Hari’s Shine-y new Wheels for Life!

A young boy from Grantham has received a new lease of life with a specialised tricycle arranged through the charity Shine.

Five year old Hari Knight has hydrocephalus and cerebral palsy, causing weakness on his right side and problems with balance, spatial awareness, and stamina.

Like many children with hydrocephalus, Hari has struggled to learn to ride a bike because of his poor coordination. He has been desperate to learn this skill, and family and friends found it heartbreaking to watch him try and fail, again and again.

Now Hari has a Shine-y new tricycle, purchased under Shine’s Wheels for Life scheme. The specialised trike will enable Hari to get around on his own, and in doing so, help to strengthen his weaker right leg.

Shine Support and Development Worker, Sharon Saville, who liaised with Hari’s family in the application, said: ‘The specialised trike will enable Hari to have some independence and be included when his friends are playing on their bikes. It is very important to Hari and his family that he is able to take part in activities such as this.’

Shine’s Wheels for Life initiative is a limited fund giving small grants to help provide mobility aids such as wheelchairs or trikes, as well as the training necessary to use them. Grants are given in exceptional circumstances where there is a high level of need, urgency, and other avenues of help have been exhausted.

For further information about the scheme, or to donate to the fund, contact Liz Cook on E: liz.cook@shinecharity.org.uk or T: 01733 421362.

Kate Steele takes the helm as new Shine CEO

Kate Steele (MBA) has been appointed Acting CEO for Shine, the national charity supporting people with spina bifida and hydrocephalus.

Kate, who was formerly director of Shine CYMRU and of the charity’s regional services in England, comes with a background in services development and over 15 years of management experience in the third sector.

She takes over from Jackie Bland, the charity’s CEO since March 2009.

Kate comments: ‘It is an exciting and challenging time to be taking up this role. As a membership organisation, Shine is committed to developing and strengthening services, support and advocacy for people with spina bifida and hydrocephalus. These complex conditions require specialist support, but there are so many barriers to overcome to access the support that families and individuals need. I pay tribute to Jackie, who has done a sterling job in leading the charity and developing our services through a very tough time of recession. Now it’s over to me to build on the foundations that have been laid to continue to grow and develop the services and support for our members’.

As Director of Shine CYMRU, Kate organised national events for families affected by spina bifida and hydrocephalus, and has taken an active role in advocating to improve continence and wheelchair services in Wales, including representation at the National Assembly. She has also contributed to numerous strategies and policy work, including the Welsh Government’s ‘Together for Health - Neurological Conditions Delivery Plan’, which was launched in Wales in 2014.

Kate has also been an Executive Committee Member and Treasurer of the Wales Neurological Alliance (WNA) since 2013.

 

Shine MegaCycle Festival bound for Peterborough

Families, festival-goers and sportspeople are signing up to take part in a ‘Mega’ sporting event and festival in Peterborough this summer to benefit disabled children.

The Shine Megacycle event will take place in Peterborough on Saturday 4th July. The event, which runs from 10.30am to 6pm, starts with a family friendly cycle ride around Ferry Meadows. Routes range from 3, 15, and 30 miles, so cover beginners to advanced, and there are pushchair and wheelchair-friendly route options. 

Everyone can then enjoy a barbeque and festival vibe with music and entertainment at Oak Meadow, including local bands, funfair rides, games, sporting challenges, stalls, birds of prey, reptiles, exotics and more. All proceeds will help Shine’s work to benefit children with spina bifida and hydrocephalus.

Entry to the festival is free, with a small entry fee for the cycling challenge. Every cyclist wins a medal and top prize for the raffle wins a Carrera bike worth £250.

Shine’s Megacycle Event organiser, Shelley Green, commented: ‘We’re really excited about this event - places are going fast as families and experienced riders choose their route and raise funds for Shine. We’re delighted by the generous response from local businesses who have donated gifts or will be there on the day.’

