Pink Science Magazine Summer 2014

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PINKSCIENCE BREAST CANCER CAMPAIGN MAGAZINE / SUMMER 2014

WILL YOU JOIN IN?

From running marathons to volunteering – there are lots of ways to help

LEAVE YOUR LEGACY

How you can leave a gift in your Will to support future research

Her illness has made my work more personal DR PAUL SHORE AND WIFE LINDA ON FIGHTING BREAST CANCER IN THE LAB – AND AT HOME


GET TO KNOW US In the past 20 years, the campaign to beat breast cancer has gone from strength to strength, and more women are outliving the disease than ever before. But it’s still the most common cancer in the UK, which is why we fund world-class research with the greatest potential to save and improve lives, bringing together the brightest minds to share knowledge and produce better, quicker results. We believe we owe it to every woman affected by breast cancer to explore all avenues to overcome this disease – in our lifetime. We’re a unique community of scientists, supporters and people affected by breast cancer, and we know that research saves lives. But research takes time and we need your support now to help us continue our pioneering work. Every penny moves us towards a future that’s free of breast cancer. Help us overcome this disease once and for all. Every year, 50,000 women in the UK are diagnosed with breast cancer, 12,000 will die, and millions of us live with its long-term impact. And the disease is on the increase – by 2025 an estimated 57,000 women in the

£46 million

TOTAL WE HAVE AWARDED IN GRANTS TO FUND BREAST CANCER RESEARCH IN THE PAST 17 YEARS

UK will be diagnosed with breast cancer. We must take urgent action, and we need your help to fund the collaborative research that saves and improves lives.

OUR VISION A world where breast cancer is overcome and outlived.

OUR MISSION To accelerate progress by bringing together the best minds and biggest hearts to drive world-class breast cancer research, influence policy and practice, share knowledge and kick-start innovation.

HOW WE SPEND YOUR MONEY As of March 2014, the charity supports 88 research projects, with combined funding of nearly £13 million, in 33 centres of excellence across the UK and Ireland. All our donations come from the fundraising efforts of people like you – thank you. Over the past 17 years, the charity has awarded 450 grants with a total value of £46 million to universities, medical schools and research institutes.

TO FIND OUT MORE PLEASE VISIT OUR WEBSITE BREASTCANCERCAMPAIGN.ORG OR CALL OUR SUPPORTER CARE TEAM ON 020 7749 4114

JOIN OUR FACEBOOK GROUP OR FOLLOW US ON TWITTER @BCCAMPAIGN

BREAST CANCER FACTS

50,000 women diagnosed with breast cancer every year

12,000

women who die from breast cancer every year

80%

of women diagnosed with breast cancer today will still be DOLYH LQ ¿YH \HDUV

1 in 8

chance a woman will get breast cancer in her lifetime

3

years between screening invitations for women aged 50 to 70

400

men diagnosed with breast cancer every year – it proves fatal for around 80

Figures relate to UK and are correct at time of going to press

ABOUT US


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Inside this issue 04-09 Notebook

We celebrate all of you wonderful runners, volunteers and fundraisers. Plus, wear it pink is coming!

10-13

Fundraising

LET’S FIND THE CURES TOGETHER Welcome to the summer issue of Pink Science. You have been as busy and committed as ever, be it running marathons, doing expeditions, or visiting research projects you’ve helped to fund. We hope you’ve gained as much from these events as the charity has gained from your efforts. Breast cancer can affect anyone, as our main feature about researcher Dr Paul Shore and his wife, Linda, shows. You can read about how Dr Shore’s experience of breast cancer took him from the science lab to life at home on pages 20-25. On pages 12-13 Sue Stannard, who has also been affected by breast cancer, explains why her belief in research has encouraged her to leave a legacy to Breast Cancer Campaign. We’ll also be launching our secondary breast cancer campaign, Spread the Word, in June – and we’ll be counting on you to take action with us so that we beat this disease in our lifetime. With your help, we can really make a difference through breast cancer research – so a huge thanks to you all.

From jumping out of a plane to leaving a gift in your Will – there are so many ways to help us fund vital research

14-17 Policy

All the latest policy news, and how you can get involved in our latest secondary breast cancer campaign

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Research Professor Diana Harcourt talks about the importance of investigating how breast cancer and its treatments affect patients emotionally

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It was personal Read how Dr Paul Shore’s Campaign-funded breast cancer research took on a new meaning when his wife was diagnosed with the disease

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Pink pages Spot yourself in the supporter gallery; our latest pink products; important dates for your diary; and we ask what you want to see in your new magazine

