Sarcoma UK: Connect, Winter 2011

Connect info@sarcoma.org.uk www.sarcoma.org.uk

The bone & soft tissue cancer charity

Winter 20 11/1 2

Santas scamper for sarcoma

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reenwich Park, London saw 3,000 people gather to don a Santa suit and raise funds for charity. Of the 16 supporters that ran for Sarcoma UK, all completed the 5k or 10k either by walking, jogging or running. James Hibberdine came in first, running 10k in just under 40 minutes. A Year 12 pupil at Reading Blue Coat School and a keen cross country runner, James ran in support of his

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Sarcoma Awareness Week 2012

Get personally involved in our campaign to highlight sarcoma

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step sister, Pippa Hatch who has Paediatric Wildtype GIST. James said after the race: “I’ve really enjoyed the atmosphere here today and had a great time supporting and raising awareness for Sarcoma UK.” The Santa Run raised £2,000 towards sarcoma research, information and support programmes. Thank you to everyone who took part and sponsored friends & family; the perfect way to leave 2011 – on a high!

Personal experience

Peter Jay, Chairman of Trustees, contrasts his encounters with criminals and sarcoma

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Research Advisory Committee

Meet those responsible for assessing our research grants

From the Chief Executive

through: Funding scientific and medical research into causes and treatments Delivering a range of support and information services covering all aspects of sarcoma Raising awareness of sarcoma amongst the public, healthcare professionals and policy makers Campaigning on behalf of sarcoma patients for improved treatment and care.

Sarcoma UK relies on voluntary donations and fundraising activities to fund its work.

Sarcoma UK is staffed by a small team, managed by a board of trustees (many with personal experience of sarcoma) and supported by experts in the sarcoma field.

Sarcoma UK works collaboratively with doctors, nurses, researchers, and other cancer charities.

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A word from Sarcoma UK

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appy New Year! This edition of Connect hits your doorsteps at the start of 2012. At Sarcoma UK, we have an exciting and busy year ahead of us. We are investing around £100,000 this year in sarcoma research with the aim of saving or extending lives affected by sarcoma, and a new set of research grant awards will be announced in early 2012.

Our new sarcoma patient information materials will be available during 2012 and look out for Sarcoma Awareness Week in June when you will have the chance to join in with the sarcoma community to support our national awareness campaign and perhaps conquer your fears by taking part in our Sarcoma UK skydive!

With best wishes for a happy 2012 from everyone at Sarcoma UK. Lindsey Bennister Chief Executive

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Impact Research Sarcoma UK has funded over £255,000 of scientific and medical research over 3 years. Grants were awarded to four leading scientists in centres of excellence around the UK.

Sarcomas are rare cancers that develop in the supporting or connective tissues of the body such as muscle, bone, nerves, cartilage, blood vessels and fat.

Support Sarcoma UK runs three email support groups – for patients, carers, and patients with gynaecological sarcomas. Subscribers chat to each other by email and gain valuable support from other patients in the same situation. In a recent survey of subscribers, respondents overwhelmingly found the postings on the site informative.

Sarcoma UK provides support to 11 local sarcoma groups around the UK and helps new groups to set up.

Sarcoma UK has an active Facebook and Twitter page where sarcoma patients, family members and carers are able to communicate with each other in a social online environment – join us today!

There are around 3,200 new cases of sarcoma diagnosed each year in the UK.

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Information Sarcoma UK’s patient information is rated highly amongst patients and healthcare professionals. Almost 50,000 leaflets about sarcoma are sent out to individuals and hospitals each year.

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Awareness Connect (Sarcoma UK’s publication) is sent out three times a year and distributed to a database of 5000.

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Campaigning Sarcoma UK is an active member of Cancer 52 (alliance of charities representing less common cancers) and the Cancer Campaigning Group (alliance of cancer charities representing ‘third sector’ interests in the delivery of cancer services).

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What is sarcoma?

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Sarcomas are some of the commonest childhood cancers.

Most sarcomas (about 55%) affect the limbs, most frequently the leg. About 15% affect the head and neck area or are found externally on the trunk, while the remainder will be found internally in the retroperitoneum (abdominal area).

Types of sarcoma Sarcomas fall into three broad categories:

• Soft tissue cancers • Primary bone cancers Gastro-intestinal stromal • tumours

(a type of soft tissue sarcoma found in the stomach and intestines commonly known as GIST)

There are around 70 different sub-types of sarcoma within the three broad categories. These sub-types are determined by the tissue of origin (the tissue in the body where the tumour originally formed), genetic characteristics or by other molecular analysis undertaken by expert pathologists.

The most common sub-types are: Soft Tissue Fibrosarcoma Myxofibrosarcoma Desmoid tumour Liposarcoma Gastrointestinal stromal tumour (GIST) Synovial sarcoma Rhabdomyosarcoma Leiomyosarcoma Malignant peripheral nerve sheath tumour (MPNST) Angiosarcoma Kaposi’s sarcoma (KS)

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Bone Chondrosarcoma Chordoma Osteosarcoma Ewing’s sarcoma Giant cell tumour (GCT)

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www.sarcoma.org.uk

Cover picture: Leigh Hibberdine

Sarcoma UK’s key messages UK is the main charity in the UK dealing with all types • Sarcoma of sarcomas.

UK provides information and support for anyone • Sarcoma affected by sarcoma –patients, carers, relatives and friends.

UK’s aim is to achieve the best possible standard • Sarcoma of treatment and care for patients with sarcoma. It does this

Sarcoma Awarness Week 2012

Sarcoma Awareness Week 18-24 June 2012 Get involved in our awareness campaign and challenge yourself to highlight Sarcoma Awareness Week 2012... make sure you don’t miss out!

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o celebrate Sarcoma Awareness Week 2012, we want to raise awareness of sarcoma and the sarcoma community. 3,200 new cases of sarcoma are diagnosed every year in the UK and we know sarcoma does not discriminate.

We are launching our photo awareness campaign, “All in it together – the many faces of sarcoma”, a website dedicated to you – the sarcoma community.

Our aim is to create a visual montage of anybody touched by sarcoma (patients, carers, healthcare professionals, families, friends etc) showing the ‘many faces of sarcoma’. By joining in you’ll not only become part of the wider sarcoma community on line, you will make a positive impact on creating awareness nationally.