If you would like to take part, volunteer on the day, or be there as a local business, contact Shelley on 01733 421307 or E: megacycle@shinecharity.org.uk or see the Shine Megacycle page to plan your route.

danSing for Shine!

G4 singer Jonathan Ansell, BBC pundit Danny Mills, and other celebrities will soon be taking part in an evening of entertainment to benefit people with disability.

danSing for Shine will take place at Harrogate Theatre on 21st June at 7pm to raise funds for Shine, a national charity dedicated to supporting people affected by spina bifida and hydrocephalus.

Danny Mills will compère the evening. The ex Premiership and England footballer became Shine’s Patron after losing his son Archie to spina bifida and hydrocephalus in 2002. Danny will be joined by special guests, Jonathan Ansell, G4s multi platinum selling music artist, and John Farnworth, world championship football freestyler. North Yorkshire performing arts group ‘danSing', the hosts and creative inspiration behind the event, will also be taking part.

Other guests will include singer songwriters Katie Skinner (of ‘Made in Leeds’ fame), Yo Preston, Sophie Stott and Daniel Webster, African drummers Belebele, and the Brackenfield School Choir.

Danny Mills, who will have completed the IRONMAN endurance challenge in Staffordshire a week before the event, said: ‘We hope to raise thousands of pounds for Shine through a great evening of entertainment. It’s hard to explain how essential the work of Shine is. What we went through in losing Archie was terrible, and the advice and support from Shine enabled us to cope at a time when all seemed lost. Shine were there when we needed them and it’s so important that the support they provide can continue.’

Tickets for danSing for Shine are available from Harrogate Theatre, http://bit.ly/1Avo5UO or Box Office: 01423 502116.

Local charity celebrates 50 years of helping people with complex medical conditions

Local charity, Shine Surrey, has just celebrated its 50th anniversary.

The charity, which supports people from across Surrey and parts of London with spina bifida or hydrocephalus, held an anniversary tea party in Banstead Village Centre.

Liz Tadd, chairman at Shine Surrey, said: ‘Since our formation in 1965, improved medical knowledge and care have significantly increased the quality of life for those with spina bifida and hydrocephalus.

‘We now support people in their 60s as well as families with young children born with spina bifida or, increasingly, with hydrocephalus.’

The charity helps to pay for support development workers as well as equipment and home adaptations for patients. It was originally called New Association for Spina Bifida and Hydrocephalus but later changed its name to Surrey ASBAH and then Shine Surrey.

For further information visit http://bit.ly/1FMOzS3 or read the full article in the local Guardian.

 

Sharp rise in head injuries among females

A national charity has reported that the number of females being admitted to hospitals in the UK with head injury has risen dramatically over the last year. 

Research by brain injury charity Headway has shown that the number of females with non-superficial head injuries has risen by a shocking 24% since 2005-06. 

The charity goes on to report that while males remain 1.6 times more likely to be admitted for a head injury, women are increasingly at risk and appear to be catching up with their male counterparts.

 

The statistics also reveal that the number of people admitted to the hospital in the UK with an acquired brain injury (ABI) related diagnosis has increased by 10% since 2005-06.

 

Using hospital admissions statistics, Headway has compiled the first dataset on all ABI-related hospital admissions in the UK. These include non-superficial head injuries, strokes, brain tumours, encephalitis, and a variety of additional conditions.

 

For more information see Headway's article. 

 

Shine’s ‘Bella Bear’ project gains support from DM Thomas Foundation

A grant of £11,848 will support young girls with spina bifida to be better educated about their complex disability.

Funding of £11,848 has been awarded by the DM Thomas Foundation for Young People, a European grant-making trust based in London, to Shine in Peterborough, to enable the first year of a new project to proceed.

Shine’s ‘Benny Bear’ has already become a very successful way of engaging young people with the physical and learning disabilities spina bifida and hydrocephalus. Benny Bear (who has hydrocephalus) writes a blog, has booklets and an activity book, and sends out birthday cards. Children with the disabilities can become a member of the Benny Bear Club, which supports them and their parents.