Baroness Delyth Morgan Chief Executive, Breast Cancer Campaign

PINK SCIENCE is produced by Northstar (thisisnorthstar.com) for Breast Cancer Campaign. Project Editor Emma Barlow Deputy Project Editor Lisa Paul Designer Jo Satchell Group Project Editor Robin Swithinbank Group Art Director Matt Warner Group Production Editor Andy Tidball Production Manager Helen Craig Managing Director Mark Beazleigh. For Breast Cancer Campaign: Brand Manager Phil Hesmondhalgh Brand Executive Leanne Davies Copywriter Hayley Aaron


N OT E B O OK

HOME STRAIGHT Nic Naish was among the many supporters running for Campaign

Photos: zoltanmeszaros.co.uk and Sam Mellish

BREAST CANCER CAMPAIGN NEWS FROM AROUND THE UK


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GOING THE EXTRA 26.2 MILES FOR RESEARCH We’d like to say congratulations to Team Campaign – that’s all of you who took part in a marathon or other running event to raise vital funds

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e’re so grateful to everyone for training hard, collecting sponsorship money from all your wonderful friends and family and, of course, for bringing us a step FORVHU WR ¿QGLQJ WKH FXUHV There were lots of runners dressed in our pink vests at the Brighton Marathon in April, including Nic Naish who, with her daughter Elka, featured in our recent Mother’s Day campaign, and on the cover of the autumn issue of Pink Science. Nic was diagnosed with breast cancer in 2009, and does a lot of

work to support Campaign, so it was lovely to see her cross the ÂżQLVK OLQH ZLWK D VPLOH RQ KHU IDFH We also had more than 100 runners pounding the streets of the capital at this year’s Virgin Money London Marathon, who together raised over ÂŁ200,000. These are challenging events, but volunteers at our bright pink cheer points helped to raise everyone’s spirits. As runner Alex says: ‘It was great to see you guys on the route. It really helped during the tough bits. The whole day was just truly

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inspiring and the smile didn’t leave my face for days.’ Mary, from Nottingham, also ran the London Marathon and loved every minute of it: ‘It was the best thing I’ve ever done. Running marathons won’t bring my mum EDFN EXW ÂżQJHUV FURVVHG LW ZLOO KHOS &DPSDLJQ WR ÂżQG WKH FXUHV Âś Thanks to all of you. The money you raised will help to make a real difference to people with breast cancer. We hope to see you back out there soon!

KEEP ON RUNNING :KDWHYHU \RXU ÂżWQHVV RU DELOLW\ you can take part in a run to support Breast Cancer Campaign. For more LQIRUPDWLRQ RQ IXWXUH HYHQWV YLVLW EUHDVWFDQFHUFDPSDLJQ RUJ

He’s a record breaker!

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WEAR IT PINK IS COMING...

We were amazed by your efforts for wear it pink last October – and we want to make 2014 even better! Are you ready?

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n 25 October last year, more than a million of you joined forces with Campaign for wear it pink. Even iconic buildings across the UK lit up in pink for the day! To every single one of you who took part, thank you. So far, you have helped us raise more than £2 million for breast cancer research – and with your support we want to make 2014 even bigger. This year’s wear it pink will take place on Friday 24 October, so make sure you mark it in your diary and get ready to turn the country pink to raise vital funds. More than 2,000 of you tagged Campaign in your pink photos using the hashtag #wearitpink last year – and we thought we’d share a few of our favourites to inspire you! If you still have photos or a story to tell, we would love to hear from you. Just drop us an email at wearitpink@breastcancercampaign.org


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A TRUE INSPIRATION We pay tribute to Cheryl Stakol, the founder of the Generations Walk, who sadly passed away last year

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hroughout the lifetime of Breast Cancer Campaign, we’ve had the pleasure of meeting fantastic, inspirational supporters who have been dedicated to raising PRQH\ WR KHOS XV ¿QG WKH FXUHV 6R ZH ZHUH very sad when long-term supporter, and Generations Walk founder, Cheryl Stakol passed away at the end of last year. Cheryl was diagnosed with breast cancer in 1997, and after surgery and 10 months of treatment, she organised a sponsored walk on London’s Hampstead Heath. She chose &DPSDLJQ DV WKH EHQH¿FLDU\ FKDULW\ EHFDXVH she felt strongly about breast cancer research. The 5km walk became an annual event, and in 2000 was named Generations Walk. Cheryl (below right) wanted everyone to participate, UHJDUGOHVV RI DJH DQG ¿WQHVV WR EHQH¿W IXWXUH JHQHUDWLRQV $W WKH ¿UVW ZDON LQ -XQH people took part. By 2013 that number had grown to 300. Cheryl helped raise a staggering £450,000, which has gone towards funding vital research projects across the UK. Her legacy lives on, and this year’s Generations Walk will take place on Sunday 29 June on Hampstead Heath. Cheryl was an inspiration to many and will be missed by everyone at Breast Cancer Campaign.

