Who do you think we are?

Brain Tumour UK [1] today paid tribute to Senator Edward M. Kennedy, who died from a brain tumour last night aged 77.

Jenny Baker OBE [2], chief executive of Brain Tumour UK, commented: "Being diagnosed with a brain tumour can be devastating, yet every year thousands [3] of people respond to this diagnosis with great dignity. Senator Kennedy was just such an example.

"Following his diagnosis in May 2008, Senator Kennedy had access to the best treatments the world has to offer [4]. Sadly, the suddenness of his passing illustrates how far we have still to go in finding better therapies for brain tumours. Through increasing scientific collaboration, across Europe and the United States in particular, we are finding more effective treatments to help people live a better quality of life for longer [5]. Our ultimate vision is of a world free of the fear of brain tumours. Every day, each new person who comes to us for support and information inspires us to work harder to achieve that vision."

1. Brain Tumour UK is the UK’s leading, caring charity committed to fighting brain tumours by providing support, funding research and raising awareness. Our vision is a future free from the fear of brain tumours.

2. Jenny Baker OBE lost her 24 year-old son, Stephen, to a brain tumour in 2004.

3. Brain Tumour UK's research has shown that around 16,000 people are diagnosed with a primary brain tumour in the UK each year. Around 4,500 people will be diagnosed with a malignant tumour, the most common of which is glioblastoma multiforme. Even benign and low-grade brain tumours can cause permanent damage or even be fatal. 

4. Wherever possible, high grade brain tumours will be removed by surgery. In suitable cases, wafers of the gliadel chemotherapy will be inserted into the tumour cavity. The remainder of the tumour will be treated with concomitant (simultaneous) radiotherapy and chemotherapy (temozolomide), and adjuvant (follow-up) chemotherapy (temozolomide).

5. Emerging therapies include:

- Anti-angiogenic therapies: interfere with the growth of blood vessels associated with tumour growth. Drugs include Avastin and Thalidomide.

- Cell division therapies: interfere with cancer cell division. Drugs include CPT-11 (variously called Irinotecan and Camptosar).

- Vaccine therapies: the patient’s own cancer cells are removed and killed with radiation to create a vaccine with the aim of creating an immune response to the cancer.

- Viral therapies: a neutralised virus such as herpes is injected into the tumour. A few days later, the tumour is treated with an anti-herpes drug to kill the tumour cells ‘betrayed’ by the virus inside them.

Our Patron Phil Tufnell stars in Strictly Come Dancing

Don't forget to back Phil and Katya with your votes in Strictly!

Brain Tumour UK Patron and renowned spin bowler Phil Tufnell is to star in the BBC's seventh Strictly Come Dancing series from September. He'll be dancing with Katya Virshilas who trained Richard Gere and Jennifer Lopez for the film Shall We Dance. This is her first appearance in Strictly, so the duo will face strong competition.

If you're a Strictly fan, do take every opportunity you can to vote for Phil and keep him in the show: Phil has promised to get us all the publicity he can for its duration, to help raise awareness of brain tumours. You can keep tabs on his progress in the show here. [link to http://www.bbc.co.uk/strictlycomedancing/]

Brain Tumour UK has welcomed the Government's announcement that a specialist proton therapy centre is to be built in the UK over the next five years to treat brain and spinal chord tumours [1]. But the charity warned that the centres should be the focus of carefully designed scientific research to ensure that the true benefits of the therapy are measured. Furthermore, the therapy will not be of benefit to the most common brain tumours, including gliomas, meningiomas and secondary brain cancer. It will largely be used to treat rare tumours at the base of the skull, including chordomas and chondrosarcomas.

Booking forms for Brain Tumour UK's hugely popular, annual patient and carer conference are now available online. To find out more about this special event, please visit http://www.braintumouruk.org.uk/aboutus06-conference.htm today. We promise a warm welcome for all and look forward to seeing you there...

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We have a very exciting agenda, including:....

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Professor David MacDonald, Associate Professor of Neurology at the University of Western Ontario, Canada, providing an exciting perspective on research in Canada and the United States.....

Other experts join us from Weston Park Hospital, Sheffield; University of Oxford; Royal Free, Royal Marsden and University College Hospitals, London; SW London Cancer Network; MacMillan Cancer Relief; and CLIC Sargent.....

Tuesday 7 July, 12pm—5.30pm....

• Understanding tumour types....

• Any questions? Your brain tumour questions and concerns answered by our expert team....

• Improving outcomes for brain tumour patients....