Shine has adapted the Benny Bear concept to create ‘Bella Bear’, a character with spina bifida. Funding from the DM Thomas Foundation will enable the charity to create new ‘Bella Bear’ educational resources targeted towards young girls with this disability aged 0-11. It will also aid plans to create a new Benny and Bella Club to ensure equal representation of spina bifida and hydrocephalus.  

Simon Sheehan, Director of the DM Thomas Foundation said: 'Through our grants programme we are able to support some amazing local and national youth causes like Shine. Our Grants Committee and Trustees liked the ambition of the Bella Bear project, and the way it seeks to address inclusion for both boys and girls affected by spina bifida. It is hoped that the new Benny and Bella Club will encourage a wide membership, increased awareness and support for children and their families.'

Kate Steele, Chief Executive of Shine said: 'We are delighted that the DM Thomas Foundation is supporting the introduction of Bella Bear to all of Shine’s young members, and their families. New educational materials based on this character will greatly enhance our existing support and improve the representation of young girls with spina bifida within the wider Shine community.'

The grant has been possible thanks to voluntary fundraising for the DM Thomas Foundation for Young People from Hilton hotels across the UK, including DoubleTree by Hilton in Cambridge.  Gary Horvath from the hotel visited the project and said:

'What a fantastic charity. I really enjoyed visiting Shine and learning more about their work. The Benny Bear project is colourful, imaginative and useful – the Bella Bear project should hopefully offer support for young girls affected by spina bifida. I am delighted that through our voluntary fundraising support of the DM Thomas Foundation our hotel has been able to contribute to this project.'

For further information contact Louise James at the DM Thomas Foundation on E: louise.james@dmtfyp.org or Debra Chand at Shine on E: debra.chand@shinecharity.org

 

Live Music events reach more disabled

Attitude is Everything has revealed a dramatic rise in the number of Deaf and disabled fans attending live music events in the UK - highlighting many of the positive changes that promoters and venue owners are taking to attract disabled audiences.

Collating ticketing sales from festivals and venues signed to its Charter of Best Practice, the charity found that almost 114,000 disabled tickets were sold in 2014, compared to 67,000 in 2013 - an increase of 70%. 

 

The direct economic impact of these sales is an estimated £5.4m.

 

The Charter of Best Practice enables music businesses to make an ongoing commitment to improving accessibility, and encourages signatories to go beyond the legal obligations of the Equality Act. More than 100 festivals and venues have now signed the Charter, from large-scale events and arenas, including Glastonbury, Latitude, Download, Reading/Leeds and The O2 through to the 14 mid-sized venues owned by Academy Music Group and a diverse range of smaller clubs and student union halls.

 

According to Attitude is Everything founder, Suzanne Bull MBE, the figures offer compelling evidence of how the music industry is waking up to the demand for improved access, and how forward-thinking businesses can reap the benefits. 

 

‘It is heartening to see such a strong correlation between the venues and festivals who embrace our Charter of Best Practice and the numbers of disabled customers coming through their doors. It also sends out a strong message to the wider music and entertainment industry: there are potentially millions of disabled customers wanting to attend your events and, if you improve access, then they will come. It doesn't have to be expensive and it doesn’t have to be difficult. As impressive as these numbers are, they only represent the tip of the iceberg.’

 

This year also marks Attitude is Everything's 15th anniversary. 

 

For more information contact: Adam Webb on T: 07947 062360 or E: adjwebb@btinternet.com or go to http://bit.ly/1IJn9yS;

 

Tough as nails Danny takes on the IRONMAN!

Sports commentator and former professional footballer, Danny Mills, will be taking on his toughest challenge to date - the IRONMAN - in aid of charity.

