Hannah, who runs the SDBTT Hannah Jones Fund with her family has raised a staggering £160,000.  She has been spurred on by the severe lack of funding into brain tumours and has made a significant difference to the research SDBTT has been able to fund.

Hannah, who has undergone three major operations on her brain has suprised everyone, including her doctors, with the recovery she has made. She is now studying at Chester university, whilst still finding time to carrying on fundraising and help raise vital awareness for brain tumours and the need for increased research and support.

Read the full article here.

Samantha Dickson Brain Tumour Trust (SDBTT) welcomes new Guidance governing how GPs refer suspected brain tumour patients for MRI scans which will improve outcomes and save lives which responds directly to calls from Samantha Dickson Brain Tumour Trust and other brain tumour charities for health authorities and Government to take action to speed up the diagnosis of the condition.

If busy medical professionals are able to act on the Department of Health’s (DH) new best practice guidance ‘Direct Access to Diagnostic Tests for Cancer’ (issued in April) it will go a long way to achieving one of the key aims of the ‘Manifesto for Everyone Affected by a Brain tumour’ – developed by Samantha Dickson Brain Tumour Trust and other brain tumour charities – earlier and better diagnosis of brain tumours.

In order to facilitate faster diagnosis of brain tumours, the new guidance encourages GPs to initiate a direct referral for MRI brain scan at the same time as initiating an urgent referral to a specialist and sets out the symptoms which would justify such a referral.

Sarah Lindsell, CEO of SDBTT, said “58% of brain tumours are presently diagnosed because of an emergency presentation with only 1% of patients diagnosed following an urgent GP referral for suspected cancer – this guidance is a major breakthrough to change these dreadful statistics in the future.   It has been a long-standing aim of Samantha Dickson Brain Tumour Trust to reduce diagnosis times for both adults and children, which is evidenced through our investment in our HeadSmart: be brain tumour aware campaign.  We hear devastating stories of late and missed diagnosis on a daily basis and welcome any action to improve diagnosis times for patients in the future as it will reduce long term disabilities and ultimately save lives.“

The guidance sets out three sets of symptoms, which since 2005 have justified urgent referral for a maximum 2 week wait, but which would now also justify direct referral to scanning. These are detailed in the notes but include combinations symptoms such as headaches, vomiting, posture change and blackouts. It does point out that clinical judgement is still required because while 70% of patients with a brain tumour will experience a headache during their illness the chance of a headache being associated with a brain tumour is around 0.09%.

At the same time it confirms that over the next four years an unspecified share of the £450m dedicated to the Improving Outcomes: A Strategy for Cancer will be dedicated to raising the signs and symptoms of cancer and fund increased GP access to diagnostic tests such as a MRI.

Sarah Lindsell added: “The challenge is not to ensure ALL GPs are aware of this new guidance, including the signs and symptoms of brain tumours, and implement it effectively.  Brain tumours kill more children and adults under 40 than any other cancer and we will promote this guidance to all GPs and people affected by a brain tumour to save lives.”

The Department of Health’s announcement is available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_133510

The SDBTT Alex Bolt Fund, one of our dedicated support groups, has recently presented a cheque for £85,000 to Samantha Dickson Brain Cancer Unit at University College London’s (UCL) Cancer Institute. The Alex Bolt Research Fellowship, currently held by Dr Steve Pollard, will conduct research into the most common malignant brain tumour and its treatment and this significant investment by the group, will make a real difference to the research being carried out.

Dr Pollard is at the forefront of research into cancer stem cells in brain tumours at UCL, noting that a great highlight for him has been the progress in looking for new drugs that could be used to treat glioblastoma, the most common and most aggressive malignant primary brain tumor.  The very latest cell imaging technologies and analysis tools have been used to identify drugs that can block the proliferation of glioblastoma cells without affecting normal cells.  The research has shown that certain drugs which block related proteins called kinases can stop GSCs multiplying in the lab. Such new ‘smart drugs’ may improve treatment for people with glioma brain tumours.

“This is really exciting progress in research into brain tumours.” says Sarah Lindsell, Chief Executive at SDBTT. “We are advancing daily in our understanding of how brain tumours work and are therefore better able to fight them with appropriate treatment.”

As Julia Trusler, Head of Research and Policy at SDBTT, explains, “It is shocking to read the results of a survey showing that a quarter of young people with cancer visit the GPs four or more times before being referred to a specialist. This adds to the evidence suggesting that young people with brain tumours and other cancers could be diagnosed earlier, and highlights the importance of campaigns like HeadSmart. This is a campaign to promote awareness of brain tumour symptoms in children and young adults with the aim of reducing the time it takes for them to be diagnosed.”

Find out more about the Teenage Cancer Trust’s survey

Team SDBTT were out in force on Sunday 22nd April, coming together to cheer on our dedicated runners who, after months of training, hours spent cajoling generous friends for sponsorship and nights spent nursing sore feet, were finally ready to take on the London Marathon!

Team SDBTT had 78 runners, thanks to the crafty work of Debbie Daley who cleverly persuaded the Nestle Pure Life running team to fundraise for SDBTT, adding a further 50 runners to our enthusiastic team.

Those who would rather stand at the sidelines with a cup of coffee, headed to the SDBTT cheering spot where a rowdy bunch of staff and supporters looked out for our wonderful runners and made sure we cheered profusely for them all.

After our runners completed this amazing challenge, food and drinks were served at a post event which gave the runners a chance to catch up and compare those all important finishing times!

