Josie Phillips with her husband Roger are sailing their Contessa32, Nordlys , around Britain to raise funds and awareness for Brain Tumour charities and to complete a great personal challenge.

Josie was diagnosed with a low grade brain tumour in 2004 but in 2008 after three operations they discovered it had progressed to grade 4 (malignant). Since then Josie has been treated with radiotherapy and chemotherapy as well as developing an infection which led to yet another operation and she is now without a section of skull.

The length of Josie’s life is rather uncertain but one thing is for sure – She is determined to live it and enjoy it.

In 2007, Brain tumours killed 3611 people, many of whom were children, or young adults like Josie. When compared with other cancers such as leukaemia and breast cancer, funds for brain tumour research are seriously lacking. In the UK more children and people under the age of 40 die of a brain tumour than any other cancer – yet brain tumour research is woefully under-funded.

Very little is known about the cause of primary brain tumours and there is no cure. More funding is needed to enable research to help find better treatments for this horrible disease.

Average survival for people with brain cancer like Jose’s is between just 9 months and 2 years.

With a passion for living made stronger with each challenge and adventure, Josie intends to beat the statistics and keep living.

In her own words “Sailing Round Britain is a great personal challenge for me and will never take me far from medical help should I need it. It will also give us the opportunity to see lots of our friends along the way and hopefully make new ones too!”

You can learn more Josie and Roger and follow them round the UK at www.contessa32.co.uk.

After a brief introduction from BTA there were talks on a range of subjects including ‘Distress and Depression in Glioma Patients’ by Dr. Alasdair Rooney and ‘Managing Seizures’ by Yvonne Leavy. Dr. Julie Read talked about the problems of diagnosis and recognition of symptoms which, because she was speaking both as GP and Carer, gave her observations an extra authority. Prof. Ian Whittle discussed different surgical interventions and Dr. Zoe Morris gave a detailed analysis of neuro-oncology imaging. Andrew Anderson from the Maggie’s Centre illustrated “Difficult Situations and Questions” while Dr. Simon Kerrigan considered cognition in patients with brain tumours.

It is hoped that this worthwhile event can be repeated in other parts of the UK since this is a disease that requires expert knowledge at all levels, from diagnosis to treatment and care. Brain Tumour Action is delighted to be able to assist in this practical way.

Kane Gorny was diagnosed with a brain tumour last year and was admitted to St. George’s Hospital for further treatment when the drugs he had to take weakened his hip bone.

Two days after the hip operation, having been denied essential medication, he became severely dehydrated but his requests for water were refused. Bedridden and confused, he still managed to ring the police for help.

Very sadly it was too late. His mother said: “I told three nurses there was something wrong with my son and they said “he’s fine” and walked off.”

Kane died shortly afterwards.

St. George’s Hospital has apologised and says it has introduced new procedures to ensure such a failure can not happen again.

However the MetropolitanPolice have been requested to investiage his death after the case was referred by Westminster Coroner’s Court.

Taken from Mail Online – The Daily Mail, March,2010.

March is Brain Tumours Awareness Month, and BTA is getting off to a grand start with our Fashion Show at Leighton Buzzard Golf Club on the evening of Friday 5th March. Organized by BTA’s Home Counties Representative Nicole Witts and her team of volunteers, the show features fashion from Daisie Lane, make-up demonstrations from Clarins, styling by Sculptors and a display of lingerie!

The occasion sold out within days, and is being supported by Andrew Selous MP, Leighton Buzzard TV, Essentials Beauty, St Jude’s Clinic, Lloyds Skincare and Makeup and guests will be entertained by 2008 X Factor contestants Ladies With Soul.

Thanks go to Michelle Cottingham, everyone at Leighton Buzzard Golf Club, and Lincoln Design and Print.

"Wear A Hat To Work" in March 2010 and raise money for research

Brain Tumour Action is partnering with the umbrella group charity Brain Tumour Research and other member charities to use the month of March 2010 to raise awareness and funds for brain tumour charities.  We are hoping that everyone will join us to wear a hat on a date in March and help us with this campaign.

The impossible can be achieved

In the UK, five year survival for leukaemia is now 80% compared to 20% thirty years ago and in most cases there is a cure.  This is because of the sterling work done by charities such as Children with Leukaemia and Leukaemia Research with the support of celebrities like Gary Lineker to raise awareness and funds for research into leukaemia.  The impossible has happened, families are seeing loved ones beat the disease and live much longer than they would have ever dreamed possible.