With your help, we aim to get as many profile photos of you all on our website to show support and generate some publicity around sarcoma.

A page on www.sarcoma.org.uk dedicated to Sarcoma Awareness Week will be available from April. There will be online tools and materials to support you to support us!

How to get involved Upload: a portrait photo onto our website

Write: a short blurb about yourself (name, age, connection)

Promote: the link to friends/family & set as your Facebook/Twitter profile

Donate: by supporting our campaign your financially

“With help, we aim to get as many photos as possible of you all on our website.”

Seb, 26 I have Ewing’s sarcoma

Jump in to Sarcoma Awareness Week!

If skydiving is your thing, support Sarcoma Awareness Week by making an exhilarating 10,000 feet freefall parachute jump. Sign up today by emailing skydive@sarcoma.org.uk and put the enclosed poster up in your school, work or local community to encourage others to do the same. Imagine you all taking to the skies in support of Sarcoma UK! www.sarcoma.org.uk

Connect

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Fundraising

Digging deep and playing hard Some of our supporters share their fundraising secrets The Thistle Ball

the atmosphere was one of celebration and a determination with everybody ‘digging deep’.

It was a great evening and a beautiful way to remember someone much loved, a feeling of achievement all round. We raised £6,500 for Sarcoma UK. Not bad for a night’s work!

Steve Churton

July 8th was a big day in our social calendar.

It was the date we had chosen to do some serious fundraising for Sarcoma UK. Following the very sad loss of my wife the previous October, this was something to celebrate her life and to raise some much needed funds to support more research into sarcoma. If we got together 100 people interested in enjoying themselves whilst remembering someone who they admired then wouldn’t that be great? The “Thistle Ball” was born.

Our event took place at Prestwold Hall, Loughborough.

Menus and wine lists were chosen, raffle and auction begged and a live band and magician booked.

The wind did blow and the rain lashed down, but were we dispirited? No way! Guests arrived and immediately

Church Variety Night

Left to right: Vanessa Jewson, Steve Churton, Oonagh Turnbull, Claudio Almeida Da Silva, Jayne Mayled

Pirates, the Battle of Hastings, comedy songs and a Floral Dance greeted the audience at the recent Variety Show at the Church of the Martyrs Community Hall in Leicester. Prior to this we had focused on sarcoma in our church service and screened the excellent new film from Sarcoma UK – All in it together – living with sarcoma.

Anita Pabla, Specialist Sarcoma Nurse, gave us an inspiring talk in the interval. The event was greatly enjoyed by all, even the visiting Bishop of Kilimanjaro! We raised £1,260 for Sarcoma UK. Nina de Salis Young

BPAA’s Cyclosportive

Ron Hunter, 74 Bristol Property Agents Association (BPAA) selected us as their Charity of the Year. took to the skies, They have raising over £1,290 held a Boules for Sarcoma UK. Read competition, Cyclosportive this inspiring letter (see below) we received from his and a Christmas quiz. To date they have raised £1000. We would like grandchildren to say a huge thank you.

Harrison and Matthew.

202 property agents, friends and John (left) and Ron

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families signed up to take part in the first Bristol Property Agents Association (BPAA) Cyclosportive on September 22.

The non-competitive event presented fourperson teams with the option of 30 mile and 60 mile Connect

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www.sarcoma.org.uk

Fundraising

With only head torches and the full moon for illumination, we began the final phase of the climb, plodding and zigzagging up the steep path to the crater rim. We reached Stella Point at 6.30am just at sunrise. The last 140 metes took every last ounce of our energy and we celebrated with the traditional photo and then descended as quickly as possible!

BPAA’s Jayne Rixon with ‘Best Dressed’ winners: Adam Burtt-Jones, Brian Hay, Kevin Whitehall & Steve Brewer

Picture: Charles Whitton

The relief and realisation of what we had achieved made all the pain and hardships seem like a distant memory.

So far around £3000 has been raised, to be split equally between The Sarcoma Unit at the Robert Jones and Agnes Hunt Orthopaedic Hospital, Sarcoma UK and The Young Oncology Unit at the Christie Hospital in Manchester. We wish to thank all those who sponsored us.

Ellen Harrison & Caroline Pemberton Oswestry Sarcoma Unit

cycling courses through the North Somerset and Mendip countryside.

The event started and finished at the Redwood Lodge Hotel and Country Club in Failand and was rounded off by an evening BBQ and fundraiser for Sarcoma UK and Help for Heroes.

Jayne Rixon, president of the BPAA said: “A surprising number of the city’s property agents are keen cyclists and this seemed a great way for them to enjoy their sport while helping two very worthy causes”.

If your place of work can support us in any way, we would love to hear from you. We can enhance team building activity, staff socials, as well as strengthen your profile in the community. Please contact vicki.smith@sarcoma.org.uk or call 020 7250 8271 – we’d love to hear from you!

Kilimanjaro: Conquered!

Standing at the bottom of the world’s highest free standing mountain, we participated in this gruelling challenge to raise funds for various sarcoma charities.

With Caroline being a Specialist Sarcoma Nurse and Ellen a Cancer Pathway Co-ordinator, we felt it our duty to raise awareness of sarcoma whilst each undertaking a personal challenge too.

The trek took six and a half days to reach the summit of the mountain along the Lemosho Glades route and a further one and a half days to walk back down, covering a total of around 75 kilometres.

www.sarcoma.org.uk

Elwes Arms FC in action

Kick it for sarcoma On a beautiful sunny day on August bank holiday (Sunday 28 August 2011), over 200 people attended the Elwes Arms Pub annual fundraiser in Nottingham.

The four-team eleven-a-side football tournament attracted great support from customers and the local community. The teams were the Sarcoma Eleven, Tony’s Titans, Matt’s Marvels and the Fishmongers, with Tony’s Titans being the victors. Special thanks to Nicky Mellows, Sarcoma UK Trustee, for blowing the first whistle to get the games under way.

Back at the pub following a buffet lunch for all the hungry footballers, the carnival atmosphere continued: a bouncy castle for children, a magic act and a raffle. The evening was rounded off with an auction and a very talented bunch of budding X Factor stars on the Karaoke!

We chose Sarcoma UK as our charity to support this year as we wanted to pay tribute to a family member and a close friend diagnosed with this disease.