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A party like no other Join us as our annual Pink Ribbon Ball celebrates its 20th anniversary in style

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ur Pink Ribbon Ball is 20 years old this year, and to mark this very special anniversary we’re going to celebrate in style. Our glamorous annual fundraising event has attracted thousands of guests and raised just under £3 million for breast cancer research. We’ve been lucky enough to have had top entertainers, including Anastacia, Beverley Knight, Sophie EllisBextor, Tony Hadley and Paloma Faith – and we can promise a star-studded line-up at this year’s ball on Saturday 11 October at London’s Dorchester hotel. As always, the Pink Ribbon Ball Committee has worked hard to organise the event, and this year members visited one of our research projects led by Dr Elinor Sawyer at Guy’s and St Thomas’ hospital to VHH ¿UVW KDQG KRZ LPSRUWDQW UHVHDUFK LV LI we’re to overcome breast cancer by 2050. There are only a few tables remaining for the 20th anniversary Pink Ribbon Ball. For tickets/tables, please call 020 7749 4114, or email pinkribbonball@ breastcancercampaign.org

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Thank you!

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We’re so grateful to our partners and everyone who has supported them. With their help, we have achieved so much Write on! Pentel has raised £1 million for Campaign! To mark this fantastic achievement, former Strictly star and Campaign supporter Camilla Dallerup has recreated the iconic image from American Beauty using Pentel’s pink EnerGel pens (main picture). Pentel’s success was recognised at our annual thank-you reception at the House of Lords in May, where Eiichi Hatsumi and Wendy Vickery received the award for Corporate Partnership Outstanding Achievement (right). Pentel has helped

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fund our potentially life-saving breast cancer research projects for eight years. It has sold over 4.9 million pink pens which, placed end to end, could scale France’s highest mountain, Mont Blanc,154 times! Thanks also to Pentel’s staff, who dressed up as pink pirates and hippies for wear it pink in October. See page 29 for the latest Pentel pink EnerGel pen.

ASDA Now in its 18th year, Asda’s Tickled Pink campaign has raised £38 million for Breast Cancer Campaign and Breast Cancer Care, helping to make a huge difference to people affected by breast cancer in the UK. Today, every Asda store has a Community Life Champion who is dedicated to co-ordinating the customer and colleague fundraising activity in their store. Paul Kelly, Asda’s External Affairs and Corporate Responsibility Director, recently spoke about how important the Community Life programme has been for growing the level of dedication for Tickled Pink. Thank you to everyone at Asda for their support.

Photo: Swindon Advertiser

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MRS CRIMBLE’S A huge thank you goes to Mrs Crimble’s, the much-loved, gluten-free bakery brand, for sponsoring a series of student megaraids and helping us to raise vital funds for research through these large-scale bucket collections. If you were in central Manchester, London or Cardiff in recent months, then you may have spotted our large gatherings of enthusiastic student

fundraisers. Of course, it can be hungry work encouraging passers-by to donate, but thankfully Mrs Crimble’s had provided plenty of delicious treats to help keep everyone going, DQG WKH PRQH\ ÀRZLQJ in. Thank you to all the students who took part for their support.


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STUDENTS MAKING THE GRADE We wish ‘bonne chance’ to all those fundraisers who are challenging themselves this summer – and beyond