The day was truly inspiring and the SDBTT team all felt incredibly proud (and a little smug) to have such amazing supporters, both the runners and everyone who came along to cheer. As Lisa Heath, who ran the marathon for us sums up, ‘A day to remember. I am so pleased I saved myself for the London Marathon and that I ran for Samantha Dickson Brain Tumour Trust. The crowds were absolutely fantastic.’

If this has prompted you to don your running shoes for SDBTT,  whether it be a 10k run, half marathon or the London Marathon 2013, give Nina a shout at nking@sdbtt.co.uk or call 01252 749997.

Check out the finishing times of all our runners.

We are now looking to expand our activities with the help of a team of HeadSmart Community Champions. If you are just as passionate as we are about getting the HeadSmart message out to the wider public, then you could be just the person we are looking for to make a real and lasting difference to the lives of children and young people.

Read more about becoming a HeadSmart Community Champion

Professor Martin Taphoorn

Professor Martin Taphoorn has combined clinical work in The Hague with a professorship in neuro-oncology at the VU University Medical Center Amsterdam since 2007.

He is an active member of both the EORTC Brain Tumour Group and Quality of Life Group.

His research concentrates on quality of life and palliative care for brain tumour patients.

Professor Chris Twelves

Professor Chris Twelves is Professor of Clinical Cancer Pharmacology and Oncology, & Head, Clinical Cancer Research Groups, Leeds Institute of Molecular Medicine and St James’s Institute of Oncology

He Chaired the New Drug Development Group of the EORTC and has sat on the Feasibility Studies Committee and New Agents Committee of Cancer Research UK.

Professor Twelves is a medical oncologist with a particular interest in new drug development and clinical pharmacology; his clinical practice has been in colorectal and breast cancer.

Find out more about Professor Twelves on the University of Leeds and Institute of Cancer Therapeutics websites.

Professor Martin van den Bent

Professor Martin van den Bent works as a Consultant Neurologist and Professor of Neuro-oncology at the Daniel den Hoed Cancer Center and Erasmus University Hospital, Rotterdam, The Netherlands.

He is past chair of the EORTC Brain Tumour Group and has been a member of the SDBTT Scientific and Medical Advisory Board for several years.

His research interests include brain tumour clinical trials, prognostic markers in neurooncology and the genetic changes that occur in brain tumours.

Hannah Jones, who helps run the SDBTT Hannah Jones Fund, has not only raised £160,000 but has just been awarded the Rotarian Young Citizen Award.

In a recent BBC video, Hannah was filmed talking about been diagnosed with a brain tumour and the fundraising that she organises. This very wonderful video was picked up by Russell Howard’s Good News. Take a look yourself, Hannah appears at 26.30 minutes in.

Russell Howard’s Good News

Around 1,500 cancer patients a year will benefit from a cutting edge cancer treatment – Proton Beam Therapy – that will be available in London and Manchester, Health Secretary Andrew Lansley announced today.

Up to £250 million will be invested by the NHS in building Proton Beam Therapy facilities at The Christie NHS Foundation Trust hospital in Manchester and University College London Hospitals NHS Foundation Trust. The Department of Health have set aside public capital for this scheme.

Given the complex nature of the treatment and facilities, Proton Beam Therapy won’t be fully available in England until 2017. Until then, the NHS will continue to fund patients in need of Proton Beam Therapy to go abroad – either to Switzerland or the USA. By 2014/15 the NHS will be spending £30 million per year sending up to 400 patients overseas.

Read the full story here: http://mediacentre.dh.gov.uk/2012/04/05/centres-selected-to-host-cutting-edge-cancer-services/

The Christopher Clarke Cancer Research Fund (CCCRF) is joining forces with Samantha Dickson Brain Tumour Trust (SDBTT) in a bid to increase the research into brain tumours and reduce mortality rates. The merger was officially announced on 31st March at Hope Hospital in Manchester.

CCCRF was set up by Christopher’s mother, Karen Clarke, after her son tragically succumbed to a brain tumour in 2006, with the aim of reducing the number of deaths by brain cancers by funding research. In the six years since Christopher’s passing, CCCRF has raised a staggering £320,000.

Karen told us that “Towards the end of his life I made a pledge to Christopher to try to help research into this truly frightening disease, which took his life cruelly at such an early age. He was very keen to raise money to enable research into the causes and treatment of a disease which, though uncommon, strikes down young people like him more than any other cancer.” Karen made the choice to merge with SDBTT following thorough research into brain tumour charities, saying “We have chosen SDBTT because they are the leading brain tumour charity.  We know therefore that the funds we have raised will be invested in the very best, highest quality research in the UK.  We are looking forward to merging with them to work towards a way to stamp out this cruel and devastating disease.”

Sarah Lindell, CEO of SDBTT, who attended the event along with other senior staff of the charity and trustees of CCCRF, is pleased that the two charities are merging to create a strong market leader in brain tumour research. “We are honoured to be working with Karen and the Christopher Clarke Cancer Research Fund.  Karen, her family and friends have raised an incredible amount of money – over £320,000 to date, inspired by her son Christopher whom they sadly lost.  Brain tumours are the biggest cancer killer of children, more than leukaemia, yet woefully underfunded in comparison.  Together we can change this.”

Neil Dickson, Founder and Chair of SDBTT welcomes the merger. “We are only too aware of how losing a child to a brain tumour can turn your life upside down and the need to then do something so that other families don’t have to go through this.  So we know that together we can raise more to invest into research to find a cure for this devastating disease and save children’s lives in the future.We are pleased that CCCRF have chosen to put their trust in us, working with us to invest more into brain tumour research.”