Sarcoma UK’s Head Office was visited with a cheque for £2,320 towards sarcoma research.

Beccy Webster Connect

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Fundraising

Great South Run 2011 Thank you to all the Sarcoma UK runners who collectively raised £11,000 for Sarcoma UK

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hen people have asked me how the Great South Run was, my easy and simple answer has been ‘horrendous’; however when I look back and think about it all, I have realised it wasn’t horrendous at all and that for some odd reason I actually enjoyed it! By the first mile and a half I was seriously concerned about the amount of control I had over my legs as they had already seemed to have gone numb, by mile three I needed the loo urgently and had only seconds to spare when I managed to actually find a toilet and by mile eight I was seeing cheese burgers everywhere because of my hunger levels.

Gemma Hawkins and Charliee Howcroft-Stemp

Sally Dickinson, Stephanie Mitchell, Charli Giles, Kate Oates

However, because of everyone supporting us on the streets, Gemma, who I was running with, telling me stories, attempting to sing me songs and keep me entertained and positive throughout the race, seeing my family and the ‘Sarcoma UK’ banner half way and most importantly thinking of my amazing cousin Katherine Stittle all the way round meant that I made sure I didn’t give up once and somehow kept my legs running for 10 miles!

When I finished the race I probably couldn’t say I’ve ever been happier, but give me a pair of running shoes and such an amazing and worthy cause and I’d definitely do it all again next year!

Charliee Howcroft-Stemp

Virgin London Marathon – Sunday 22 April 2012 Sarcoma UK has a silver-bond place for the London Marathon; we get one place every five years.

We received a great response to our invitation to apply and we are pleased to announce that Angela Nicholls will be representing Sarcoma UK. Read Angela’s story: I lost my husband Tony to Ewing’s sarcoma, since then I have focused all of my energy into raising money for the organisations that helped Tony throughout his battle with Ewing’s. I work as a Medical Secretary in a doctors’ surgery where I have done so for the last ten years and in my spare time, I enjoy keeping fit and healthy by running, cycling and walking. I live in Brackley, Northamptonshire, with my daughter, Eleanor, 8. Friends and family are showing amazing support in helping me fulfil my wish to raise in excess of £2,000 in the fight against sarcoma.

Sponsor Angela at www.justgiving.com/Marathon4Tony

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If you have your own place in the London Marathon and want to run for Sarcoma UK, we are here to support you along the way. Email vicki.smith@sarcoma.org.uk

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www.sarcoma.org.uk

Personal experience

Private investigations Sarcoma UK Chairman of Trustees Peter Jay, a former Detective Chief Inspector of the Met, recalls the day he arrested a serial killer and his more recent personal encounter with sarcoma

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n a cold bitter day in February 1983, I was minding my own business in my office when I received a call from Inspector Slade: “Come to Muswell Hill, there is something funny in the drains”. A flesh-like substance and tiny bones had been discovered. I took these to the lab. The pathologist confirmed our suspicions that they were in fact human remains and that the victim had been strangled.

I immediately went back to the property to meet with the tenant, Dennis Nilsen, as he returned from work. “I’m Detective Chief Inspector Jay, I’ve come about the drains... they’re blocked with human flesh” I said, to which he replied: “Good grief, how awful”. My gut instinct kicked in and I said: “Don’t mess about, where’s the rest of the body?” Nilsen replied: “In two plastic bags in the front room”. The smell of rotting flesh inside Nilsen’s house was overpowering.

Three people had been murdered at this address and their remains stored in cupboards and chests.

After 31 hours of interviews, Nilsen admitted in interviews to killing 15 men and boys. He stood trial in October 1983 at the Criminal Court in London and was sentenced to life imprisonment, with a recommendation that he was to serve no less than 25 years. I led the investigation and my emotions were complicated by the fact that I had to build up a working relationship with Nilsen in order to be led to clues about his victims.

When I look back now at my work for the Met, I am sure that the experience I gained there helped me cope with the shock when, 17 years ago, I was diagnosed with sarcoma.

Like my journey with sarcoma, the investigations and subsequent trials of criminals like Nilsen were

www.sarcoma.org.uk

Every time the GP cut me open a bit further there was more of it.

Suddenly he snipped a length off and declared that this was the ‘fourth most perspiration inducing tumour he had ever tackled as a GP’. The problem was I knew he hadn’t got all of it as I was watching.

often long and complex, requiring considerable patience and detailed research. And let’s be honest, when you hear the word cancer, you can’t help automatically thinking of your own life sentence and wonder how you became the latest innocent victim.

My sarcoma was triggered by trauma, I got off a train in London at an awkward angle because of crowding and instead of ‘minding the gap’ I went straight down it. My right shin took the force of it, was badly grazed and bruised by slipping between the train and the platform. It hurt.

When it healed I noticed a lump but assumed it was another harmless cyst.

Left: Our Chairman, Peter Jay (former Detective Chief Inspector) outside the Old Bailey in 1983

The lab result was promised within ten days. After five weeks waiting I received a phone call – it was the GP who said, “Sorry Peter, it’s malignant!” For five weeks I had been walking around with the open end of a malignant tumour in my leg.

I was fast tracked into a special soft tissue tumour clinic at St Thomas’s Hospital in London. I saw an orthopaedic surgeon who had me in theatre immediately to remove the rest of it. He later told me that it might have seeded itself so a recurrence was possible. It might be that I would lose my leg.

Four months later up popped another one. I was taken into St Thomas’s again for much more complex surgery (but I kept my leg) and then 33 sessions of radiotherapy.

After three months I became After that I had regular checks and suspicious because it appeared to be three monthly scans. I had further scans growing. I measured it and made a and checks for seven years – then I note. Six months later I went to my was told “Consider yourself cured”.

GP as it had doubled in size and was very firm to the touch. The GP told One of the challenges following my me, “Mr Jay, it is probably nothing diagnosis was that no-one I knew to worry about”. Again, my gut had ever heard of sarcoma. It “I am sure instinct told me this was indeed was ridiculous that something that my experience as serious and evil as that something to worry about and I asked for a referral to get it was a mystery to everyone. at the Met helped removed. Ten months later, I decided to find out me cope when I was everything with a growing lump and no I could. diagnosed with action, I demanded immediate action and ten days later the I learned that sarcoma is a rare sarcoma.”

