possible plans for her 100th birthday celebration next June, Winnie offers her thoughts on the secret to a long life, her answer is inevitably a canny mix of the serious and the hilarious, ‘Cups of tea! No, just behave yourself!’ [Loud laughs] ‘Don’t take life too seriously, try and help each other.’

With this, our time together ends, Winnie prepares for her regular trip to see her daughter, Doreen, in Wales and finishes her tea with Les and Joyce, her two older children, the memories of hurricanes in America and taking part in Radio 4 interviews still reverberating around the room.

Get inside my head! #Hydrocephalus video

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In an effort to overcome the fact that hydrocephalus remains a largely unknown condition, Shine has produced an animation called ‘Get Inside My Head’.

The aim of the short feature is to increase awareness and help the wider public understand the problems faced by those who live with the effects of brain fluid retention. A book has also been produced to complement the animation and ensure the widest possible audience for the piece.

Hydrocephalus affects 1 in 1,000 live births in the UK and can also be experienced later in life, especially after an injury to the head. Hydrocephalus occurs when the body fails to drain away the right amount of fluid from the brain, a substance known as cerebrospinal fluid.

The build-up of pressure on the brain can have a variety of brain injuring effects such as problems with memory, organisation, and behaviour.

Most people who experience hydrocephalus in the UK will have a shunt, a thin rubber tube, fitted in order to drain the fluid away to the abdomen. Although the procedure is significant and leaves a scar, there are often no obvious signs that a person is living with these effects.

Significantly, a shunt does not cure hydrocephalus and cannot repair the injury caused to the brain by this excessive pressure.

The animation features the voice of a young Shine member, Ella Thomas, who describes the effects hydrocephalus has had on her brain and how this can affect her approach to daily life.

Shine believes the animation will be helpful to the friends, family members, teachers, and classmates of those living with the condition, helping them to understand what life is like and how they can help.

Accessing support + information for parents of #disabled children @Contactafamily

Benefits

Know your benefits

Accessing support and information for parents of disabled children Since the introduction of changes to benefits by the UK government, parents tell us that they need information on the types of benefits they are entitled to, and help with completing benefit forms or letters to support benefits applications.

The charity Contact a Family has published a comprehensive range of information on a wide variety of issues for parents of a disabled child, outlining the benefits they are entitled to and services
which can help them, their child and their family.

Visit W: cafamily.org.uk/know-your-rights

Sheila “….had to sleep in an armchair for the next 4 days..” #IH #IIH

Shine40plus

In recent months there have been several news reports about bad weather and some areas of the UK being flooded. This is terribly upsetting for anyone, but when you are living with a disability it can make the experience even more traumatic.

One of our members, Shelia Rodgers, experienced this first-hand last year. At 4am she received an automated call from the environment agency giving a flood warning. At this point Shelia thought it was just precautionary as she lives quite a way from the sea.

Later that day Shelia was encouraged by sheltered housing staff to pack a bag. Luckily Sheila’s former Girl Guide training kicked in and she decided to pack a little more than advised, ensuring that she would have sandwiches and a flask of coffee, just in case!

Later that day a tidal surge hit Lowestoft, Shelia’s ground floor was completely flooded and she lost nearly all of her personal possessions.

Unfortunately, Sheila had no relatives nearby that she could stay with and she had to sleep in an armchair for the next four days, which really affected her IIH (Idiopathic Intracranial Hypertension) quite badly.

Sheila was subsequently rehoused 12 miles away from her former home; this loss of community connections left her feeling isolated.

However, the Shine40plus group signed Shelia up to their telefriendship group and this allows her to have contact with other Shine members of a similar age – a really positive end to what has been a tough time for Sheila.

Shine40Plus is an opportunity for people aged 40 years and over to share their experiences, make connections, and celebrate their achievements.

If you are feeling isolated and would like to join the telefriendship group, please contact Angie Coster on T: 01308 426372 or E: angie.coster@shinecharity.org.uk

World Spina Bifida and Hydrocephalus day!October 25th, 2014
1 month to go.

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