Plz touch the heart to LIKE this picture :) #SpinaBifidaAndHydrocephalusAwarenessWeek Find out MORE by searching #ShineReflections :) #ShineUKCharity You can add YOUR support by visiting: https://www.thunderclap.it/projects/17811-sb-and-h-awareness-day Plz HELP #ShineUKCharity spread the word :) #SpinaBifidaAndHydrocephalusAwarenessWeek Sita did it!!! Just over 10 hours and 26 miles done!!! #SitaShineLondon
www.justgiving.com/SitaPatelShine No time to reflect, almost there ... #SitaShineLondon
www.justgiving.com/SitaPatelShine About 4 miles left, only our love of Shine carrying us now! #SitaShineLondon
www.justgiving.com/SitaPatelShine #towerbridge 6 miles to go, we're a weary pair! #SitaShineLondon
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www.justgiving.com/SitaPatelShine 15.5 miles done! Lunch in our bellies, off we go!!! #SitaShineLondon
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www.justgiving.com/SitaPatelShine About 11 miles in #SitaShineLondon
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www.justgiving.com/SitaPatelShine

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!

So, let’s add NTDs to our list of global emergencies

So, let’s add NTDs to our list of global emergencies.

It’s #Spinabifida and #Hydrocephalus Awareness Week!

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Shine’s annual Spina bifida and Hydrocephalus Awareness Week aims to raise awareness of the conditions, while celebrating the fantastic achievements made by its energetic and growing community.

The third Spina bifida and Hydrocephalus Awareness Week will take place across England, Wales, and Northern Ireland from 19th-26th October 2014.

To mark the week, Shine encourages people to take part in its Wear Yellow and Shine initiative, which raised over £20,000 in 2013 to help the charity support everyone affected by spina bifida and hydrocephalus.

This year, in addition to Wear Yellow and Shine, we are launching a new initiative called #shinereflections, which aims to help boost awareness among Shine’s growing membership and active online community.

With funding from Roald Dahl’s Marvellous Children’s Charity, Shine has made three short #shinereflections films, which demonstrate the capacity of people living with spina bifida and hydrocephalus to overcome adversity. We are calling on the Shine community and anyone living with spina bifida and/or hydrocephalus to upload their own #shinereflections onto Facebook, to help raise awareness and inspire others through their stories.

Submit your video (approximately two minutes long) onto your Facebook profile and make sure to use the essential hashtag #shinereflections

For more information on sharing your #shinereflections email E: darren.fower@shinecharity.org.uk

You can also help raise awareness by simply adding your support to our Thunderclap campaign below. By adding your support through one of your social accounts, you’ll help let the world know about spina bifida and hydrocephalus awareness day! Simply click/touch the image below!

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EVENT: #Warwickshire Drop In for ppl with #SpinaBifida and #Hydrocephalus @Warwick_Courier

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Event Date/Time: October 21, 2014 10:00AM – 1:00PM
Location: Brunswick Healthy Living Centre, 98-100 Shrubland Street, Leamington Spa, CV31 3BD

This is a great opportunity for members to meet each other over a cup of tea or coffee and swap news and to update with Support and Development Worker, Elaine Adams.

Please wear something yellow to show your support for this year’s Wear Yellow and Shine as part of Spina Bifida and Hydrocephalus Awareness Week!

WarwickDropin

  • Event: Shine Event
  • Event Type: Information
  • Event Cost: Free
  • Cost Details: Admission is free – refreshments available from cafe at the Healthy Living Centre

For more information or to confirm your attendance please contact our local Support and Development Worker Elaine Adams by E: elaine.adams@shinecharity.org.uk or T: 02476 683120 and REMEMBER you can also leave a comment below!

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MAP of LOCATION:

 

#Staffordshire #WearYellowandShine – #SpinaBifida #Hydrocephalus @Midstaffsnhs

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Event Date/Time: October 25, 2014 11:00AM – 2:00PM
Location: The Grocott Centre – Fenton, Sanderson House, Clarence Street, Fenton, Stoke-on-Trent, Staffordshire, ST4 2LA

Commenting, Shine Support and Development Worker, Liz Potts said:

“We would love you to come along and join us on world spina bifida & hydrocephalus day to help us raise awareness of the conditions and celebrate in this years “Wear Yellow & Shine” Spina Bifida and Hydrocephalus Awareness Week.”

Staffordshire “Wear Yellow and Shine” with Jackie Moore and ‘Crafts for Shine’. Come along and try your hand at card making, loom banding & knitting (If knitting and you have your own needles please bring them with you). Face painting, lucky lolly game, Shine merchandise and cake stall.

  • Event: Shine Event
  • Event Type: Social
  • Event Cost: Pay on the day – see details
  • Cost Details: A small charge for crafting materials of £2 per person and face painting £1 per child, or adult (any profits will go to Shine). Donations welcome for tea, coffee, juice & biscuits.

Don’t forget to “Wear Yellow & Shine.”