GP opened up my shin to remove and nasty type of cancer that the lump; it was a 4cm white tumour frequently takes months, if not years, that looked like it had been squeezed to diagnose and is as devious as you from a tube of toothpaste. can possibly get. There are about Connect

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Personal experience

3,200 new cases each year in the UK but it gets worse – there are over seventy different types of it. One per cent of adult cancers are sarcoma but with kids it is almost twenty per cent.

My own sarcoma was an ‘epithelioid malignant peripheral nerve sheath tumour’ but could have been a leiomysarcoma or something else with an unattractive tongue-twisting name.

Thankfully not every lump on the human body is a possible sarcoma. It would be easy to cause panic amongst the public if an unclear message went out.

It is vital to appreciate that there are possibly very many lumps on a body that are completely harmless. If a new one appears by all means photograph it with a measuring tape in the picture to demonstrate its size and take note of the date of the picture.

While researching the condition I discovered a small support organisation run by a patient (now our Honorary President, Roger Wilson) and his wife from their home in Shropshire. Soon I was managing the email helpline and years later I took on my current role as the Chairman of the Trustees at Sarcoma UK, the main charity in the UK dealing with all types of sarcomas.

Our patient and carers groups have grown rapidly; there is so much we can do if only we can get funding. Money is the oxygen that keeps us going and raising money for something no one has ever heard of is quite an art!

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Driving us all forward is the need to support people affected by sarcoma, fund medical research into it and improve awareness amongst the public, healthcare professionals and policy makers. Put simply, we want to help prevent further victims of this disease.

Connect

It’s been emotional When someone is diagnosed with cancer, the immediate focus is on the medical side of the disease and how to treat it, and the emotional impact of cancer is often left untreated and unaddressed. In Liverpool, cancer patients have access to a dedicated psychology service for cancer.

Dr Jonnie Raynes, Chartered Clinical Psychologist for the Liverpool service, considers the emotional impact of cancer

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uch of my work involves talking with people about their reactions to cancer and making sense of their experiences.

One of the most common things people say is that they have lost their confidence. They turn down invitations to meet up with friends and avoid bumping into neighbours. Holidays are the very last thing they want, while often their families are suggesting that a holiday is exactly what they need. For many, staying at home is the only place that feels okay. What’s more, this lack of confidence can run so deep that it feels as if they have become a different person and they are at a loss to explain it.

There are a number of contributory factors. Some are physical. Cancer is unlike most other illnesses because the treatment may make you feel much worse than the actual symptoms of the disease. By the end of treatment, you may well be physically exhausted, with your body needing time to rebuild. Unfortunately the people around you may see the end of chemo or radiotherapy as meaning you are now well, whereas the reality for you is that it marks the beginning of a different phase of recovery. This is particularly the case where treatment has led to permanent physical changes that you have to adapt to. This phase of recovery and adaptation will take time – probably longer than you expect and almost certainly longer than you want.

Equally there are psychological factors that affect a person’s confidence. All of us carry unspoken assumptions about ourselves and our place in the world. We assume that life goes on and that our future stretches out into next month and next year. We assume that what we plan (mostly) is what will happen. We assume that our body will do what we ask of it and we don’t need to worry about serious illness because we seem fit and healthy. Being able to take these fundamentals for granted is what allows us to do the other things – work, holidays, socialising – with confidence. But a

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diagnosis of cancer calls those assumptions into question.

I suspect that all cancer patients have to face this and readjust their assumptions in some way. This is emotionally demanding work and can make you feel vulnerable. It is hard to do it during treatment, when the focus is on the practical demands of hospital appointments and ‘getting through it’. It is almost as if the immediate dangers posed by treatment need to be over before this readjustment of assumptions can be tackled.

With so much going on inside your mind, it is perhaps unsurprising if you have less capacity for the demands of the outside world. Reducing what others ask of you may be a necessary step to rebuilding trust in your future and in your body. But there can be something else as well – and that is your own reluctance to let others see your vulnerability. I often ask people how they would react if the roles were reversed – someone else had the cancer and they were okay. Most of us would show sensitivity and compassion – and above all wouldn’t think less of someone if they’re not their usual outgoing selves. Sometimes rebuilding confidence requires this leap of faith, that other people are the same and will not take advantage of your vulnerability. Accepting this can make it easier to see people. And through the positive experience of meeting and being around others, you can rebuild the confidence in yourself.

Here in Liverpool, the mental health and wellbeing of cancer patients is a real priority for our local Primary Care Trust and our local hospital. Together with the University of Liverpool, they have developed and supported our dedicated psychology service for cancer patients. We work one to one with patients to help them make sense of their experiences and to find ways of adjusting and adapting to their situation.

www.sarcoma.org.uk

Support groups

Join the sarcoma community!

Contact vicki.smith@ sarcoma.org.uk for help with marketing materials like leaflets and banners for your area.

Scotland - Glasgow

Meets: Third Wednesday of every month, 2.30 – 4pm Venue: Maggie’s Centre, The Gatehouse, Western Infirmary,10 Dumbarton Road, Glasgow G11 6PA Dawn Currie, Sarcoma CNS - 0141 301 7599 Gillian Hailstones, Maggie’s Centre - 0141 330 3311

Newcastle and Tyneside

Meets: First Monday of every month, 7 – 10pm Venue: Education centre, Freeman’s Hospital Cuth Earl, Group secretary - 0191 520 1824

Manchester

Meets: Last Tuesday of Jan, March, May, Sept and Nov, from 5pm Venue: Manchester Royal Infirmary, Seminar Room 1 (adjacent to Ward 1) Helen Murray, Clinical Specialist Sarcoma Nurse (MRI) - 0161 276 6187 (Pager 07659 596823) Maxine Cumbo, Specialist Sarcoma Physiotherapist (MRI) - 0161 276 6845 Lena Richards, Specialist Sarcoma Physiotherapist (Christie) - 0161 446 3795 or 0161 446 3000 (Bleep 12539)

Merseyside and Cheshire

Meets: 3 - 4 times a year, 4-6pm Venue: Cancer Research UK Building, 200 London Road, Liverpool L3 9TA E: mcsarsup@gmail.com

Sheffield (and surrounding areas)