Danny will be taking part in the exclusive endurance event, which covers 70.3 miles, on 14th June, to raise funds for the Gordon Ramsay Foundation charities and Shine, the charity for which he has been patron for over a decade.

The former England, Leeds and Manchester City footballer has completed tough challenges for Shine before. In 2010, Danny raced the Brighton Marathon in a wheelchair, and in 2012 cycled from Leeds to London and then completed an Olympic Triathlon the following day. He also came runner up in Celebrity Masterchef that year. However, Danny feels that IRONMAN, which involves a 1.2 mile swim, 56 mile bike, and 13.1 mile run, will be his greatest challenge to date.

‘The sheer distance involved in an IRONMAN requires physical and mental resilience that only great causes can sustain you through - and I'm hoping to get there in less than six hours!’

Danny will be racing in memory of Archie, the son he and his wife lost to spina bifida and hydrocephalus in 2002. Appreciating the support given during that tough time by the charity Shine, which supports people with these complex and life-threatening conditions, Danny has given tireless support and fundraising ever since.

‘It’s hard to explain how essential the work of Shine is. What we went through in losing Archie was terrible, and the advice and support from Shine enabled us to cope at a time when all seemed lost. Shine were there when we needed them, and I've done all I can ever since to ensure that the support they provide can continue.’

Funds raised will go to the Gordon Ramsay Foundation charities: Cancer Research UK, Scottish Spina BIfida Association, Louis Dundas Centre for Children's Palliative Care, Action Against Hunger and Meningitis Now, as well as Danny’s chosen charity, Shine.

For more information and to support Danny: http://bit.ly/1EG34TG

#FumbsUP4Folic ... National Folic Acid Awareness Day encourages women to empower one another

May 1st 2015, marks the third Folic Acid Awareness Day from the national spina bifida charity, Shine

The annual event is part of an ongoing campaign by the charity to promote timely access to folic acid and in doing so, to reduce the incidence of serious disability and distress to expectant parents. The day will feature giveaways in city centres, promotions in supermarkets and other retail outlets and colleges throughout England, Wales and Northern Ireland, with hands on support from Shine members, local MPs, council leaders, midwives, pharmacists and on-going support from Vitabiotics Pregnacare.

The 1 in 1,000 chance of an unborn baby developing spina bifida or anencephaly in the womb, means that each week 14 couples in the UK receive the devastating news that their baby is affected. However, up to 72% of these cases could be reduced by getting the right amount of folic acid at the right time.

Martine Austin, Head of Prevention at Shine said, ‘It’s vital that folic acid is taken BEFORE conception to reduce the risk of these severe conditions. The neural tube, which goes on to form the brain and spine forms in the first 28 days, before many women are even aware that they’re pregnant. So, starting to take it once you’re already pregnant is too late.’

Despite the great success of the Go Folic! campaign and Folic Acid Awareness Day, Martine warns that there is still much more work that needs to be done to ensure that all women are aware of this important information.

Martine continues, ‘Although we’re actively raising awareness throughout the year, it’s amazing to have this annual day when women can really come together as a community to share this important message with one another. We know that women will change their behaviour if they’re made aware of the information in time, in a way in which they can relate to, but we need all women to help one another in this. That’s what’s so special about today!’

The charity is encouraging women to empower one another by:

• Posting a photo or ‘selfie’ giving a ‘thumbs up’ (using the #FumbsUP4Folic hashtag) and sharing it on social media.
• Making sure their friends, relatives, employees, and colleagues know that they should be taking a folic acid supplement each day if there is any chance that they might conceive.
• Sharing Shine’s Folic Acid Awareness Day posts on Facebook and Twitter.
• Asking their local GP surgery,clinic, employer to display Go Folic! leaflets.

shineshop.org.uk goes live!

The charity Shine has launched it’s new online store, shineshop.org.uk  

The store offers one-stop shopping for practical, everyday items, and the profits from every purchase go to the charity Shine, which supports people with spina bifida and hydrocephalus.

