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
www.justgiving.com/SitaPatelShine We're still going! #stpauls #SitaShineLondon
www.justgiving.com/SitaPatelShine 15.5 miles done! Lunch in our bellies, off we go!!! #SitaShineLondon
www.justgiving.com/SitaPatelShine ding dong #bigben #SitaShineLondon
www.justgiving.com/SitaPatelShine The #queen says hi from #BuckinghamPalace #SitaShineLondon
www.justgiving.com/SitaPatelShine Constitution Hill - Sita makes the rules! #SitaShineLondon
www.justgiving.com/SitaPatelShine Harrods daarrrrrrrlliiinnggggg!#SitaShineLondon
www.justgiving.com/SitaPatelShine !! Don't do it! #hydepark #SitaShineLondon
www.justgiving.com/SitaPatelShine About 11 miles in #SitaShineLondon
www.justgiving.com/SitaPatelShine #paddington DONE #SitaShineLondon
www.justgiving.com/SitaPatelShine #littlevenice DONE #SitaShineLondon
www.justgiving.com/SitaPatelShine You can say what you like about #Starbucks but they just have me a free shot! #SitaShineLondon
www.justgiving.com/SitaPatelShine #abbeyroadstudios #thebeatles #SitaShineLondon
www.justgiving.com/SitaPatelShine We've made it to #Lords #SitaShineLondon
www.justgiving.com/SitaPatelShine Passing London Zooooooooom!!! #SitaShineLondon
www.justgiving.com/SitaPatelShine We're at Kings Cross already! #SitaShineLondon
www.justgiving.com/SitaPatelShine Sita and Tom hit Islington #SitaShineLondon
www.justgiving.com/SitaPatelShine

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.

EVENT: Tamworth Drop In – #SpinaBifida #Hydrocephalus @TamworthCouncil @TamworthHerald @ShineGobiR

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Event Date/Time: October 3, 2014 10:00AM – 1:00PM
Location: Tamworth Community Fire Station, Marlborough Way, Belgrave, Tamworth, B77 2NW

This is a drop in for people who have spina bifida, hydrocephalus or IIH and their families to come along and meet with Shine Support and Development Worker Liz Potts and Shine Membership Development Officer Gobi Ranganathan.

  • Event: Shine Event
  • Event Type: Social
  • Event Cost: Free
  • Cost Details: No charge for this event but donations for tea,coffee etc would be much appreciated.
  • Website: Click Here!

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

Liz Potts and Gobi Ranganathan

Liz Potts and Gobi Ranganathan

EVENT: Potteries Museum and Art Gallery @Stokemuseums @SentinelStaffs #SpinaBifida #Hydrocephalus

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Event Date/Time: September 30, 2014 11:30AM – 2:00PM
Location: Bethesda Street, City Centre, Stoke-on-Trent, ST1 3DW

The museum has the world’s best collection of Staffordshire ceramics.

PLUS: A Secret Garden – a sensory oasis with plants and fungi to smell and touch.

Explore the wildlife, landscape and geology of The Potteries. A unique collection of works of art including Picasso, Durer and Degas and national touring shows. The on-site café sells a variety of reasonable priced lunchtime meals and snacks.

  • Event: Shine Event
  • Event Type: Social
  • Event Cost: Pay on the day – see details
  • Cost Details: Admission to the museum is free and there is disabled parking onsite with a blue badge. Reasonable priced food and drinks are available in the cafe.
  • Further information: Please visit their website by clicking here!

To confirm your attendance or if you have any further questions please contact our Support and Development Worker for Staffordshire, Liz Potts via E: liz.potts@shinecharity.org.uk or M: 07789 616469

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A quality health service that YOU can access!

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If there’s one issue that our members and their families constantly worry about it’s the quality of the health services that they can access. We all know that amazing things can be achieved by our members and that disability is more about the environment than how your ‘ability’ compares to anyone else’s.

But we all also know people whose lives are seriously disrupted when a health issue arises and services aren’t quite what they might have expected.

Shine campaigns constantly to try to change NHS attitudes and improve services where we know they are lacking (we know there are some great ones too) but we also provide all the health support we can afford because we know our specialist staff understand where many mainstream professionals might not.

We are putting a new emphasis on our health work to try to reach more people in more ways and increase the support, advice and information available to you all.

Shine Health will include all our existing services both at national and local level. That’s 31 Support and Development Workers divided into countries and individual regions – so we have Shine Cymru, Shine Northern Ireland, and then in England, three regions – the North, the Midlands and the South.

We also have two specialist health staff at national level – Gill Yaz, Shine’s Health Development Manager, Health Adviser Robin Barnatt and in Northern Ireland, Health Adviser Marie McGonnell. Shine Health will also include all our web/media and paper-based information and health-related resources, including new ones and updated ones this year.

For those for whom this is too far away, or who don’t want to travel, there will be a range of remotely accessible services offered by our health advisers, including Google ‘hangouts’, Skype calls and of course 9-5, Monday to Friday telephone advice and fast responses to enquiries on social media and via e-mail. Of course we will also continue our programme of regional health-related events and get-togethers.

Through developing Shine Health in this way we hope not only to offer much more to our members, but also to continue to compile an accurate picture of the health needs that our members have and the gaps in current systems. Ideas for Shine Health are still being developed; if you have thoughts and ideas about this or want to follow progress then please do contact our health staff:

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People in the 40-49 age group said they also experienced anxieties about growing older!

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The funding for one of Shine’s most successful projects in recent years – the Silver Dreams – Shine50Plus project ended earlier this year.

The project brought together hundreds of Shine members over the age of 50 who engaged in the development of health resources, friendship groups, craft groups, telephone support groups, a closed Facebook group and much more. The project culminated in a weekend conference for the 50 pluses entitled ‘A Pioneering Generation’ – to see the photos please click here!

The end of funding has not meant the end of this group for our more ‘mature’ members, however, who say they have felt much more involved and valued by Shine through being part of the group.

Angie Coster, the project’s inspirational and energetic co-ordinator, agreed to stay on for two days a week to continue to support work with mature members, and we’ve continued to produce a newsletter and find the funding for other events and activities as the need arises.

There has been one slight change though!

One of the things members have valued about this group is the opportunity to share thoughts, experiences and frustrations about health and other issues that arise as members with spina bifida and hydrocephalus grow older. We know that this a hot topic and that probably the biggest group of people with spina bifida in history is currently entering older age for the first time – a real ‘pioneer generation’.

However, during the course of the project many people in the 40+ age group were disappointed to find that they cannot be included because of the funding restrictions on the project. Many people in the 40-49 age group said that they were also experiencing issues and anxieties about growing older that they would like to share.

For this reason, Shine’s group for more mature/older members is now open to anyone aged 40+ who feels they would benefit through being involved. If you are in this age group and would like to know more, please contact Angie Coster at E: angie.coster@shinecharity.org.uk or call our central services on T: 01733 555988 and they can pass a message onto Angie. We look forward to hearing much more from this group!

To find out more about Shine40Plus please visit www.shinecharity.org.uk/shine40plus

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

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