Over the last 9 months, here at Roald Dahl's Marvellous Children's Charity we have taken a fundamental look at who we are here for and what our priorities should be.

Which children and young people should we be supporting and which of their needs should we be helping to meet?

Our proposed future direction was published on this site and people have been telling us what they think. We are now analysing the results and creating a final statement about our new direction and a plan for putting it all into practice, which we'll publish here in early June. However, if you ever have any ideas about what we should do, or what we should do differently, we are always keen to hear it.

BARONESS FLOELLA BENJAMIN LAUNCHES NEW FILM FOR CHILDREN WITH SICKLE CELL DISEASE

On Monday 22 April, Baroness Floella Benjamin and our Marvellous CEO Richard Piper launched a new film for children with sickle cell disease, funded by Roald Dahl's Marvellous Children's Charity. Attendees at the All party Parliamentary Group on Sickle Cell and Thalassaemia met Crystal and Veronica, who star in the film, which includes real and animated versions of JLS and gives practical peer-to-peer advice to children on how to live with sickle cell disease.

OUR MARVELLOUS 21st BIRTHDAY PARTY AT 10 DOWNING STREET

On 6th Nov 2012, Tim Minchin, Quentin Blake and Heston Blumenthal joined Samantha Cameron at Number 10 Downing Street to celebrate the work of Roald Dahl's Marvellous Children's Charity, helping to support seriously ill and disabled children around the UK.
Tim Minchin, award winning composer of smash hit West End production Matilda The Musical said “This marvellous charity believes that every child has the right to have the best life possible, however difficult and short that life might be.”
He said “The charity has a brilliant holistic approach helping children with rare and severe disorders of the brain and blood, to have better health, a fuller life and a happier family.”
Ongoing support and donations are crucial for the charity in its work, which was set up in 1991. The charity provides practical help by supporting families to assist with equipment purchases such as wheelchairs, supports grassroots projects, funds specialist paediatric neurological and haematological nurses, and provides grants for training and research.
Special guests included the families helped by the charity such as Kharis and Edward (pictured with Tim Minchin, Samantha Cameron and CEO Richard Piper). Kharis (13) and Edward (9) both have sickle cell and are patients of Phil Daly, a Roald Dahl haematology specialist children's nurse at St Mary's Hospital, Paddington.
Chief Executive, Richard Piper, said:”I'm delighted that we were able to host an event at Downing Street. Roald Dahl's Marvellous Children's Charity exists to fill gaps and those gaps are still enormous. For example we have received 16 enquiries in the last 12 months for our unique specialist nurses programme. But at the moment we only have the funds for one.”

ROALD DAHL DAY CELEBRATIONS AT GIPSY HOUSE

On Sunday 9th September 2012, thanks to the generosity of Mrs Dahl, we threw open the gates of Roald Dahl's magical garden at Gipsy House as part of the celebrations for Roald Dahl Day.

Visitors were treated to a special first appearance of our croc, and below are the wonderful winners of our photo competition.

Huge thanks to everyone who came along to support the day and especially to our marvellous team of volunteers without whom the event would not have been possible.

Jessica and Aidan (pictured left) are the wonderful winners of our Croc photo competition - congratulations and thank you for taking part - we hope you had a marvellous day!

We also just love this marvellous photo of Ella and Lilly (pictured right) having a great time meeting Croc!


Our thanks as well to everyone who took the time to leave their comments in our book:

"We had a wonderful day. What a privilege! "

"What a gorgeous place, everyone's - children and grown ups alike - dream setting. Such a happy thoughtfully organized event. Thank you"

"Well done to the team who organised the day, it was superb."

"What a wonderful afternoon at Gipsy House. We loved seeing the writing hut and imaging Roald at work! Really well organised!"

"What a lovely way to keep Mr Dahl & his books alive and kicking – thanks"

"Never had such a fun day out – an inspirational day"

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REPORT HIGHLIGHTS IMPORTANCE OF SPECIALIST SICKLE CELL AND THALASSAEMIA NURSES

Specialist nurses for sickle cell and thalassaemia need to be safeguarded and their role strengthened, says a new report launched today at the Royal College of Nursing Congress in Harrogate.

The report, Understanding the contribution of sickle cell and thalassaemia specialist nurses, emphasises the value specialist nurses bring to the NHS QIPP (Quality, Innovation, Productivity & Prevention) initiative and describes the vital service provided by Sickle Cell and Thalassaemia (SCT) nurses.

The report is the culmination of six months of investigative work by nursing experts together with patient groups, funded by the first ever Roald Dahl Research Award. Project chair and co-author, Professor Elizabeth Anionwu, says: “It was a great honour to be asked to chair this project, particularly as I was the first ever nurse to be appointed as a sickle cell and thalassaemia nurse specialist in England, way back in 1979.

“We must now make every effort to safeguard the jobs of existing specialist sickle cell and thalassaemia nurses, commission more where they are needed and ensure that they all have appropriate training and resources to further improve patient care.”

Roald Dahl's Marvellous Children's Charity chief executive Richard Piper says: “It is fantastic to see this project backing up what we've intuitively known for many years – that specialist nurses play a crucial role in supporting children and their families as they come to terms with these conditions.”

He adds: “We are incredibly proud that over the years Roald Dahl's Marvellous Children's Charity has helped to fund 47 specialist nurses across a range of severe neurological and haematological conditions; but we are also acutely aware that far too many children are not getting the standard of care they deserve, just because they live somewhere without specialist nurses. We reaffirm our pledge to improving the provision of specialist nursing, working with the NHS. This research will help us to make that happen.”

Click here to download the full press release