Brain tumours are sometimes called a Cinderella disease, because so little is known about them.  This means they are also forgotten when it comes to allocating funds for research.  Yet, more children and people under the age of 40 die of a brain tumour than leukaemia or any other cancer and five year survival is still only 14%.

Can you help?

Would you, your workplace, club or organization consider having a ‘wear a hat’ day to help us with our brain tumour awareness month in March?  Would you consider asking people to wear a hat and bring in a pound or two on any day in March to suit you?  If you want to do more than this we would be delighted.  Here are links to four posters and a guide to running your Wear A Hat Day:

Poster One

Poster Two

Poster Three

Poster Four

Guide To Running Your Own Wear A Hat Day

Please note that Poster One and Poster Two are intended for use in schools, and Posters Three and Four are designed for the workplace.

Monies raised will be split between Brain Tumour Action and Brain Tumour Research.  Cheques to be made payable to Brain Tumour Action (we will forward monies to Brain Tumour Research).

If you can help in this way we would also love you to send any photos from the day to upload to our website.  Please contact me on administrator@braintumouraction.org.uk

Carly Hornbuckle was told four-year-old daughter Bella Flint’s condition was nothing serious. But the worried 25-year-old did her homework online and realised Bella could be suffering from a brain tumour. After finally convincing doctors of the seriousness of her condition, a brain scan revealed a tumour the size of a golf ball. Bella was suffering from Medulloblastoma – a brain tumour found in the cerebellum, which controls movement and balance.

There are two issues here that will be familiar to parents of children with brain tumours:

1. Many GPs come across brain tumours rarely, if at all.
2. Informed parents face an uphill struggle to convince medical professionals that their concerns are valid and ought to be listened to.

Bella Flint’s mother did the most important thing of all – keep going. Bella’s scans revealed the truth about her illness, but getting that far took persistence and the courage to seek a second opinion: that all-important second opinion secured Bella’s referral to Leicester Royal Infirmary for tests, and, ultimately, the scans.

You can read more about Bella and Carly’s experiences, and keep up to date with her condition, at the Tinkerbella’s Wishes website.

When you search the Web with easysearch instead of Google or any other search engine, you’ll raise funds for us with every search you make. It’s completely free to use and if you make just 10 searches a day, you could raise around £20 a year for us, just by searching with easysearch. That’s right! Simply search the Web and raise funds – what could be easier?

What’s more, easysearch is a ’super’ search engine that combines the strengths of several search providers together – Yahoo!, Ask.com, Bing and many more. This unique approach to searching means that easysearch can track down the most relevant and accurate results from across the Web, so you’ll find what you’re looking for quickly and easily every time – all in one ‘easy’ search.

It is such a simple way to raise funds for us so please set our unique easysearch page – http://bta.easysearch.org.uk – as your homepage and use it every time you search the Web. Please spread the word to your family and friends and ask them to support us too.

Or just use the search box in the right-hand sidebar every time you visit our site.

It’s completely FREE to register and you won’t pay a penny more for your shopping when you use the easyfundraising site. In fact you can even SAVE MONEY as many retailers give discounts, special offers and even ‘e-vouchers’ exclusive to Easyfundraising.

You can shop for holidays, flights, electronics, mobile phones, computing equipment, food, wine, pet supplies, finance, insurance and much more – and every purchase you make will raise funds for us at absolutely no cost to you!

All you need to do is register for free at http://www.easyfundraising.org.uk/bta and use easyfundraising every time you shop online.

S3M-5082 Dr Richard Simpson: International Brain Tumour Awareness Week and World Walk—That the Parliament notes that 1 to 7 November 2009 is International Brain Tumour Awareness Week; recognises the work in Scotland in developing the managed care network; congratulates the record number of 176 brain tumour and cancer-related organisations that have supported the International Brain Tumour Alliance’s week and walk this year, and also notes that, with dozens of events planned and a combined total of 150,598 walking kilometres achieved to date, they are in sight of the World Walk target of 200,000 kilometres, equivalent to going round the world at the equator five times.

Topics to be examined include:

• cancer stem cells
• the origins of astrocytomas
• molecular and imaging biomarkers
• the development of new treatments
• advances in radiotherapy and radiobiology
• the management of cerebral metastatic disease
• advances in paediatric neuro-oncology
• developments from the NICE Improving Outcomes document

Key advances in research and treatment of brain tumours