Here is a copy of the press release for friday....Go get 'em Sam!!
PA../11
March 7 2011
Local politicians to visit Nottingham-based children's brain tumour centre of excellence
Politicians from the East Midlands are to hear how under-funding and EU red tape are threatening vital new developments in diagnosing and treating rare brain tumours in children.
Experts at The University of Nottingham's Children's Brain Tumour Research Centre (CBTRC) will discuss the challenges facing researchers studying the disease with Gedling MP Vernon Coaker and East Midlands MEP Glenis Willmott during a visit to the centre on Friday (March 11).
They will be given the chance to see first-hand the laboratories where important scientific breakthroughs are made and speak to a teenager whose rate of recovery has been drastically improved by having access to experimental drugs through clinical trials at the CBTRC.
Co-director of the CBTRC David Walker, Professor of Paediatric Oncology, said: “March is Brain Cancer Awareness Month, so this is the perfect time to be speaking to our local politicians and asking for their support in the campaign to address the inequalities which exist in Europe in treating and researching this life-threatening disease.
“Every year around 450 children are diagnosed with a brain tumour and it has overtaken leukaemia as the cancer which kills the highest number of young people. Brain tumours account for six per cent of all cancers yet receive less than one per cent of the national cancer research spending in the UK and we at the CBTRC are committed to redressing that balance.”
The academics and clinicians at the centre will be asking MP Vernon Coaker to support the All Party Parliamentary Group, which was re-established following the change of Government and hosted the launch of a national manifesto on brain tumours in autumn last year. Devised by the UK's four leading brain tumour charities — Brain Tumour Research, Brain Tumour UK, International Brain Tumour Alliance and the Samantha Dickson Brain Tumour Trust — with whom CBTRC collaborates closely, the manifesto calls for the Government to work in partnership with them to ensure early diagnosis and treatment for everyone affected by a brain tumour, implement best practice guidance for caring for people with brain tumours and significantly increase Government investment in research into the disease.
Vernon Coaker MP said: “Hearing that your child has cancer is every parent's worst nightmare. Nottingham should be extremely proud that it is home to such a centre of excellence that is helping families through what is undoubtedly one of the most distressing experiences they will ever face. I am looking forward to hearing more about the work that the scientists and clinicians do to translate cutting-edge research into new approaches to investigating, managing and treating this disease.”
More follows…
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Compared to the US and other parts of the world, research into children's cancers and brain tumours remains severely under resourced in Europe. The recent EU Clinical Trials Directive has created significant barriers to the initiation and conduct of clinical trials in children and has failed to deliver on speeding up the licensing of new drugs suitable for children's diseases.
MEP Glenis Willmott attended an event at the European Parliament in Brussels in February, organised in collaboration with the European Society for Paediatric Oncology (SIOPE) at which the issues were discussed.
She said: “Funding for research into children's brain tumours is of vital importance and without it we simply wouldn't have excellent facilities like the CBTRC producing life-saving new therapies and advances in patient care.
“I was delighted to be invited to visit this world-leading research facility and I hope this event can do much to raise the profile of this crucial issue.”
As well as seeing the specialist paediatric oncology wards at Nottingham University Hospital's Queen's Medical Centre, where the CBTRC is located, the politicians will also be given the tour of the centre's research laboratories.
Headed up by Richard Grundy, Professor of Paediatric Neuro Oncology and Cancer Biology, the laboratories have produced some significant advances in diagnosing and treating brain tumours. Among these has been work to better understand the basic genetics of rare types of brain tumours, why they may respond differently to treatment and offer varying prognoses for patients — work which was published in Nature and the Journal of Clinical Oncology.
Current work includes looking at the innovative use of delivering chemotherapy drugs directly into the spinal fluid surrounding the brain by continuous infusion, drastically reducing the dose of the drug that needs to be given (in some cases from around 450 ml to just 1ml), hence cutting down on the associated side effects.
On hand at the event to talk about the patient experience will be 14-year-old Sam White , who was given just an hour to live by the doctors who diagnosed his rare brain tumour. Now, 18 months on and following treatment at the CBTRC, Sam has defied both the experts and the odds. Although the brain tumour has left him with some lasting effects, such as memory loss, Sam is back to school and his studies in his own year-group with the help of a little extra educational support. Facing everyday challenges with a mix of pragmatism and positive-thinking Sam recently spoke of his experiences of returning to education following his illness and rehabilitation at the annual meeting of the National Union of Teachers.
Mum Pam White praised the staff at the CBTRC and Nottingham University Hospitals for the care that her son has received.
“If it wasn't for the fact that we lived so close to these excellent facilities in Nottingham, Sam would not have stood a chance. Everyone has been fantastic — from the surgeons who operated on him that first night right down to the clinical psychologist who helped him overcome his fear of MRI scans.
“Of course, what has really made a terrific impact is having access to the latest drugs and treatments through clinical trials at the CBTRC — and for Sam, being treated with warmth and understanding, not just as 'a patient'.”
Sam will launch the CBTRC's new website at the event — www.nottingham.ac.uk/cbtrc —which is designed to offer information and support to families affected by brain tumours, encourage fundraising for the centre and act as a gateway for collaboration with other brain tumour research centres around the globe.
