brainstrust newsletter

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what’s inside H Helping more m people p


brainstrust – The Meg Jones brain cancer charity

P Peter Black B iin Hull

E Evan Davis rruns for ffun


Dear Supporter


ELLO AND WELCOME TO OUR 3RD ANNUAL UPDATE. Some things haven’t changed since our last newsletter. There are still over 120 different types of brain tumour and thousands of men, women and children living with brain cancer in the UK today. More children die of brain cancer than any other illness in the UK and it is the most common form of cancer in people under 40. Yet, clinical care for sufferers and their families still remains disorganised, under-funded and sporadic. Having had first hand experience of dealing with brain cancer, we are passionate about giving every brain cancer sufferer, and their carer, the benefit of 24/7 support. We’re also the only charity dedicated to providing help and advice at the point of diagnosis – where it’s needed most.



Some highlights for us this year include a nomination at the Wessex Charity Awards, our sponsorship of the key note address by Peter Black at the British Neuro Oncology Society’s (BNOS) annual event, our involvement with the NHS ‘safe and sustainable’ review of paediatric neurosurgery, and most importantly of all, the opportunity to use our experiences to help literally hundreds of patients and their carers across the country. Brain cancer is something that could affect any one of us, but with your ongoing support, no matter how small, we can, and will, beat it. Thank you.

Meg x

So, what’s changed? To be honest, very little has changed, other than we have a better understanding of the situation for brain cancer patients and their carers. And the understanding is that the situation is as grave as ever, phone: 01983 292 405


We’ve already achieved a great deal, and with your ongoing help we can help improve the treatment, care and outcomes of every patient diagnosed with a brain tumour.

How we’ve helped T’S BEEN A BUSY YEAR FOR BRAINSTRUST. We’re now helping over 200 brain cancer patients and/or their carers, from all over the country. A big leap from the lowly little charity we all stepped out to form 3 years ago!

A celebration of tea o

did you know? Brain cancer is the most common form of cancer in people under 40 and it kills more children than any other illness in the UK

with more people under the age of 40 dying from brain cancer than any other cancer. Worryingly incidence of brain cancer is increasing 2% year on year, and despite this, research is still desperately under funded and the pathway for patients having been diagnosed with brain cancer is not always clear or direct. Continued on page 2...

Logbook ...continued from page 1

How are we helping more people? We’ve come a long way in the past 3 years, but for this to happen, we’ve deliberately kept some key things the same. Our kettle is always on; we still spend a lot of time on the phone talking with, and listening to, people. Though rather than being on the phone to Meg, like we were 2 years ago, helping her navigate her way around uni, we’re talking to patients across the country, and relaying their stories to our advisors. We’re talking to researchers, we’re talking to counsellors, and we’re talking to hospitals, nurses, doctors, surgeons and other patients, all so that we can be the lynch pin that we set out to be. The big difference is that now, it’s not just for Meg; it’s for everyone that’s picked up the phone and cried for help. And for all those people that we know will be picking up the phone in 2010, 2011, 2012... We’re also finding that it doesn’t have to stop at a conversation. As we grow, and more people support us, we can do more for our big family of patients and carers. What follows are some of the specific support initiatives that we’ve launched, or are planning to get out this year, and all thanks to your help! did you know? It is possible for brain cancer patients to be liaising with up to 15 different people at any one time during their journey through the healthcare system


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Have you lost your way?


HIS AUTUMN we distributed thousands of copies of our first support booklet, ‘Have you lost your way?’ to Macmillan centres and neuro-oncology and neuro-surgical specialists across the country. The little pink book has already heralded such comments as:

❝What a great booklet.

For the first time I feel I have some control back in our lives.❞ There are recommendations, and expectations that in a few years’ time the care of all patients with brain tumours will be co-ordinated through a model of multidisciplinary assessment and care. However, our patients

and their supporters need help today, they need help here and they need it now. We find increasingly that we’re helping people to manage their ‘care pathway’, so we wrote this book to help do just that! The pocket-sized book is just 20 pages long, but contains vital information detailing who patients will be talking to on their journey, when, and why. In the back is a section where patients or their carers can write the contact information of everyone that they’ll meet, making the little pink book both a vital resource and an indispensable list of contacts. If you would like a copy of the booklet, give us a call on