For more information or if you require any further information please contact Liz Potts via E: liz.potts@shinecharity.org.uk or M: 07789 616469

Shine Play and Stay @PeterPanNursery in #Staffordshire @SentinelStaffs

peterpan

Event Date/Time: October 18, 2014 10:30AM – 12:30PM

Location: Peter Pan Nursery, 12 Hoon Ave, Newcastle-under-Lyme, Staffordshire, ST5 9NY

The group is for the parents of children with spina bifida and/or hydrocephalus aged 5 and under to meet up and talk to one another whilst the children play.

Peter Pan Nursery is a great venue with lots of accessible play equipment for the little ones to explore and enjoy.

  • Event: Shine Event
  • Event Type: Social
  • Event Cost: Free
  • Cost Details: Donations for tea, coffee etc would be much appreciated.
  • Website: http://www.thepeterpannursery.com

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

@TheLGArena improves accessibility with changing places facility!

Changing Places Facility LG ARENA 2

The LG Arena has invested in a new Changing Places facility as part of its customer experience programme. The ribbon was cut by Changing Places advocate Julie Clough and General Manager of Arenas, Guy Dunstan. The facility’s main aim is to give disabled customers greater convenience and comfort with extra features that aren’t provided in standard disabled toilets.

Located on the West Side concourse near the disabled ramp, the facility is in addition to 11 public unisex RADAR key operated disabled toilets already installed at the arena. Meeting the needs of people with multiple and complex disabilities, it includes a height adjustable adult sized changing bench and hoist; with adequate space for the disabled person and up to two assistants to manoeuvre with ease. It also features a privacy screen and height adjustable washbasin, plus a ‘Clos-o-Mat’ wash and dry automatic toilet; this has an additional optional touch-sensitive switch – a benefit to those with little body strength who wish to remain independent.

Emma Ball, Projects and Contracts Manager for the LG Arena, said:

“The Changing Places toilet increases our capability to accommodate everyone’s needs. It’s been on our ‘wish list’ for a while, so it is great we were able to secure funding to install the facility and now be able to open it.

“We know from customer feedback from the one already open within NEC, that the facility will be appreciated and used by our disabled visitors.”

These are just the first of many customer experience improvements at the LG Arena, with more scheduled for the coming months.

Guy Dunstan, General Manager of Arenas and Chairman of the National Arenas Association said: “As one of the largest entertainment venues in the world, the LG Arena is committed to giving all customers the best experience possible by making sure everyone’s needs are met.”

Sister venue, the NEC, unveiled its own Changing Places accessible toilet last year, in the main Hall 20 Atrium.

For more information about Changing Places please visit www.changing-places.org

Changing Places Facility Opening LG Arena

Bowel and Bladder Workshops for Parents and Adults @CivilSocietyUK #SpinaBifida #Hydrocephalus

Bowel and Bladder Event Date/Time: October 21, 2014 10:30AM – 4:30PM Location: Resource for London (Seminar Room 4), 356 Holloway Road, London N7 6PA This event will be in two sessions: 10:30am to 1pm : Morning session for parents 2pm to 4:30pm : Afternoon session for adults An opportunity for members to receive up to date information on bowel and bladder issues and discuss any concerns/issues in a confidential environment. Sessions to be presented by Shine’s Health Development Manager Gill Yaz and a representative from Qufora. There is no provision for children at this event and the closing date for booking a place is 7th October 2014.

  • Event: Shine Event
  • Event Type: Information
  • Event Cost: Ticket in advance – see details
  • Cost Details: £5 per person.

Refreshments will be provided and light lunches can be bought in the cafe at the venue. For more information or to book a place please contact Joanne Tailor, by E: joanne.tailor@shinecharity.org.uk or T: 01959 534618.

We are always trying to think up new ways of connecting with our members!

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Here at Shine we are always trying to think up new ways of connecting our members. We realise that often the best advice and support comes from those who can truly understand the challenges you face – your fellow members.

One of the easiest and most effective ways to connect with others is to use social media. Darren Fower, Shine’s Social Media Development Officer, has recently set up a variety of Facebook support groups; some cover a geographic area, whereas others focus on a particular condition.

The best way to find a group is to search ‘Shine’ + ‘your location’ or ‘your condition’, for example ‘Shine Nottinghamshire’.

If you cannot find a group that suits your needs or you have any questions about Facebook support groups, you can contact Darren by leaving a comment on Shine’s Facebook page or via email E: darren.fower@shinecharity.org.uk

If joining a Facebook group doesn’t appeal, and you prefer face-to-face conversations, why not try a ‘Google Hangout’ with Shine’s Health Development Officer, Robin Barnatt?

A Google Hangout is a group video call. The first Hangouts have proved very successful with topics such as spina bifida occulta and shunt issues being discussed. Whilst there is a definite topic for each talk, Robin comments that ‘because these are group discussions, we may start off talking about one topic, but this will bring up all sorts of questions, so we have covered bladder and bowel issues, mobility and lots more as the conversations have progressed’.