Meets: Second Friday of Jan, March, May, July, Sept and Nov, afternoon Venue: Cancer Support Centre, 23 Northumberland Road, just behind Weston Park Hospital, Sheffield or Royal Hallamshire Hospital CNS Judy Darwent, North Trent Sarcoma Lead Nurse - 0114 2261436 CNS Anne French - 0114 2713478 CNS Maxine Eades - 0114 2265621 E: sheffieldsarcomasupport@gmail.com W: www.sheffieldsarcomasupport.org.uk

East Midlands (and eastern counties) Meets: Third Tuesday of every month, 5 – 7pm Venue: Helen Webb House, 35 Westleigh Road, Leicester, LE3 0HH E: emssg@live.co.uk Oxford (inc Thames Valley, south and parts of south west England)

Meets: First Thursday of every month, 2-4pm Venue: Tebbit Centre, the Nuffield Orthopaedic Centre, Windmill Road, Oxford Pip Large - 01865 737861; philippa.large@noc.nhs.uk Helen Stradling - 01865 738282; helen.stradling@noc.nhs.uk W: www.oxfordsarcoma.co.uk/2011/01/oxford-sarcoma-support-group-2011

London

Bristol and South West England

Meets: Third Monday of every month, 4 – 6pm Venue: tba W: www.bristolsarcomasupport.co.uk

Meets: Alternate first Weds and Thurs (once a month), 4 – 6pm Venue: Weds - Ground Floor Physio Gym in The Markus Centre, Royal Marsden Hospital, London SW3 6JJ. (NB: Easiest access to this department is via the Dovehouse Street entrance.)

Venue: Thurs – The Seminar Room, RNOHT, Central London Outpatient assessment Centre, 45 Bolsover Street, London W1W 5AQ W: www.londonsarcomasupport.net

South of England Exeter

A new group that meets at the FORCE cancer centre in Exeter; for more information contact Sarcoma UK 020 7250 8271

Meets: 11 Jan; 14 March; 9 May; 11 July; 12 Sept; 14 Nov, 2.30 – 4.30pm Venue: Wessex Cancer Trust, Bellis House, 11 Westwood Road, Southampton SO17 1DL Louise Sharif, Sarcoma Clinical Nurse Specialist - 07769 234598 and 02380 796752 E: louise.sharif@suht.swest.nhs.uk

Always check with your local group direct before attending, in case details have changed.

This information is provided by the individual support groups, and is the latest we have received from the groups.

If you don’t have a local support group, and would like to set one up, get in touch - call 020 7250 8271 or email info@sarcoma.org.uk www.sarcoma.org.uk

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Research

Research Advisory Committee Say hello to Sarcoma UK’s new Research Advisory Committee (RAC)

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the RAC membership is balanced and decisions are well informed and impartial. They are independent of the Trustees and give the Board their considered scientific opinion.

arcoma UK is currently putting in place new plans and processes to fund further research in 2012. Two of the four projects that we funded in an earlier grant round are still underway and are due to report in 2012. Cancer research is a good thing but when you give to cancer research, what happens next?

‘Donating to cancer research’, ‘in aid of cancer research’ ‘supporting cancer research’ – all familiar statements but what do they mean?

Over the last few months Sarcoma UK has been refining our version of ‘what happens next’ for our sarcoma research. As a patient and carer led organisation, research is a leading organisational priority as it is the only way of saving or extending lives affected by sarcoma or improving quality of survivorship after a sarcoma diagnosis. We have a modest income for research but we aim to do the very best we can with what there is.

We have been streamlining our grant giving and progress monitoring, and also thinking about our Research Strategy. It’s all still work in progress but at the end of this research revamp we hope to become members of the Association of Medical Research Charities (AMRC). This means we meet and maintain a standard of best practice on an equal footing with better-known member charities.

To follow best practice (and join the AMRC) we need two building blocks. One is a Peer Review process for identifying which research projects to support. The other is a Research Strategy.

So far we’ve almost finished the first task and are making inroads into the second.

We have set up a permanent Research Advisory Committee, with Chairman Prof. Ian Judson and Vice Chairman Prof. Penella Woll at the helm. The RAC will oversee our research programme. We’d like to introduce you to our members, all of whom are volunteers and give up their precious time to help us, for which we are very grateful.

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The committee are all expert in sarcoma with varied specialisms. Alongside many more unnamed external expert reviewers they will help us direct funding to the best projects. The RAC will also keep us abreast of trends in the wider world of sarcoma. They come from various centres across the UK, which ensures Connect

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Chairman [London] Prof Ian Judson Medical oncology and translational science Vice Chairman [Sheffield] Prof. Penella Woll Medical oncology and translational science Member [Edinburgh] Mr Sam Patton Orthopaedic surgeon Member [London] Dr Janet Shipley Basic science Member [London] Dr Julia Riley Palliative care Member [Oxford] Prof. Bass Hassan Medical oncology and translational science Member [Birmingham] Mr Lee Jeys Orthopaedic surgeon Member [Bristol] Dr Paula Wilson Clinical oncology

The RAC is key to the Peer Review process. This is an important system where the research we could fund is assessed for quality and importance by other scientists – the peers – by reviewing the proposals. Each project has two or three reviewers – some external to the Committee – and their views are amalgamated. The RAC meets and makes recommendations to the Board of Trustees who make the ultimate funding decisions, knowing that the quality and scientific importance of the project is already agreed.

Each year the RAC will oversee the Call for Proposals when scientists and doctors send in their detailed proposals. The 2011 process is just finishing when you read this.

The second building block is the Strategy.

The Research Strategy is our manifesto, showing how we see our niche as a funder of sarcoma research and how we intend to go about occupying it. It will involve difficult choices, to target our small funds effectively. When the strategy is finalised, it will be available permanently on the website.

The strategy will spell out What Sarcoma UK’s research niche is Where we can add value to the wider field of sarcoma research Where we could collaborate and with whom What types of research to fund and how And also how we see things developing

• • • • •

The Strategy has to take into account what other funders are doing. We want to avoid needless duplication but we mustn’t work in total isolation either.