• Improving lives and maximising survivorship in partnership with Macmillan....

• Inspiring people – patients & carers tell their stories....

Evening and overnight....

• Join our relaxed evening for all with dinner in the comfort of the hotel’s Bramblings Restaurant....

• Stay overnight in comfort at the Four Star Abbey Hotel Golf and Country Club [http://www.theabbeyhotel.co.uk/]....

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Wednesday 8 July, 9am—4.15pm....

• New developments in treating brain tumours in Canada and the United States....

• Any questions? – more time with our expert team....

• Proton therapy and brain tumours....

• Delivering care beyond hospital – developing a clinical care pathway for brain tumour patients....

• Clinical trials in the UK – an update on the latest research....

• Sharing the caring, with workshops on:....

– caring for children with brain tumours....

– care for young adults with brain tumours....

– complementary therapies and end of life care....

• Proton vs other therapy – a debate and audience vote on the motion: "This house believes that the NHS should build 12 proton beam therapy centres in the UK."....

In a new report, published on 18 March 2009 to mark Brain Tumour Awareness Month, Brain Tumour UK warns that thousands of patients each year are getting inadequate care because no budget or infrastructure exists to meet their needs, particularly at local level. Furthermore, research into brain tumours is woefully under-funded because they are perceived to be 'rare'.

Brain Tumour UK is calling on the respective governments and health services across the UK to ensure that all brain tumours are recorded in the official statistics by the end of 2009, so that effective care can be planned and delivered.

'Brain tumours, by virtue of their dangerous location, can impact on every characteristic that defines us as human beings,' says the charity's chief executive, Jenny Baker OBE.

'It is scandalous that thousands of people, many of them suffering very substantial cognitive and physical impairments as a result of their tumour, are largely overlooked because health services have not recognised their existence and complex needs.'

For more information and to download a copy of our report, visit http://www.braintumouruk.org.uk

This week, Brain Tumour UK needs your help with some publicity.  We're revealing that thousands of brain tumour patients are missing from official statistics.  And because they're missing, adequate health services are not being provided for them.  Local media are looking for people whose stories can illustrate our campaign.  If you'd like to help, please email Trevor Lawson, Head of Communication, with your name, location and contact details (including a mobile, if you have one) and a brief summary of your story.  We're particularly interested to hear from patients and carers who have found that there is a very poor level of health care beyond hospital.  And we're interested in hearing from people who have been affected by "benign" tumours such as meningiomas and found that rehabilitation or support is non-existent or difficult to find.  Please email Trevor as soon as possible at trevor.lawson@braintumouruk.org.uk   Many thanks for your help.

• Around 13.000 people of all ages are diagnosed with a brain tumour each year in the UK
• Around 5000 of these are cases of primary brain tumours
• The incidence of brain tumours has increased by approximately 10% over the decade 1991-2000
• Brain tumours are the fastest growing cause of cancer death among those over the age of 65
• Brain tumours are the most common type of solid tumour in children

• Childhood cancers are the main cause of death in children after accidents, with brain tumours accounting for 30% of these deaths
• Over 100 children with brain tumours die each year in the UK
• The cure rate for most malignant brain tumours is significantly lower than that for most other cancers
• Average life expectancy for an adult with a malignant brain tumour is around three months without treatment and, with a combination of radiotherapy and chemotherapy, 12-18 months
• Survival of patients with brain tumours has not improved over the last 15 years compared to most other common cancers
• Effective treatment is complicated by the cellular complexity of the brain, the different types of brain tumour and the fact that the brain is protected by a special tissue, the blood-brain barrier
• Brain tumours cannot be prevented because their cause is unknown. No changes in lifestyle have been shown to reduce the risk
• Brain tumour research is grossly under-funded and urgently needed both into the treatment and the causes of these tumours
• Brain tumour patients rank highest for the burden of cancer to the individual patient, as measured by average years of life lost
• Brain Tumours are a " Cinderella Cancer" with very low research spending
• Patients who survive a brain tumour are frequently left in poor health with long term disabling affects
• Brain tumours present themselves in different ways with a diverse range of symptoms; delays in diagnosis and treatment happen on a regular basis
• The public, in general, is unaware of the incidence and impact of the condition
• The impact of both benign and malignant brain tumours can be profound affecting thought, emotion and physical function
• Support for those affected is fragmented and inadequate

These figures come from information on the Cancer Research UK website which has the most up to date UK data http://www.cancerresearchuk.org/ also published in a Cancer Stats Monograph 2004 which came out in January 2005.