The easiest way to take part is by using a camera phone. All you need to do is download the Google Hangout app. If you would prefer to use a computer, you will need a web camera, a microphone, and to download the Google Hangout extension for your internet browser (if you have any problems with this, search ‘google hangout extension’ online, or contact Darren on darren.fower@shinecharity.org.uk).

If you’re interested in joining Robin for a Hangout, all you need to do is send him a message – E: robin.barnatt@shinecharity.org.uk.

Greg, who has #SpinaBifida, has overcome many life challenges…. #eBay

Greg Smith

Greg Smith joined Shine’s Board of Directors last year. In his position as Head of User Experience Research and Design for Europe at ebay, Greg helps drive the usability of the platform that we all now use to buy and sell any number of different items. Tom Scott visited ebay’s offices in Richmond to find out more about him.

The path to Greg Smith’s influential role within ebay has been by no means straightforward.

Greg, who has spina bifida, has overcome many life challenges, and he has done so not by determination alone, but also through a healthy dose of pragmatism.

Greg grew up in Eastbourne, his father worked as a butcher, his mother as a secretary. As a child he underwent procedures familiar to many Shine members. His parents, Barbara and Geoff, were determined for Greg to have as normal an upbringing as possible, both educationally and socially, rather than growing up as a protected disabled child. They ensured that he was admitted to a mainstream school, at a time when parents of disabled children had to really fight for this to happen.

Operations on his tendons to help Greg to walk meant that his mainstream schooling was interrupted by stays at Chailey Heritage, a residential hospital and school for children with a variety of conditions including spina bifida and hydrocephalus.

Whilst he was an able student and only spent limited amounts of time there, many of his peers were permanent residents and in common with many ‘special’ schools of the time, academic expectations were low. Despite his frustration with this disruption to his learning experience, Greg’s last major operation was in his early teens and he went on to catch up, and completed his A-levels in mainstream school alongside his original school mates.

Although Greg’s parents had laid great foundations for a fulfilling adult life, he decided, with the support of his family, that the best way for him to fully develop his independence was to move away from home to attend university. He opted for Sheffield Hallam and enrolled on an Engineering and Business degree course. Having always enjoyed designing and making things using his hands, this was an easy decision to make.

Reflecting on this period, Greg says, ‘The time at university made me. It’s just you, you get a better perception of how people see you, and you learn that not everyone is the same in terms of how they see you. You can find your own place, it widens your horizons’.

And his horizons have remained wide. As someone who now oversees teams of people based in several different countries for one of the world’s most famous brands, Greg aims not only to prove himself, but also to improve the lives of others.

Greg secured a graduate management trainee position with Exel Logistics (now DHL) and then developed logistics for automotive supplier, Unipart. This was in the late 1990s and during the birth of the dot com era.

Through his experience with Unipart, Greg sensed the potential opportunities within e-commerce and was asked to help develop a website which brought together designers and manufacturers. Though the project came to an abrupt end, Greg reflects, ‘It was a great idea, but it was ahead of its time – the important thing was I had seen the possibilities out there’.

After some time away travelling in South America, Greg began a postgraduate Product Design course, but it didn’t live up to his expectations and he left the course to start work with the Disability Rights Commission (DRC) as their Strategy Manager, later becoming the DRC’s Head of Strategy, Planning and Research.

The decision to join the DRC was more than just taking a job for Greg, ‘I felt an impulsion to join,’ he says, ‘The role was about social change, I was suddenly working somewhere with a workforce that was 70% disabled and very different to any of my previous working environments. I also felt I was giving something back to the generation of campaigners that had transformed disability rights in the UK during the 70s and 80s’.

It was an inspiring time to be part of the team at the DRC; Greg was an integral part of the ‘Access for All’ campaign, which transformed access regulations for buildings and transport, and, in addition to this, he helped shape the Prime Minister’s report into the life chances of disabled people.

All this work affirmed what Greg had learned from his own experience – that in order to gain equality, you have to fight.

In terms of employment, Greg asserts that this fight is ‘essential if disabled employees are to enter the work environment as equals’.

After two and half years at the DRC there were major changes afoot and at this point Greg chose to pursue another avenue and developed his own online business selling designer mobility products. The business thrived and after a couple of years Greg sold it on to an investor. The business still exists today – W: verko.co.uk

After a year of studying for a Masters degree in Human Computer Interaction, Greg worked for LBI Digitas, Europe’s largest digital marketing agency, to cement the skills he had been developing in the IT sector. After three a half years with LBI Digitas, Greg was made aware of the role at ebay, he went for it, got it, and is now very much a part of this powerful global brand.

We end the interview in Richmond as ebay’s offices in America wake up. Greg has to make a call to the US, and we close with a photo beneath a glowing neon ebay sign. It is clear that Greg is both very proud of what he has achieved and very passionate about working with Shine to use his experience and play his part in ensuring that everyone with spina bifida and hydrocephalus should access opportunities to achieve on a field equal with everyone else.

World Spina Bifida and Hydrocephalus day!October 25th, 2014
4 days to go.

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