Whilst doing its utmost with donated funds Sarcoma UK will also make campaigning statements on sarcoma research, to increase the awareness of Government, policy-makers, regulators and the media of the need for research into sarcoma whoever funds it. However, donors to Sarcoma UK’s research effort will know with certainty that their funds are specifically targeted at research into sarcoma. This is our key message. www.sarcoma.org.uk

Research

Clinical trials in sarcoma If you feel that a clinical study might be of value you should talk to your doctors.

Most of the trials below are multicentre studies.

See our website for more information: http://sarcoma.org.uk/Looking-for-research-to-join Trial Name

Description

Status

ADULT SOFT TISSUE SARCOMA VORTEX

Phase III randomised trial – volume of post-operative radiotherapy in adult extremity soft tissue sarcoma.

Open

VORTEX BIOBANK

Prospective sample collection for the VORTEX randomised radiotherapy trial.

Open

TRUSTS

A Phase III study of the safety and effectiveness of trabectedin versus doxorubicin-based chemotherapy in first line for patients with untreated metastatic or advanced sarcoma.

Open

Axi-STS

Axitinib in patients with advanced angiosarcoma and other soft tissue sarcomas: a phase II open-label parallel-group (non-randomised) study.

Open

CASPS

Phase II study of cediranib (AZD2171) in the treatment of patients with alveolar soft part sarcoma.

Open

PICASSO

A study to evaluate the clinical benefit of palifosfamide tris administered with doxorubicin in combination, compared with single-agent doxorubicin for patients with unresectable or metastatic soft-tissue sarcoma.

Open

Eribulin 3rd Line

A randomised open label Phase III study to compare efficacy of eribulin versus dacarbazine in third line for patients with advanced soft tissue sarcoma.

Open

Adults and young people soft tissue sarcomas GeDDIS

Phase III randomised – gemcitabine+docetaxel compared with doxorubicin as first line treatment in previously untreated locally advanced, unresectable or metastatic soft tissue sarcoma. Eligibility age 13 +.

Open

VIT

Phase II randomised study of vincristine and irinotecan plus/minus temozolomide in advanced rhabdomyosarcoma patients aged <50 years.

In set up

Paediatric soft tissue sarcomas EpSSG RMS 2005

Treatment of children and young people presenting with non-metastatic rhabdomyosarcoma.

Open

EpSSG non-Rhabdo

Treatment of children with non rhabdomyosarcoma soft tissue sarcomas. Open to adults aged up to 21.

Open

BERNIE

A study of avastin (bevacizumab) in combination with standard chemotherapy in children and adolescents with metastatic rhabdomyosarcoma or non-rhabdomyosarcoma soft tissue sarcoma. Randomised Phase II design.

Open

A randomized, open-label, multi-centre phase III study to evaluate the efficacy and safety of nilotinib versus imatinib in adult patients with unresectable or metastatic gastrointestinal stromal tumors (GIST).

Closed

GIST NILOTINIB IN GIST

primary BONE SARCOMAs EUROEWING

Multi-modal therapies treating patients with Ewing’s sarcoma.

Open

EURAMOS 1

Phase III – strategies for resectable osteosarcoma based on response to pre-operative chemotherapy.

Closed

OTIS

A Phase II Study to determine the efficacy and safety of conventional dose oral treosulfan In patients with advanced pre-treated Ewing’s Sarcoma.

Open

Denosumab GCT

Safety study of denosumab in patients with recurrent or unresectable giant cell tumor of bone.

Open

www.sarcoma.org.uk

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Opinion

Reality is a NICE place...

Roger Wilson, Honorary President, Sarcoma UK, tells us about the relationship between NICE and sarcoma

T

he National Institute of Health & Clinical Excellence, known as NICE, is the regulator for the NHS in England and Wales which has guardianship of standards of clinical care, of quality and is responsible for approving the funding of new drugs. Cancer is a constant theme for NICE, even though it only accounts for about 6% of NHS expenditure, because political priorities were set in 1999 which gave an emphasis to improving the outcomes for patients.

There have been some significant improvements in NHS care over those 12 years. The structure of cancer services has radically changed and every patient now comes under the care of a consultant with expertise, working in a hospital which is recognised as a cancer treatment centre.

Improving Outcomes Guidance In the mid-1990s the NHS started to define the service structures which would deliver the best outcomes for cancer patients. The programme of work reached sarcoma in 2004. One of the first things uncovered was that over 50 hospitals had treated five or fewer sarcoma patients recently, hardly a “The way of building NICE Appraisal expertise.

process can take well over a year.”

However by international standards the NHS is slow at adopting new treatments and part of the reason for that slowness is NICE. This subject is debated in the press from time to time, and the concentration is always on common cancers and their treatments. It is fair to ask what NICE has done to help sarcoma patients, and what could be done better for the benefit of our patients.

NICE Technology appraisals for sarcoma

12

2004

Imatinib (Glivec) for GIST – partial approval

2009

Sunitinib (Sutent) for GIST – approved

2009

Trabectedin (Yondelis) for soft tissue sarcoma – approved

2010

Review of imatinib (high dose) for GIST – refused

2010

Adjuvant imatinib for GIST – refused – early review agreed

2011

Mifamurtide (Mepact) for osteosarcoma – approved

2012

Ridaforolimus for bone & soft tissue sarcoma – to start in Spring 2012

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• Sarcoma UK • Winter 20 11/1 2

Recommendations were published in 2006 and have now been implemented. We have 15 multi-disciplinary teams (MDT) in England and one in Wales under these arrangements, while Scotland has developed a formal network covering five regional centres. Some of these MDTs cover more than one hospital, and within the whole structure there are centre specialities for rare sarcomas such as primary bone tumours.

Appraising new drugs The NICE Technology Appraisal programme was put in place in 1997 with the aim of eliminating ‘postcode prescribing’ – different access to drugs according to the home location of the patient. The intention was to have a central body which could quickly decide whether a drug was cost effective for the NHS to use, and for that decision to be binding on all local NHS funders.

It has not worked out quite the way it was hoped. The NICE Appraisal process can take well over a year (a recent one for sarcoma took over 3 years) and the final decisions for new cancer drugs are now driven by the cost of the drug, not its clinical effectiveness.

NICE is very process orientated and is led from an academic health economics viewpoint, not a clinical one. A major concern for us has been how the process works and whether the fact that sarcomas are rare creates a disadvantage. Sadly we have become increasingly convinced that the NICE process is not suitable for reviewing treatments for very rare diseases and we are working to see changes to the way the NHS approaches the challenge.