While generating income for the charity, the new site is also a handy source of items to aid daily living.

Products in the new online store range from a handy talking timer-clock to easi-grip gardening tools and bottle openers, to a range of party goods. Everything is beautifully designed for ease of use.

To see the full range of products and to place an order, go to www.shineshop.org.uk

If YOU'VE got a Twitter account then you can also help us promote the shop by simply touching/clicking the button below!

Freemasons support SHINE with £35,000 donation

Shine, a national charity that specialises in supporting people who have spina bifida and hydrocephalus, has received £35,000 from The Freemasons’ Grand Charity. This grant will fund the salary of a Development Coordinator who will manage the Shine40Plus project.

Shine40Plus will allow people over 40 to share their experiences; providing daily social interaction, comfort, and vital information about managing their condition and looking after themselves. This is the first group of people experiencing spina bifida and hydrocephalus to reach their later years and the creation of this network will enable them to share their knowledge and experience with one another, helping to alleviate feelings of isolation and anxiety.

Speaking about the donation, Dr Vivian Thomas, Deputy Provincial Grand Master of the Province of Northants and Hunts, said: 'It is wonderful to be able to help bring people together, ensuring they receive the guidance and support they need to move into the next stage of their lives with happiness and a sense of belonging. Helping vulnerable people in our community is central to Freemasonry and we wish this project every success.' 

Speaking about the donation, Jackie Bland, Chief Executive of Shine said, 'We are extremely grateful for the support given by The Freemasons’ Grand Charity. This generous £35,000 grant will fund the post of a Development Coordinator for the Shine40Plus network for one year. This network is the first of its kind in the country to support older survivors of spina bifida and hydrocephalus. Today, for the first time in history, adults with these once life limiting conditions are living to the age of 40 and beyond, which is wonderful to know.

However, their futures are uncertain, and many now have other health problems as a result of ageing, on top of the many challenges with mobility, communication and isolation they already experience through spina bifida and hydrocephalus. Through the events, online forums, hobby groups and health checks that the Shine40Plus network will provide, hundreds of people will feel more connected, supported and confident about their futures.'

The Major Grants Scheme is just one of the initiatives driven by The Freemasons’ Grand Charity which donates over £2 million to national charities every year.

For further information contact Siobhan McCarthy at smccarthy@the-grand-charity.org

Shine in the City launches in Peterborough

Shine is inviting local communities and businesses to join a city-wide initiative to support people with lifelong, disabling conditions.

Shine, whose national office is based in the heart of Peterborough, has launched Shine in the City to develop new partnerships to raise support and awareness for people living with spina bifida and hydrocephalus.

The Shine in the City initiative launched at the charity’s head office in Park Road on Tuesday 21st April, 5.30 - 7.30pm. The evening was sponsored by law firm Irwin Mitchell, the first Shine in the City corporate partner.

During the event, Shine Chairman, Richard Astle, explained his vision for the initiative, which seeks to inspire local businesses, organisations, schools, and colleges to participate in fundraising activities, sponsorship and volunteering, while Shine provides opportunities for work experience and learning, for example, on disability awareness.

Born from the highly successful ‘Chairman's Challenge’ year in which Richard undertook physically challenging fundraising events and engaged support from local businesses and individuals, the Shine in the City initiative will ensure the momentum from events such as the Sahara trek, half marathons and Santa Dash is maintained.

Their efforts, and a generous donation by the Harry Cureton Trust, enabled the new Shine Health Suite to be built and successfully piloted by the end of 2014. The centre, based at the Shine head office in Park Road, will provide expert health checks for people with spina bifida and hydrocephalus, complex health conditions affecting mobility, coordination and development, and will form the heart of a national 'health hub' providing services and information across England, Wales and Northern Ireland.

An early target for Shine in the City will be to raise the funding needed to equip the health suite fully.

