WATCH: Perpetua talks about growing up with #SpinaBifida

Perpetua O'Driscoll

Perpetua talks about growing up with Spina Bifida and the help she received from Shine.

NHS CEO set to Shine in Sahara! @RoyalLpoolHosps #Liverpool @LivEchonews

Aidan Kehoe

Aidan has a track record of charity work and trekking

Chief Executive at Royal Liverpool and Broadgreen University Hospitals NHS Trust, Aidan Kehoe, is about to embark on a gruelling 100km Sahara trek to support people with spina bifida and hydrocephalus. The team leave for Morocco on Friday 31st October!

Aidan, is also Treasurer of the national spina bifida and hydrocephalus charity Shine. He supports the charity in memory of his brother Michael who had spina bifida and died aged 19 at Alder Hey Children’s Hospital.

Aidan Kehoe

Aidan (right) alongside Chair of Shine Richard Astle and Chief Executive of Peterborough City Council, Gillian Beasley

To help raise funds for the charity’s work, including the development of a new national ‘Health Hub’ initiative for people with spina bifida and hydrocephalus, Aidan will set out on 31st October to spend 10 days trekking through the Sahara desert in Morocco. Fellow trekkers will include Shine’s Chairman, Richard Astle, and Gillian Beasley, CEO of Peterborough City Council where the charity’s HQ is based.

“My brother Michael died from the effects of spina bifida aged 19 and I want to do something to support others who are affected”, explained Aidan.

“As Treasurer of the charity I know the money will be well used to provide health support to people who have these conditions wherever they are, and I know what a difference that makes to people’s lives.”

Aidan and staff

Aidan with staff from the NHS trust

The trek involves walking in searing temperatures across a range of desert terrain, including some daunting sand dunes. Aidan’s training routine has included lengthy walks around Liverpool, including an 18 mile walk from Anfield to Ormskirk. Many evenings involve six-hour preparatory walks.

Aidan hopes to make a major contribution to Shine’s £50,000 target for their Health Hub, which will involve a national resource providing health and wellbeing checks and independence training for people with spina bifida and hydrocephalus, as well as locally delivered health support, and online advice and information.

To donate money to Aidan’s challenge, please visit: www.justgiving.com/Aidan-Kehoe

Aidan Kehoe

Aidan takes part in a previous walk

WATCH: Mum talks about her daughter’s #SpinaBifida diagnosis

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Kathleen McCallion talks about her daughter’s Spina Bifida diagnosis

Spina bifida literally means ‘split spine’

“A fault in the development of the spinal cord and surrounding bones (vertebrae) leaves a gap or split in the spine. The spinal cord has not formed properly, and may also be damaged. To help understand what it is, it is useful to explain the composition of the nervous system.”

For more FREE information about spina bifida please visit our website by clicking here!

An Interview with our #NorthernIreland Director @CathyMcKillop

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Cathy McKillop, Director of Shine, talks about the charity’s work.

Shine is a registered charity, which was formed in 1966, initially to help families and individuals affected by spina bifida and hydrocephalus.

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Today, Shine is a community of 75,000 individuals, families, friends, and professionals, sharing achievements, challenges and information on living with hydrocephalus, or spina bifida, and related issues. Working together throughout England, Wales and Northern Ireland, we strive to overcome challenges and achieve the best for you and your family.

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SHINE 5+ Group Meeting in North #Staffordshire – @nssap89 @StaffordshireCC

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Event Date/Time: October 31, 2014 10:00AM – 12:30PM
Location: North Staffs Special, Adventure Playground, Stanier Street, Newcastle under Lyme, Staffordshire, ST5 2SU

A chance for children aged five or over, who have spina bifida, hydrocephalus or IIH, and their families to get together at the special adventure playground in the half term holiday.

Shine support and development worker Liz Potts will be on hand to help with any issues parents wish to discuss.

  • Event: Shine Event
  • Event Type: Social
  • Event Cost: Pay on the day
  • Cost Details: Admission to the Special Adventure Playground is £5 for the first child and a charge of £5 for up to two siblings.
  • Website: www.specialadventureplayground.co.uk

For more information or to confirm your attendance please contact Liz Potts via E: liz.potts@shinecharity.org.uk or M: 07789 616469

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EVENT: SHINE Teenies @Yellowsubplay #Liverpool – #SpinaBifida #Hydrocephalus

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Event Date/Time: November 6, 2014 10:30AM 12:30PM

Location: Yellow Sub, Dempster Buildings, Atlantic Way, Brunswick Business Park, Liverpool, L3 4BE

You are invited to another get-together at the Yellow Sub. Commenting, Shine Support and Development Worker, Angela Lansley said, “Come and meet fellow pre-schoolers and their parents. If you’ve never been before, we’d love to see you this time!”

For more information or to confirm your attendance, please contact Angela Lansley by E: Angela.Lansley@shinecharity.org.uk or T: 0151 733 8392

Don’t forget you can now post comments, questions or pictures below!

It’s WORLD #SpinaBifida and #Hydrocephalus Awareness Day! #WSBHD

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The World Spina Bifida and Hydrocephalus Day reminds the public and policy makers that Spina Bifida and Hydrocephalus are a reality and increases awareness about Spina Bifida and Hydrocephalus to improve the lives of people living with these conditions.

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For information please visit: www.worldspinabifidahydrocephalusday.com

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Please DO share this post and let as many of YOUR friends, contacts and followers know that today is the big day!

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“The World Spina Bifida and Hydrocephalus Day has been established and designated by The International Federation for Spina Bifida and Hydrocephalus (IF) General Assembly in Guatemala 2011 with the aim of raising awareness and understanding about Spina Bifida and Hydrocephalus. It serves also as means to advocate and promote the rights of persons with these conditions.”

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READ: The latest edition of Together Magazine! #ShineTogetherMag

Together14Well, as usual we have a packed edition of Together to share with you! We have everything from a Royal Garden Party to the latest social media news!

Still time to add YOUR support to our #SpinaBifida and #Hydrocephalus Awareness Day campaign! #WSBHD

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Add YOUR support by simply touching this image!

This year’s official Spina Bifida and Hydrocephalus Awareness Day, takes place on Saturday 25th October 2014.

Our aim on the day is to make even more people aware of spina bifida and hydrocephalus than EVER before!

It’s never been easier for you to help! All we need is for you to show YOUR support by using your Facebook, Twitter or Tumblr account.

To add YOUR support now, please either click/touch the image below or CLICK HERE!

You can view a video tutorial on how to add an account by Clicking Here!

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Add YOUR support by simply touching this image!

 

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

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Event Date/Time: October 29, 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!

World Spina Bifida and Hydrocephalus day!October 25th, 2015
11 months to go.

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