We have been involved in six appraisals over the last seven years.

We work together with other patient organisations on these appraisals – among them GIST Support UK, the Bone Cancer Research Trust, and the Rarer Cancers Foundation. Among the problems we have had are: Provisional refusals for every • treatment appraised – largely because there have been few clinical trials and the evidence is statistically inconclusive Delayed analysis of costeffectiveness for a drug which gained accelerated licensing because of its effectiveness A Final Decision inappropriately limiting access in conflict with the evidence – won on appeal Use of a lung cancer quality-of-life model for advanced soft tissue sarcoma – overturned after an active debate Failure to appraise standard clinical practice because the drug was not licensed – leaving UK isolated as the only country in the world not guaranteeing access to this treatment for about 30 patients a year An unbalanced evidence review addressing a question to which the answer was already known Using a cost-effectiveness model based on short survival for patients experiencing long-term survival

• • • •

• •

www.sarcoma.org.uk

News

We have also had patients appearing as witnesses patronised, insulted and their evidence ignored. In one case the evidence ignored conflicted with ‘expert’ evidence which we then had to prove was inaccurate.

The current NICE process is to be partially superseded in 2014 by the government’s plan to introduce ‘value-based pricing’. Details are still unclear but it has been proposed that the clinical benefit gained by patients from a treatment will influence what is regarded as an acceptable price for the NHS to pay for the drug.

Our concerns are that much of the existing appraisal process may be retained, rather than reviewed or, as we would prefer, completely replaced for rare cancers. We have made representations to government about this.

Quality Standards The present government is introducing Quality Standards to describe the care which patients should expect from the NHS. About 170 of these standards are planned.

NICE has indicated that there will be a Quality Standard for the treatment of sarcoma. We await its plans for this with interest.

Scottish Medicines Consortium The Scottish Medicines Consortium, usually known as SMC, has a similar responsibility to NICE for the appraisal of new drugs in Scotland. Its processes are simpler, but still very thorough, and a decision is usually reached within six months. Every newly licensed drug is reviewed, whether the manufacturer takes part in the review or not. However, a manufacturer can ask for a drug to be reviewed at any time, and can present any new research data to support its application. For sarcoma SMC has not licensed trabectedin, which has been approved by NICE in England and Wales, thereby, denying sarcoma patients in Scotland access to this treatment for advances soft tissue sarcoma.

www.sarcoma.org.uk

Globe trotter The latest international sarcoma-related news Sarcoma Patients EuroNet Association (SPAEN) “A Better Future for Patients with a Rare Cancer” 2nd annual conference: 17-19 November 2011, Berlin SPAEN is a European network of sarcoma, GIST and desmoid patient advocacy groups, founded in April 2009 with the aim of extending information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe. There are currently 18 full members representing sarcoma patients in Finland, France, Germany, Italy, Macedonia, Netherlands, Poland, Romania, Sweden, Switzerland and the UK. SPAEN holds an annual conference which this year took place in Berlin.

The aim of the conference was to give patient groups the opportunity to meet clinical experts from across Europe as well as encouraging networking with other patient organisations to share experiences of successes (and the difficulties) which come with running a sarcoma patient organisation.

The UK was well represented at the conference by Sarcoma UK delegates including leaders of some of the regionally based sarcoma support groups, Sarcoma UK staff and volunteers. They were joined by colleagues from GIST Support UK. Clinical expertise in the UK was also showcased by excellent presentations on ‘The surgical treatment of retroperitoneal sarcomas’ by Dr Dirk Strauss (Royal Marsden), and ‘The role of surgery and reconstruction in bone sarcomas’ and a profile of Chordoma

by Lee Jeys (Royal Orthopaedic Hospital Birmingham).

A day was devoted to advocacy, presenting an opportunity for patient groups to discuss issues around national needs, problems and challenges in access to clinical excellence, and sharing experiences of successful advocacy and patient group work. Sarcoma UK’s chief executive, Lindsey Bennister, talked to delegates about how Sarcoma UK has improved its support for patients by introducing professional staff.

A Sarcoma UK delegate commented: “It was an extremely useful gettogether. I think that SPAEN have got a clear picture of where action is needed and how we can help each other. The presentations were all of a very high standard. The conference was special in that everyone was so friendly towards each other and mixed freely. Praise should go to those people who were prepared to work in a non-native tongue.”

London calling?

The London 2012 Olympic marathon is the latest target for U.S. distance runner, mother and sarcoma survivor Serena Burla, who was told by doctors two years ago she might never run again.

Burla, 29, had surgery in January 2010 to remove a synovial sarcoma from her right thigh, along with part of her hamstring.

Three months later Burla went for her first tentative jog following the operation and in November 2010 ran her debut marathon, in New York, finishing 19th in an incredible time of 2 hours 37 minutes.

“I was just so happy to be there, and felt so blessed, that the outcome didn’t matter to me,” she recalls.

This January Burla is set to line up for the US Olympic marathon trials in Houston and take another step in her remarkable recovery.

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Sarcoma UK news

Behind the scenes Sarcoma UK is growing due to the demand on our services. We would like to introduce you to our team; it’s always nice to put a face to a name!

Lindsey Bennister Chief Executive Lindsey Bennister is responsible for the strategic direction and management of the charity.

See ‘A word from our Chief Executive’ on page 2.

Victoria Smith Head of Fundraising & Marketing Vicki’s daily activity involves dealing with all fundraising enquiries; she can send you out a fundraising pack to help with your local community event and she organises our portfolio of running events and skydives.

Vicki also collates Sarcoma UK’s marketing materials such as Connect, merchandise and print.

Email: vicki.smith@sarcoma.org.uk

Lorena Cela Head of Operations Lorena manages the day to day activities of Sarcoma UK to ensure that operations

run smoothly. Lorena deals with many sarcoma enquiries and manages special projects on the side such as implementing our website and coordinating the research application process. Lorena is usually the person on the other end of the phone if you contact our office.

Email: lorena.cela@sarcoma.org.uk

New trustee appointed Michael Hannah Online Support Group Manager Michael became involved with Sarcoma UK when his sister was diagnosed with liposarcoma. He has a lot of technical expertise and now manages our online support groups for carers and patients.

