The Roald Dahl Foundation
As well as being a great storyteller, Roald Dahl was also a man who gave generously of his time and money to help people in need, especially children. After he died his widow, Felicity, set up a charity, the Roald Dahl Foundation, to continue this generous tradition. Since we began, the Foundation has given over £6 million in grants to organisations and individuals across the UK to help children and young people across the UK.
WHAT WE DO
The Roald Dahl Foundation supports practical help for children and young people (up to the age of 25) with brain or blood related problems – causes close to Roald Dahl during his lifetime. We do this through making grants to UK hospitals and charities as well as to individual children and their families. The Foundation also supports specialist paediatric Roald Dahl nurses throughout the UK caring for children with epilepsy, blood disorders or acquired brain injury
HOW WE ARE FUNDED
The Foundation needs to fundraise to make the range and size of grants we know are needed. We are funded through a mixture of our own fundraising activities, through our association with the schools sponsored reading event Readathon®, through a small percentage of the royalty income from Roald Dahl’s copyrights and through income from our endowment.
We are thrilled that John has chosen the Foundation to be a beneficiary of his heroic adventure and we wish him every success (and many fascinating and exciting adventures) en route.
THE DIFFERENCE WE MAKE
The Foundation makes grants to individuals and organisations totalling more than £400,000 per year. These grants help to improve the quality of life of hundreds of children living with serious, rare and longterm debilitating medical conditions, such as Sickle Cell Disease, Thalassaemia, acquired brain injury, epilepsy, haemophilia and neuro-degenerative conditions.
Many of these conditions are under-funded by the statutory sector and the people affected often find it hard to raise money for vital services and the support they need.
In just one year the Foundation has helped more than 4,000 children and young people in many different ways. Just some examples are:
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nursing support in hospitals and the community;
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ensuring access to new diagnostic facilities;
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provision of specialist equipment;
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small grants for essential items for families with sick children on low incomes.
Our support has:
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enabled children to have their conditions diagnosed more quickly and accurately;
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ensured that children with complex and / or rare conditions have received specialist care that would not otherwise have been available to them;
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had a lasting impact in that the NHS commits to continuing to fund our specialist nurse posts in hospitals when our funding comes to an end.
In addition, we have supported projects which have improved the quality of specialist information to more than 600 professionals working with children and young people with neurological conditions.
And our funding has ensured that more than 1,500 children and young people have received education on epilepsy – helping to reduce the stigma associated with living with the condition.
In the spirit of Roald Dahl, we say that the Foundation ‘does Wonkalicious things’. By this we mean we do things that:
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change for the better the lives of children and young people living with serious, often life-limiting conditions;
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help children to have fun during tough times in their lives;
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put children and young people first.
THE FUTURE
The Foundation is developing new ideas for tackling our medical priorities – because we think there is still much to be done to help children and young people (and their families) living with serious conditions.
We are also working on ways to raise new money for our chosen causes.
The following are examples of some of the work we have funded recently:
NEUROLOGY
In addition to Roald Dahl neurology nurses, the Foundation also makes grants to hospitals and charities to enable them to provide care, information and support for children with epilepsy, acquired brain injury and neuro-degenerative conditions.
In addition to the new Roald Dahl Epilepsy Nurse Specialist posts detailed examples of other grants to benefit children with epilepsy include:
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King’s College Hospital London, for a new portable video EEG telemetry system;
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National Society of Epilepsy, for a schools awareness programme;
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Children’s Hospice South West, for adapted beds for children with epilepsy.
Grants to support children and young people with acquired brain injury (ABI) included:
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Scottish Brain Injury Rehabilitation Service, to produce a booklet for patients and their families called ‘Brain Injury and Rehabilitation – What You Need To Know’;
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Brain and Spine Foundation, for a UK-wide pilot project on how best to support pupils with ABI, their teachers and their parents.
Other grants which will benefit children with other neurological conditions included:
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Encephalitis Society, to fund the mailing of their parent’s handbook to every member of the British Paediatric Neurology Association;
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The Niemann-Pick Disease Group, to help a Clinical Nurse Specialist travel nationally to meet with families affected by this rare disease;
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The purchase of computer equipment, for individual children and young people who have a visual impairment or acquired brain injury.
HAEMATOLOGY
In addition to Roald Dahl haematology nurses, the Foundation also makes grants to hospitals and charities to enable them to provide care, information and support for children with rare non-cancer blood conditions including haemophilia, sickle cell disease and thalassaemia.
ROALD DAHL NURSES
The Foundation’s wonderful Roald Dahl Specialist Nurses care for children with epilepsy, acquired brain injury or blood disorders. The Foundation funded the UK’s first ever paediatric Epilepsy Nurse Specialist - in Liverpool - in 1992.
There are now 46 Roald Dahl Specialist Nurses around the UK, including recent appointments in Essex, Southampton and Surrey.
The Foundation also enables Roald Dahl nurses to attend national and international conferences and courses in their specialist areas of work, all of which enhance their service to children and young people.
SMALL GRANTS
The Roald Dahl Foundation makes small grants of up to £500 to individual children, young people, and their families, who have epilepsy, acquired brain injury, haemophilia or other neurological or haematological conditions within the Foundation’s criteria.
These grants provide financial assistance to help with difficulties of caring for a sick child and are often for essential household items such as cookers, washing machines, beds and bedding, carpets and for help with additional heating bills to keep a sick child warm. We also help with many other things including specialist sensory toys for children with profound disabilities, specialist tricycles for children to enable them to play outside with their peers, and the cost of visiting a child in hospital.
As an example of the impact of our support, we made a grant of £500 to 16 year old James (who has epilepsy) to buy a laptop.
James told us: 'The laptop has helped me so much, I am now able to read a lot better and I have been able to set up my own website and launch it. I can't go out to work so I paint at home and I sell my paintings through my website, if I hadn't got the laptop I would never have been able to do this'.
THE QUENTIN BLAKE AWARD
The Quentin Blake Award is made to a charity supported by the Foundation during the previous calendar year, which Quentin Blake, our President, feels touches the lives of children in a special way. The grant is made to an organisation selected by Quentin which he feels has special merit and would benefit from additional support for a new project which would not otherwise have been possible.
The Foundation sees the grant as an annual reminder of the importance of Quentin’s contribution to the Foundation.
The latest award went to The Reader organisation in Liverpool for their Shakespeare on the Wirral project.
THE FUTURE
The Foundation has recently undertaken a strategic review to ensure we remain focussed on meeting the greatest need in the most effective and efficient way possible.
We will continue to seek good applications for funding with the aim of improving the lives of children and young people with serious medical conditions – particularly within the neurological and haematological specialities.
In order to maximise the help the Foundation is able to give directly and via other charities and NHS Hospitals, and to offset the impact of the economic downturn on the Foundation’s investments, we will continue to strive to maximise income whilst seeking to keep costs as low as possible.
This is an exciting time for the Foundation and we will continue to look for new ways to increase the impact of our work - both by addressing the immediate needs of individual children and young people and through supporting longterm changes in service design and delivery.
Above all – we believe that the lives of children and young people living with rare, longterm, serious medical conditions should contain as much fun and adventure as possible.