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Tel: 01733 555988

Trusts and Foundations

Charitable Trusts and Foundations provide essential funds that enable Shine to enhance the lives of our members in every way possible.

If you are involved with a Trust or Foundation, either as a staff member or trustee, and would be interested in supporting Shine please call us on 01733 55988 or email

Thank you for your support

We would like to thank all the Trusts and Foundations who demonstrate their belief in our work through gifts to Shine.

Below are examples of vital work which has received support in this way:

    • Family Opportunity Weekend 2014 - Coventry
    • Family Opportunity Weekend 2014 - Coventry
    • Family Opportunity Weekend
    • Family Opportunity Weekend 2014 - Coventry
    • Family Opportunity Weekend
    • This is Me visit to Brit school in Croyden
    • Family Opportunity Weekend 2014 - Coventry

Awards for All England (Big Lottery Fund)

    • Lottery Funded

Awards for All England is a grant scheme run by the Big Lottery Fund. It funds a wide range of community projects aimed at developing skills, improving health, revitalising the local environment and enabling people to become more active citizens.

Shine has received £10,000 through this scheme towards our Giving Time to Shine volunteer project. This is an initiative to increase volunteering opportunities across the organisation for people with spina bifida and hydrocephalus.

The Big Lottery Fund's generous grant will cover Shine members' travel and accommodation expenses, enabling them to take up specific training opportunities and volunteering roles within the charity. These will include: assisting at Shine's national information and social events, sitting on our Adult Members and Youth Councils, and leading activities for our popular Shine40Plus network for older people with spina bifida and hydrocephalus.

We are extremely grateful to the Big Lottery Fund for their commitment to this project to create and involve an active community of Shine volunteers and representatives with spina bifida and hydrocephalus.


Awards for All Wales (Big Lottery Fund)

    • lottery logo wales

Awards for All Wales is a grant scheme run by the Big Lottery Fund. It funds projects to help improve local communities and the lives of people most in need.

Shine has been fortunate enough to receive £4,320 through this scheme towards our Sêr Bach (Little Stars) project. Coordinated by the Shine Cymru team, this project aims to develop a support network across Wales for families with a child aged 0-10 with spina bifida and/or hydrocephalus.

The long-term goal is that two permanent groups will be established - one for North Wales, and another for South Wales. The Big Lottery Fund's grant will cover venue costs for five meetings per group in addition to games and toys, sessional workers, and advertising. It will also pay for a £500 Discretionary Fund enabling families to cover travel costs.

Sêr Bach will extend access and participation for families in Wales facing significant challenges in relation to spina bifida and hydrocephalus. Shine thanks the Big Lottery Fund for its generous contribution to this project.


The Clare Milne Trust

    • claremilnetrust

In 2014, the Trustees of The Clare Milne Trust generously made a donation of £5,000 towards Shine’s work in Devon and Cornwall. This is just one of several donations made by the Trustees in recent years towards our vital services in these areas.

This Trust was set up in 2002 by Clare Milne, granddaughter of the author A A Milne, best known for the Winnie the Pooh books. Ms Milne, who sadly passed away recently, was disabled and took a great interest in services for the disabled in, or close to, Devon and Cornwall.

Within these two counties, Shine is aware of over 300 individuals living with spina bifida and/or hydrocephalus. The Trustees’ wonderful donation will enable us to provide our members in these areas with information and support covering a wide spectrum of issues including health matters, pregnancy advice, education, benefits, housing and independent living. This is lifelong support, often from before a baby is born, through childhood and into adult life.

We are extremely grateful to the Trustees of The Clare Milne Trust for their continued support and confidence in this important work.

    • DM Thomas Foundation for Young People

DM Thomas Foundation for Young People

DM Thomas Foundation for Young People (formerly known as Hilton in the Community Foundation) is dedicated to supporting young people in need, with a particular focus on improving access to, and quality of, education and care. Since its establishment in 2000 it has raised over £15 million for charity and awarded grants to help vulnerable and disadvantaged young people across the UK and Europe.

The Foundation has awarded £11,848 towards Shine's 'Bella Bear' project to support young girls with spina bifida to be better educated about their disability.

Shine's 'Benny Bear' has already become a successful way of engaging our young members with the physical and learning disabilities spina bifida and hydrocephalus. Benny (who has hydrocephalus) writes a blog, has booklets, and welcomes children to become part of the Benny Bear Club. Our project is adapting this concept to create 'Bella Bear', a character with spina bifida.

Funding from the DM Thomas Foundation will enable Shine to create new Bella Bear educational resources targeted towards young girls with spina bifida 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 for Young People 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.'


Peter Harrison Foundation

    • phf logo 3 high res

We are delighted to announce that the Peter Harrison Foundation has pledged £7,019 over the next three years towards Shine's South East Family Support Project.

The Foundation's first grant instalment is enabling Shine's South team to proceed with a programme of learning and social activities for 0-16 year olds with spina bifida and/or hydrocephalus and their family members across the region. The programme aims to improve parents' knowledge, young people's confidence, and entire families' emotional wellbeing as they address challenges linked to spina bifida and hydrocephalus.

The first events to take place this year include family day trips to Birdworld, FarnhamHenley Regatta for the disabled, and an exciting activity day at High Ashurst Outdoor Education Centre in Surrey for 8-13 year olds.

Alongside social activities we will also host annual training days for parents to discuss and receive specialist information on health and development issues linked to their child's condition(s).

Our warmest thanks to the Peter Harrison Foundation for enabling Shine to provide such invaluable opportunities to children and their families in the South East.


Fun for All the Family at Two Day Abseil Event

Pictured: Shine fundraiser Georgia Kelly, Heart FM's Kev Lawrence and Peterborough Cathedral events manager…

Did You Know?

Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Hydrocephalus can be congenital or acquired.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously.

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected.

Shunt: a device that diverts accumulated cerebro-spinal fluid around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and seizures.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance...

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.


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