01983 292 405 or download a copy at advice-resources/

University of Birmingham research news In 2009 brainstrust supported a study into the reasons behind the observed disparity in survival rates of brain cancer patients in the UK and Europe. Ammar Natalwala and Viren Bharkhada from the University of Birmingham undertook the brainstrust funded research. The pair focussed on patients diagnosed with Glioblastoma Multiforme (GBM), and set out to investigate why UK patients diagnosed with GBM may face poorer survival rates than those in Europe. A gap initially highlighted by the EUROCARE study group. Ammar and Viren investigated reasons for delays in initial presentation to a medical professional to definitive diagnosis of GBM, given that earlier diagnosis leads to an improvement in outcome for these patients. They compared data from neurosurgical centres in Birmingham, UK and Strasbourg, France. It is believed that the results of this study may highlight reasons for the observed disparity in cancer survival in the UK and France, allowing the healthcare service to to target areas for improvement, resulting in better outcomes for patients with GBM. The abstract for this work was submitted to the World Congress of Neurological Surgery at the end of August 2009, and was well received.


ISSU E 3: MARC H 2010

in the words of others...


S MORE PEOPLE HEAR ABOUT US, WE FIND, SADLY, WE’RE MEETING MORE PATIENTS. However, it is rarely the case that we can’t do anything to help someone who’s called us. From just listening, to proactively coordinating a programme of support for our patients, and often their families, there are all sorts of things we can be doing to help people look brain cancer in the eye. On the right are some of the lovely things that people have said about us since our last newsletter.

❝Thank you, thank you,

thank you a million, brainstrust. It’s like a rollercoaster! I’m trying not to get excited but it’s hard not to smile at the first bit of potentially good news in 2 weeks. Your website and support is amazing and without you I’d be lying on an operating table at this precise moment... I can’t ever thank you enough.❞

❝I’ve just spent all night

reading your website and your blog and I have to say thank you... It made me feel hopeful and inspired for the first time since Wednesday.❞ Chris Isle of Man June 2009

❝We had nothing on the table two weeks ago; now we have two options for my dad. Thank you!❞ Ian Worksop, August 2009

Cathy Manchester, July 2009

❝I am sat here crying

because your support means so much to me.❞ Helen Hull, August 2009

And it’s you that has helped us to that make such differences to people’s lives at a very difficult time. Without your help, we wouldn’t have been able to help these people, so thank you.

Our new website


NOTHER BIG COUP FOR BRAINSTRUST THIS YEAR HAS BEEN OUR NEW WEBSITE. The all-new site not only shows a newer, fresher face, but also gives our visitors a series of clear choices – offering content that reflects what people are searching for online. Be it advice, information and support for brain cancer patients and their carers, or hints and tips on how to run a successful fundraising campaign, it’s all there – why not see for yourself and pay us a visit at Since the site launched in July, we’ve had some great feedback, and have been nominated for not one, but THREE Hantsweb awards. Fingers crossed we pick up a gong or two.

Please do keep checking the site for regular news stories, opinion pieces on our blog and the latest on all our upcoming events. 3


ISSU E 3 : MARC H 2010

Our support S

Some important connections

O WITH 2009’S SUPPORT PROJECTS UP AND RUNNING, and the phones ringing off the hook, it’s high time to look at what’s in store for 2010.

Meet up groups At brainstrust we know that you don’t just have a brain tumour at 7pm on a Thursday evening, and whether you have a brain tumour or are helping someone who is poorly, not everyone wants to talk about what they’re going through in the same way. These are a couple of reasons why we don’t run support groups per se. Instead, we are always on hand to talk to patients and carers over the phone, by email, and face-to-face 24/7, 7 days a week.

However, we’ve been thinking; whilst our approach is well received, and it means we can keep things personal, it would be great get to know our patients and their carers a bit better. It might also be nice for them to get to know each other better too. So, we’ve decided to organise some patient and carer ‘meet ups’. Now these aren’t your typical support groups; there won’t be a counsellor on hand, nor will we ask everyone to sit in a circle. However, there may be a glass of vino and a pizza or two involved, and of course people can share information and find mutual support if they want, but the primary objective will be to say ‘hi’ and most importantly of all, to have some fun. 4

Visit brainstrust to register for this programme of events. There’ll be a meetup near you soon!’

Brain Box The first of this year’s exciting initiatives will be the launch of our brainstrust brain box. From March this year, every patient that calls for help will be sent a brain box, and in the box will be some great tools to help people with brain cancer to cope with their diagnosis and to navigate their journey. Contents include our new support folder, which will offer patients useful information, as well as structured spaces to record notes from their appointments, jot down contact details, write down the questions that pop into their heads during those sleepless nights and much, much more. A copy of Peter Black’s ‘Living with a Brain Tumor’ will find it’s way into the box for those that want it, as will a copy of the ‘Have you lost your way?’ booklet. On a lighter note, the brainstrust mascot, our red crochet elephant will be tucked up safely inside the box, along with some teabags from the lovely people at ‘Make Mine a Builders’.