Richard has one more ‘challenge’ to complete, as he undertakes the Virgin Active London Marathon in April http://bit.ly/1oAZjag

 

Taking Charge - a new guide to living with a disability or health condition

If you have a physical or mental health condition, have just been given a life-changing diagnosis or your health is starting to worsen in later life, then a new publication called 'Taking Charge' may be for you.

Published this April, 'Taking Charge', explains your rights to a decent life, with choice and control, and provides information on what you have a right to expect from services, education and employment. It also gives guidance on what to do if you don’t get what you are entitled to.

The first part of the book deals with planning and managing your life, for instance after an accident or diagnosis, or as life changes. The remaining sections cover personal health and social care, technology and equipment, managing at home and with family, travel and mobility, leisure and sport, and learning, working and contributing. The guide also gives advice for situations when you don’t get what you need or feel you have been subject to discrimination. The guide complements the 40th edition of the Disability Rights Handbook, due end May, which provides step-by-step information about disability benefits, independent living and how to claim what you are entitled to.

Taking Charge costs £13.99. If you receive benefits, DRUK have a combined offer of Taking Charge, Disability Rights Handbook and regular updates for £31.99 if you place your order before the end of April.

Bees Shine On Easter Monday

People with spina bifida and hydrocephalus will benefit from a Championship match day bucket collection on 6th April, when Brentford FC take on Nottingham Forest FC at Griffin Park.

The Bees will be eager to maintain their push for promotion for Premier League status but will also be supporting the charity Shine on Easter Monday.

The collection for Shine will help families affected by these complex and potentially life-threatening conditions, which affect mobility, coordination and communication.

The idea for the collection came about when Shine’s Membership Development Officer, Gobi Ranganathan met Bees CEO, Mark Devlin, at a meeting to try and form a partnership between the club and the charity.

“Shine wants to be there for every person affected by spina bifida or hydrocephalus,” says Gobi. “This collection will help us to run support groups, events and provide clear information so that our members feel confident and able to get the support they need.”

Gobi, who also works as an ambassador for Shine, is a case in point. Born with spina bifida, today Gobi is an international wheelchair badminton player and Captain of the Team England Para-Badminton Squad. He was also a Torchbearer at the London 2012 Olympic Games.

Gobi’s advice for people with spina bifida, hydrocephalus or other disabilities has a positive vibe.

“These conditions can be tough, but overcoming adversity shouldn’t be feared. There’s so much to live for and achieve out there, and with the right support, anything is possible! My motto is: live life to the max - disability isn’t inability!”

To make a donation to the Matchday collection simply text GIFT42 followed by £3 to 70070.

You can also contact Gobi can via http://on.fb.me/19M7yzo or tweet him http://bit.ly/19M7yzt

Man with spina bifida spurned by bus company - again

Access for disabled people has hit the news again, as a man with spina bifida has been denied access to a bus - on two separate occasions.

Jamie Wildman from Hitchin has spina bifida. He doesn't have a car, so relies on buses to get around. Yet when he went to catch his local bus, he was told that he couldn’t get on because they didn't have wheelchair access.

Jamie complained about the way he was treated and received an apology from the company, only to have the same thing happen again within a fortnight.

Shocked by the treatment he received, Jamie contacted his local paper, the Comet, who featured the story. When Jamie was denied access for a second time, ITV News Anglia picked up on the story, which is also gaining momentum via social media.

Shine works to support people with spina bifida and hydrocephalus. Commenting on the treatment Jamie has received, Dave Isom, Shine Development Manager, said:

“It’s very frustrating! In the 21st century there’s a law to enshrine the rights and equality for disabled people and it’s pretty poor to hear that this is happening.”

The bus company Arriva has apologised again to Jamie, citing the use of non-accessible buses on occasion to cover for breakdowns. They have promised to “follow this further report up with the depot and make them aware of the additional problems Mr Wildman has experienced." (ARRIVA spokesperson)

One wonders what it will take for Jamie to have the same access as anyone else.