Sarcoma UK provides a safe hub for sharing experiences with other people in a similar situation.

Email: michael.hannah@sarcoma.org.uk

Glenys Stittle Office volunteer Glenys follows on the legacy of her daughter Katherine, who provided

It does what it says on the tin!

14

Sarcoma UK is the main charity in the UK covering all types of sarcoma – bone, soft tissue and GIST. Raising awareness of sarcoma is a key objective for the charity.

One of the biggest challenges facing us is explaining sarcoma to the wider public and putting over a clear message about what sarcoma is and what the charity does to support people. Following a lot of market research and input from an independent marketing agency, we are pleased to announce a new strap line for the charity – Sarcoma UK The bone & soft tissue cancer charity “The bone and soft tissue cancer charity” Connect

• Sarcoma UK • Winter 20 11/1 2

Glyn Wilmshurst Director, Touchline Publishing We welcome Glyn to our board of established trustees. Glyn spent his career in the media – as a journalist, publisher and now director of a communications agency. Glyn was diagnosed with myxoid liposarcoma in his right thigh and is making a good recovery, continuing his running and cricket hobbies. He brings both personal and media experience to Sarcoma UK. administration support at our HQ. Sadly, Katherine passed away from synovial sarcoma earlier this year. Her brother James produced our All in it together – living with sarcoma DVD in her memory. We are very grateful for The Stittles’ continued support.

Sam Whittam Office volunteer Sam helps us out on an ad hoc basis researching Trusts & Foundations to which we can apply for funding. Sam wanted to give something back when she lost her good friend, Adrian, to sarcoma. Sam works as a Barrister and is a mother to Joseph, 5 and Martha, 3.

We have lots of exciting things happening in 2012 and we hope that you can be part of our wider sarcoma community. Connect’s next edition is published in April – stay tuned! www.sarcoma.org.uk

Directory

How can you help?

The bone & soft tissue cancer charity

How can we help?

• Donate by phone: Just Text Giving Text SAUK00 £10 to 70070 to donate to Sarcoma UK and make a difference today!

Sarcoma UK can send you regular information and updates:

Please tick here if you wish to be added to the mailing list, and fill in your contact details below.

Please insert number of leaflets required in the appropriate boxes.

About Sarcoma UK Pocket Guide to sarcoma Understanding sarcoma Following surgery Advanced sarcoma

I would like to join in the fight against sarcoma

This is a brand new, free service from Justgiving and Vodafone that has no set up or fundraising costs, no network charges for people making donations and every penny donated goes straight to Sarcoma UK. Minimum donation £1 and maximum donation is £10.

Gift Aid can also be added to donations.

• Donate online www.sarcoma.org.uk • Donate by BACS Payee: Sarcoma UK Bank: CAF Bank Ltd Branch: 25 Kings Hill Ave, West Malling, Kent, ME19 4JQ Sort Code: 40-52-40 Acct No: 00019763

Retroperitoneal sarcoma

• Donate by cheque I attach a cheque (made out to Sarcoma UK) for:

Gynae sarcoma

£5

£10

£20

£50

£100

Your contact details: Name: Title

First name

Surname

Address:

Postcode

Tel: Email: If you are making a donation and are a UK tax payer, you can ‘Gift Aid’ your donation. This means that Sarcoma UK can reclaim Gift Aid tax relief of 28p on every pound you give. The charity is only able to claim Gift Aid on your donation if you provide your home address and sign the declaration below.

Gift Aid Declaration

Please treat all donations I make, from the date of this declaration until I notify you otherwise, to Sarcoma UK as Gift Aid donations. I am a UK taxpayer and pay an amount of income tax and/or capital gains tax each year at least equal to the tax that can be reclaimed on my donation(s).

Signed:

Date:

Thank you, your donation will help us fund sarcoma research, support and information programmes. www.sarcoma.org.uk

Please return form to Sarcoma UK, 49-51 East Road, London N1 6AH

Whether you are fundraising or raising awareness, we have many resources to support you: www.sarcoma.org.uk

Our website is a great way to keep up to date with Sarcoma UK. You can find information on research as well as download fundraising materials all at the click of a mouse!

Pocket Guide to sarcoma

Our brand new glossy booklet provides key facts about sarcoma. It is a great way to learn about sarcoma or to give to people who don’t know about sarcoma – it is handy to give out at schools, work or in the community.

Donation envelopes

Our donation envelopes are great for any type of money collection for gifts in celebration. We have enclosed an envelope in this issue of Connect –try it!

Stickers

We all like to thank our supporters. If you are holding a fundraising event we can send you some out with a fundraising pack that includes sponsorship forms and letter of authority.

T-shirts/Running vests

If you are taking part in a fundraising event such as a sponsored walk or run, email us and we will send you one out in the post.

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To order any of the above materials, email vicki.smith@sarcoma.org.uk Sarcoma UK 49-51 East Road, London N1 6AH Tel: 020 7250 8271 Email: info@sarcoma.org.uk www.sarcoma.org.uk twitter.com/sarcoma_uk facebook.com/uk.sarcoma Registered charity: 1139869 (England and Wales) A company limited by guarantee: 7487432 (England and Wales)

Connect editorial and production team Editorial: Lindsey Bennister, Lorena Cela, Vicki Smith, Glyn Wilmshurst and Roger Wilson Design: INQ Design Ltd 020 7737 5775

Chair of Trustees Peter Jay Chief Executive Lindsey Bennister Honorary President Roger Wilson CBE Scientific/Medical Advisor Professor Ian Judson Board of Trustees Lesley Abraham Dr Jane Barrett Karen Delin Nicky Mellows Glyn Wilmshurst

Disclaimer: Please note that personal views and opinions expressed are not necessarily endorsed by Sarcoma UK. The material in this publication is provided for personal, non-commercial, educational and informational purposes only and does not constitute a recommendation or endorsement with respect to any company, medical professional or product. Sarcoma UK makes no representations and specifically disclaims all warranties, expressed, implied or statutory, regarding the accuracy, timeliness, completeness, merchantability or fitness for any particular purpose of any material contained in this or attached document/s. The information contained in Connect is not intended to replace advice or medical care from your doctor.

No part of this publication may be reproduced in any way without prior permission from Sarcoma UK.