Turn to page 8 to get your hands on one of our lovely elephants

This year’s British Neuro Oncology Society (BNOS) event saw brainstrust venture north to Hull. We made sure that our presence didn’t go unnoticed and we sponsored the keynote address. Peter Black, president elect to the World Congress of Neurosurgeons and brainstrust’s patron, flew all the way from Boston and then found his way to a podium in Hull, where he updated the audience on the current developments in the brain cancer world. He gave his view on a more hopeful future of the world of brain cancer. And as a reward he was introduced to some local brews.

Peter Black speaking at the 2009 BNOS event

brainstrust has been building its presence in other ways too. We are working hard to make sure that our patient and carer voices are heard in relevant places. We are now part of the NCRI workstream for Clinical and Translational Radiotherapy. Radiotherapy as a treatment option is not going out of fashion and this is a key area on the brink of major developments so brainstrust is well positioned to keep our stakeholders informed. We are a member of the steering group for the ‘Safe and Sustainable’ review of paediatric neurosurgical services and have some ideas and opportunities that we are currently working on. Our presence in the All Party Parliamentary Group for brain cancer continues (an interesting road ahead with the General Election approaching) and our membership of various organisations means that we are able to keep abreast of the latest developments in brain cancer, both nationally and internationally.


ISSU E 3: MARC H 2010

Your support S

O ENOUGH ABOUT US, AND OVER TO YOU. This year has only been so great for brainstrust because of everything you’ve done to help. So thank you. Thank you and thank you again. In case you missed any of it, or should you want to rekindle some great memories… read on.

Summer Ball

4th Plinth

This year the brainstrust summer ball returned to the prestigious Highclere Castle. The 2009 event was a huge success for brainstrust, not least because everyone had such a fantastic time. The Legends of Motown serenaded our guests in Highclere’s fabulous reception hall, the wine flowed, the food was fantastic, and the auction, that included such wonderful things as an original Renoir, a weekend in a Scottish castle, a stay in a Park Lane hotel and a toy dumper truck, raised lots of money to help people with brain cancer. Lovely stuff.

Lizzie Hudson from Ipswich entered the draw to take part in Anthony Gormley’s ‘One & Other’ project, and won the chance to appear on the 4th plinth in Trafalgar Square for an hour. More still, she devoted her time on the plinth to brainstrust and our battle against brain cancer, raising a fantastic £830 for charity. The ‘One & Other’ project gave people the chance to occupy the empty Fourth Plinth in Trafalgar Square in London for an hour at a time, giving the public access to a space normally reserved for statues of Kings and Generals. Gormley’s idea is that successful applicants then become an image of themselves, and a representation of the whole of humanity. Every hour, 24 hours a day, for 100 days without a break, a different person made the Plinth their own, including Lizzie. Lizzie, 26, stated “I wanted to do something useful with my time, so decided to raise money for this much deserving charity”. And she put her time on the plinth to good use, making the longest paper chain she could, racing to make it nearly reach the ground before her hour was up.

Royal Parks Half Marathon Building on the success of last year’s Royal Parks Half Marathon, we had 100 runners flying the flag for brainstrust this year. The turnout was amazing and the success of this event just reflects our ethos that we’re none of us as smart as all of us. Together our team has raised nearly £40,000. WOW! Highlights included the fantastic atmosphere around our stand in the charities’ tent, and the jubilant faces of the team brainstrust runners, amongst whom was Evan Davis of Dragon’s Den fame, and the voice of Radio 4’s Today programme. The 2010 Royal Parks Half Marathon is on Sunday 10th October. Email Tessa on, or call 07948 400329 to reserve your place with team brainstrust now. You can find our more about our upcoming running events at runningforcharity

Again, a real highlight was the fireworks display put on by Pains Fireworks. Words can’t do the wonderful spectacle justice. Nor for that matter can our pictures. Drat. A HUGE thank you to everyone who came and contributed to such a memorable evening. 5


ISSU E 3 : MARC H 2010

We caught up with Lisa Connell brainstrust supporter and brain tumour patient Lisa Connell’s company Rent a Date for Charity is re-launching with a brand new website. We caught up with Lisa to talk about her plans for the launch: The site will feature new, big-name celebrities, in association with Paramount Pictures. Lisa’s confident that the launch will be a major success. As part of the launch RAD4C is holding the Inspiration Ball, on 31st March. The aim of the ball is to mark Brain Tumour Awareness Month, introduce new celebrities to the cause and, of course, benefit brainstrust. RAD4C has also partnered with Planet Party Planners to bring you Guardian Angel Events. The events have a fun and unique theme, including a new range of fancy dress costumes. 10% of the proceeds from the costume sales will go to brainstrust and, with every costume purchased, the buyer will receive a “Golden Voucher” offering free entry at any one of the upcoming events. See for more details.

