Coalition of Brain Tumour Charities launches Manifesto at Houses of Parliament

14th October, 2010

The Brain Tumour Research umbrella charity, of which Brain Tumour Research Campaign is a founding member,  has joined forces with other brain tumour charities,  Brain Tumour UK and the Samantha Dickson Brain Tumour Trust, as well as the International Brain Tumour Alliance, to launch a manifesto for everyone  affected by a brain tumour.  We hope to persuade the new Government to work in partnership with us to improve outcomes in diagnosis, patient care and research.

The manifesto was presented by all the charities at a reception on October 14th, held to celebrate the re-launch of the All Party Parliamentary Group for Brain Tumours, under the chairmanship of James Arbuthnot MP.

National Press Release – 12.10.10

Manifesto

Royal Parks Half Marathon in aid of The George Pickard Fellowship
Sunday, 10th October 2010

George was 41 when he collapsed, on what seemed to be a normal day at the office. Scans revealed he had a malignant brain tumour and it quickly became apparent that he was suffering from a very aggressive form of the disease.  The Consultants all agreed that the tumour was inoperable, and the prognosis was poor.  George’s gruelling round of treatments started in September 2008; six weeks of radiotherapy, followed by ten months of chemotherapy, six of those months were combined with a brand new drug Avastin which really helped his quality of life.  The average life expectancy of a brain tumour patient is 14 months;  But George was able to live for nearly 18 months.  His strong constitution and the need to be with his three young children, wife, family and friends kept George fighting.  But sadly, despite his incredible courage and bravery, he died on 28th March 2010.

Throughout this time it became clear to us how little was known about George’s condition.  The consultants were often as baffled as we were about some of his symptoms. Some internet research led us to the startling realisation that there is little awareness of the disease and a serious lack of funding for research.  Currently Brain Tumour research receives only 0.7% of cancer research spending in the UK despite the fact that:

- Brain tumours are the most common cause of cancer death in children under the age of 15.
- More men under 45 and women under 35 die from brain tumour than any other cancer.

To that end we would like to create and fund a research fellowship in George’s name – The George Pickard Fellowship. This will allow research into brain tumours to take place at Imperial College Academic Health Science Centre at Charing Cross Hospital in London. It costs around £20,000 to undertake one year of research. The aim of the fellowship will be to fund this research for a minimum of three years, which we will do through the Brain Tumour Research Campaign and BrainsTrust.

Maybe, one day, someone diagnosed with George’s condition will be able to survive.  We are therefore asking you to contribute to a fund to be created in George’s name.

Royal Parks Half Marathon – 10 October 2010 – George’s Birthday Run
www.royalparkshalf.com

To kick start the fund raising a large group of George’s friends and family will be running the Royal Parks Half Marathon which coincidentally would have been his birthday! As you can see from the list attached this includes his wife, a brother, nephews, a niece and a number of Godparents of their children. We are all running in aid of George’s Fellowship. George Pickard Fellowship – Runners

How to give: http://www.justgiving.com/The-George-Pickard-Fellowship
Or send cheque made payable to “Brainstrust – George Pickard”
to: Paul Harwood, Centro Commercial Limited, Mid-Day Court, 30 Brighton Road, Sutton, Surrey SM2 5BN

Big Wight Matter 2010

24th – 26th September, 2010

Big  Wight Matter: for the second year, the Brain Tumour Research charities combined forces to meet on the Isle of Wight for a weekend of fun, fundraising and walking around the island on the Big Wight Matter – see http://bigwightmatter.brainstrust.org.uk/  for further information.

Although we weren’t able to attend the event ourselves this year, fellow brain tumour charity colleague Sue Farrington Smith from Brain Tumour Research wrote about the weekend:

Well done Helen and team at brainstrust for organising the event again this year, which was attended by 65 supporters.  

I know it is quite a long journey but it really feels like a great break and the children love it.

 We got there about 8pm on the Friday had BBQ sausage and burgers, drinks in the beer tent, great company and great music to accompany us.

 People stayed in family rooms, tents and caravans as well as some chalets – although there aren’t many of those

 On the Saturday we all had a great cooked breakfast and those that were doing the 15 mile walk set off at 10am, those of us doing the 6 mile set off at 10.45

 The views along the cliff top walks are just stunning and it is fantastic to be by the sea

 We stopped for 90 minutes at a great pub half way for lunch and then walked back to be met by ice cream and then tea and cakes

 The children couldn’t wait to get in to the heated swimming pool – don’t know where they get their energy from and swam from 4 until 5.30

 Then a freshen up and back to the beer tent for more drinkies and a fantastic hog roast with apple sauce, coleslaw and salad

 Helen’s team organised a raffle, an auction and a quiz night as well as some ceilidh dancing which everyone really enjoyed (whether joining in or watching)

 We all went to bed tired and happy and slept very well

 This morning we had another great cooked breakfast and then people either left for their journey home or continued for a shorter walk in the morning

Well done again to everyone!

Here are some links so you can see what you missed!

http://picasaweb.google.co.uk/jamesjoshuahill/BigWightMatter2010?feat=email#

http://brainstrust.org.uk/news-detail.php?id=180

Sara and Mike Porley’s Great North Run

19th September, 2010

Sara and Mike Porley ran the Great North Run on September 19th in memory of Sara’s father who died from a brain tumour in his early forties.

“We had a great day, 2hrs 18 mins for Mike and 2hrs 42 for me.  I was just really happy to get round this year as I didn’t get the training in I was hoping” said Sara

http://www.justgiving.com/saraporley

Lynsey & Philip Stephenson’s Robin Hood Marathon & Great North Run

September 2010

Lynsey and Philip Stephenson decided to run in 2 separate half-marathons, 1 week apart – Lynsey ran in the Robin Hood half-marathon on September 12th and husband Philip ran the Great North Run on September 19th.

Phil had surgery to remove part of a Grade 4 GBM in 2007 but is still a keen runner and participates in as many runs as possible: “ I enjoyed the run and the cool/wet weather made it better.  I finished in 1hr 28mins 28seconds” says Phil.

Karolina Janczar, the first PhD student that BTRC funded, graduated summer 2010 – here is her story …

I joined the BTRC research team in January 2007 as a PhD student, following my pre-registration medical training in Poland where I originally graduated in 2005.

I was working under the supervision of Dr Federico Roncaroli at the Neuropathology Unit located in the Charing Cross Hospital, Imperial College London. Subsequently, while the John Fulcher Molecular Neuro-oncology Laboratory gained its current shape and pace,  I also had the opportunity to work with Dr Nelofer Syed who joined the group, having previously had extensive experience in cancer epigenetics. I was consequently in a unique position as I could benefit from the clinical knowledge of Dr Roncaroli and scientific expertise of Dr Syed, while trying to decipher the role and regulation of translocator protein (TSPO) in human gliomas. Currently, we believe TSPO levels might help to pre-operatively distinguish glioma subtypes of different prognosis. Further, my research shed some light on the significance of other proteins associated with mitochondria and linked to cellular metabolism in glioma, The results of this work funded by BTRC were presented during scientific neuro-oncology meetings in the UK and USA.

In April 2010 I submitted my thesis on “The Mitochondrial Translocator Protein in Human Gliomas” which was then examined by Professor Geoffrey Pilkington (University of Portsmouth) and Dr Paolo Muraro (Imperial College London). I successfully defended my thesis during the viva and was awarded a PhD title.