Steve’s channel swim In August 2009 Steve McMenamin swam to Calais and raised nearly £3000 for brainstrust. Steve took on the ‘Everest of openwater swimming’. And it was a very tough swim, with tides and currents making 21 miles across ‘as the crow flies’ into a good 30. It was physically and mentally challenging, dodging the 600 ships and 80 ferries which travel the Dover straits every day, as well as jellyfish, big waves and winds. The swim started at 12.45am and took a respectable (but no-doubt torturous) 13 hours 18 mins.

Steve helps us put the challenge into perspective: “On your day, in the dark, in the middle of the ocean, you can find out what kind of man you are – the one who quits or the one who swims. It would be so easy to quit. All I need to do is reach out and touch the boat, then it will all be over. I could climb aboard, put on some warm clothes and have a hot drink. But to swim on in the dark with my imagination going wild, motion sickness taking its toll, shivering uncontrollably with the cold, and depleted energy stores making my body desperately scavenge for more, what reason is there to continue? Then I remember the cause; the money we are raising for brainstrust and I notice that the sun is rising, the ocean is calming. That’s it, I’m a swimmer. Life is good.”

If reading this makes you think a personal challenge is in order, then why not visit our new team brainstrust page, Here you can find out how to take part in exciting events like a 2 day walk along the Jurassic coast, or a bike ride from Paris to Geneva, and you will also be able to find out about all the other fab sporting events we’ll be attending in 2010.


Teafest On Tuesday 17th November, we asked the world to join us in a celebration of Tea. How? Well, with there being so many great ways of enjoying the traditions of a cuppa char we thought we would leave what people did up to... them. Cakes were baked, tea cosies worn on heads and tea spilt everywhere in celebration of the brown stuff, with highlights of the day including the creative department at communications agency, brahm, asking for sponsorship in return for doing the office tea round for the day, Si Wilson at Dulay Seymour drank 31 cups of tea and Lee Long drank a cuppa in the middle of the Humber Bridge.

The day wouldn’t have been a success without the help of tea brand ‘Make Mine a Builders’, who helped us drum up support and also donated 6 months worth of tea to the person who raised the most money, and also to the person with the best Teafest photo. So well done Vicki Munro for your fab fundraising efforts, and Lee Long for braving the wild winds in order to grab a photo on the Humber Bridge. Your 6 month supplies of ‘Make Mine a Builders’ tea are winging their way to you now. Enjoy!


ISSU E 3: MARC H 2010

The Drink with Paul Experience On the 9th of September 2006 Paul’s Mum, Jean Nicholson, collapsed in her bedroom from what would turn out to be a devastating, inoperable brain tumour. Just weeks later, on the 21st of December 2006, she sadly died from the illness aged only 57. As something that his Mum would have loved, and a fab fundraising idea to boot, Paul invented “The Drink with Paul Experience”. And it goes a bit like this… If you visit and sign up, Paul will do his very best to meet you and your friends for a drink anywhere in the world. No matter who you are, or where you are, he will meet you for a drink. Paul’s quick to stress that the drink needn’t be alcoholic. Water, tea,

coffee all count, and in return for his coming to meet you, all Paul asks is that after you’ve met you make a donation (no matter how small) to brainstrust. So far Paul has raised an astounding £4000, but he’s looking for more people to join him. In his own words, “The more the merrier and there’s no need to meet me alone, bring all your friends for a drink and let’s try and make as much money for brainstrust as possible… when mum died of a brain tumour she left us all with broken hearts and damaged heads. The Drink With Paul Experience is a mad idea, but it’s serious about raising money and awareness for the brilliant people at brainstrust and will hopefully help to fight this horrific illness.”

Our Little Ships

Charlotte’s twin brother, fundraise tirelessly for Charlotte’s Fund of Hope, and have so far raised over £40,000. Their incredible efforts are now funding a senior research fellow at Portsmouth University – Dr Qian An.

Charlotte’s Fund of Hope Anita Smith’s beautiful twin daughter Charlotte was diagnosed with an aggressive brain tumour in May 2007, just 4 days after her 16th birthday. The surgeon who operated on Charlotte told us that her prognosis was poor. Seven months later, whilst on chemotherapy, she was diagnosed with a second brain tumour. Charlotte began a new treatment in March 2008. Very sadly, she lost her battle against this wicked disease after such amazing courage and bravery on 21st April 2008, exactly one month before her 17th birthday. Through her Fund of Hope, Charlotte’s battle continues to help others. This was one of her wishes. Charlotte’s I believe I can Fund of Hope is raising money to support laboratory research and translational medicine at the University of

With so much interest (including an interview with the BBC), Paul has had his followers embark on their own challenges for brainstrust. Ali Topp, Dave Maber and Sam Carr refrained from drinking alcohol for the whole of November, and Gemma Hirst completed her pound for £ challenge, losing an amazing 12lbs.

Portsmouth. It is now 2010, and brainstrust is proud to be supporting Charlotte’s family.

Qian is examining variations in the way brain tumours respond to drugs. Qian says “my research will help to expand our understanding of brain tumours and ultimately provide improved management for patients with brain tumours.”

Charlotte’s Fund of Hope is already having a significant impact. Charlotte was very keen to support neuro-oncology research at Portsmouth. Thanks to her Mum, Anita, Charlotte’s dream is being achieved. Anita, Colin and Jack,

All donations to Charlotte’s Fund of Hope will help brainstrust to continue to support the laboratory research and translational medicine being developed at the University of Portsmouth’s dedicated brain tumour laboratory.

If you would like to make a contribution to this vital research, please make a donation today at charlottesfundofhope or by calling us at brainstrust on 01983 292 405.

So far, Charlotte’s fund has raised an incredible

£40,239 thank you.



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Welcome aboard

Clay shoot

The arrival of the New Year saw us welcome two new faces to brainstrust. Tessa Watson and Jacqui Cowen will be heading up our fundraising efforts, laying the foundations for our approach to raising the money we need to continue to help our patients and their carers. With Tessa and Jacqui’s bottomless enthusiasm and their shared wealth of experience, we’ll be able to continue to grow brainstrust in a sustainable way, and help more of the 7000+ people that will be receiving a devastating brain cancer diagnosis in 2010.

Until the 9 May, we’d never run a clay shoot before. What we didn’t expect was to spend the day with our fingers in our ears. Should have seen that coming really.



If you have a great fundraising idea, want to raise the profile of brainstrust in your area, or just want to say ‘welcome aboard’, why not drop Tessa, or Jacqui an email? You can reach them on and

In the fabulous setting of Compton Manor, brainstrust worked with King’s Somborne Village hall to run our first ever clay shoot. And what a day it turned out to be. Raising a spectacular £9,431, we were delighted to welcome Sir Tommy Sopwith to the event and by all accounts a superb time was had by everyone that attended.

Big Wight Matter Our inaugral Big Wight Matter, on the Isle of Wight was a huge success raising an incredible £2,562.65 to help people with brain cancer. But you know what? The real highlight for us was seeing people just getting together and having a great time, with no agendas. The two day family festival saw us all wiling away the evenings sitting on the cliff top watching the sunset over the sea, whilst drinking prosecco and eating cake with friends from the brain tumour community. It was fantastic. And the best thing of all? Well that had to be seeing two-year old Finn when he won a Britain’s tractor and trailer. We’re not sure quite how yet, but Big Wight Matter 2010 will be even better. Plans are underway so put the date in your diary now: 24 – 26 September 2010.

Don’t forget Pick up one of our lovely little elephant mascots for £14.95 (inc. P&P) at Have we got your details correct? If anything’s changed just give us a call on 01983 292 405 or email

AND THANK YOU… Much of what we do wouldn’t have been possible without the ongoing help and support of some of our corporate friends. So a big ‘thank you’ for your help in 2009 to all the lovely people at Stairway Communications, JSPR, Native Space, Make Mine a Builders, Wantedd Ltd, Chris Leah Photography, Rent a Date for Charity, Lehmann Communications, Think Creative, Solent Studios and Word Room.

Sir Tommy Sopwith at the Compton Manor clay shoot

Dates for the diary Society of British Neurological Surgeons: 24 – 26 March, Cambridge, Queens College brainstrust golf day: 6 May, Worsley Park Country Club, Manchester BNOS 2010 Conference: 23 – 25 June, University of Glasgow Big Wight Matter 2010: 24 – 26 September, Isle of Wight Royal Parks Half Marathon: 10 October, London Teafest 2010: 16 November If you are interested in taking part in any of the above, please call us 01983 292 405

8 brainstrust: registered charity no. 1114634

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