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undreds of Campaign-supporting students are showing they’ve got ¿W ERGLHV DV ZHOO DV DJLOH PLQGV E\ JRLQJ DOO RXW DQG WUDLQLQJ KDUG WR WDNH RQ WKH /RQGRQ WR 3DULV &\FOH 5LGH RU RXU ,QFD 7UHN 7KH F\FOLVWV ZLOO EH VHWWLQJ RII RQ -XQH FRYHULQJ PLOHV RYHU WKUHH GD\V ¿QLVKLQJ DW WKH (LIIHO 7RZHU 5DFKDHO /\QFK IURP /RXJKERURXJK 8QLYHUVLW\ FDQ¶W ZDLW WR JHW VWDUWHG μ,¶P VXSHU H[FLWHG DERXW WKH ULGH ¶ VKH VD\V μ, FDQ¶W ZDLW WR PHHW DOO P\ IHOORZ F\FOLVWV DQG HQMR\ WKUHH GD\V ULGLQJ WKURXJK WKH EHDXWLIXO (QJOLVK DQG )UHQFK FRXQWU\VLGH ¶ 0HDQZKLOH RXU LQWUHSLG WUHNNHUV ZLOO KHDG RXW WR 3HUX ODWHU WKLV VXPPHU WR PDNH WKH FKDOOHQJLQJ KLNH WR WKH VWXQQLQJ DQFLHQW FLW\ RI 0DFKX 3LFFKX %\ WKH WLPH WKH\ GHSDUW WR HLWKHU )UDQFH RU 3HUX WKLV JUHDW JURXS RI VWXGHQWV ZLOO KDYH UDLVHG RYHU IRU &DPSDLJQ¶V OLIH VDYLQJ EUHDVW FDQFHU UHVHDUFK ± LQFUHGLEOH 6R JRRG OXFN WR DOO WKH VWXGHQWV IURP WKH SDUWLFLSDWLQJ XQLYHUVLWLHV /RXJKERURXJK 1RWWLQJKDP 3RUWVPRXWK 6RXWKDPSWRQ <RUN :DUZLFN 6RXWK :DOHV %ULVWRO &DPEULGJH %DUWV DQG WKH /RQGRQ 6FKRRO RI 0HGLFLQH DQG 'HQWLVWU\ 8QLYHUVLW\ RI (DVW $QJOLD %LUPLQJKDP .HQW 6KHI¿HOG +DOODP 6WDIIRUGVKLUH /RQGRQ 6FKRRO RI (FRQRPLFV DQG %33 8QLYHUVLW\ <RXU KDUG ZRUN ZLOO PDNH D UHDO GLIIHUHQFH WR WKH OLYHV RI SHRSOH ZLWK EUHDVW FDQFHU

WANT TO FIND OUT MORE? For more information on these challenges and the many other ways of supporting Breast Cancer Campaign at your university, check out the student fundraising pages at breastcancercampaign.org

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Take on an exciting challenge

TURN OVER A NEW LEAF From jumping out of a plane to cheering on supporters at our events, there are plenty of exhilarating ways you can get involved for Campaign this autumn

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FACE YOUR FEARS Help us turn the sky pink this Breast Cancer Awareness Month by signing up to freefall 10,000ft as part of the Big Pink Jump. The parachute jumps will be happening all over the country, so sign up to take part in this thrilling event and raise vital funds. Lara from Essex joined the Big Pink Jump last year. She says: ‘I managed to raise over £500 and hope others will be inspired to take part and help raise more money!’ All you have to do is register with Skyline Events, which organise the jumps, and raise a minimum of £395. See our website for details.


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BECOME AN EVENT VOLUNTEER

If you’d like to try something new, meet like-minded people and have fun, then becoming an event volunteer could be perfect for you. By giving your time to Campaign, you’ll be helping supporters to make the most of our fundraising events. <RX GRQœW QHHG VSHFL¿F H[SHULHQFH – just enthusiasm and a big smile! After you sign up, you’ll receive an email when there’s an opportunity to get involved near you. It’s up to you which activities you’d like to do and how much time you give. Stacy-Ann Chambers from London has been an event volunteer VLQFH Ο0\ ¿UVW H[SHULHQFH ZDV cheering on runners at the Royal Parks Foundation Half Marathon,’ VKH H[SODLQV Ο, ZDV FKHHULQJ VR loudly I surprised myself! It was a lot of fun and I felt great. Volunteering for Campaign has helped me to gain FRQ¿GHQFH (YHU\RQH LV VR IULHQGO\ that you can’t help but smile too. I would recommend being an event volunteer to anyone.’ 7R ¿QG RXW PRUH VHH RXU ZHEVLWH

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GET MUDDY Why not take on a 5km or 10km cross-country obstacle course and help raise vital funds for Campaign? Designed by British Military Fitness, the Major Series is a demanding challenge – but as you crawl through tunnels, clamber up hills DQG ZDGH WKURXJK PXG \RXœOO ¿QG you have a lot of fun too! There are three Major Series events taking place across the UK this autumn: in Warwickshire on 27 September, in Kent on 4 October and West Yorkshire on 12 October. 7R VLJQ XS RU WR ¿QG RXW PRUH visit majorseries.com

JOIN US AND DO YOUR BIT We really need your support to help us keep up our groundEUHDNLQJ UHVHDUFK 7R ÂżQG RXW more about our events and the many exciting ways you can get involved, please visit breastcancercampaign.org

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WHAT LEGACY WILL YOU LEAVE? After breast cancer and a difficult road to recovery, Sue Stannard is leaving a gift in her Will to Campaign

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espite having a history of breast cysts, Sue says she never worried about lumps and bumps. So when, in October 2010, she felt a bit of lumpiness in the same place where she’d had a recurring cyst, she just thought it was scar tissue. ‘I was referred to the breast FOLQLF DQG DFWXDOO\ GHFOLQHG WKH ¿UVW appointment offered because I had planned a Christmas shopping trip, which shows how unconcerned I was,’ says Sue. But on 4 January 2011, the radiographer told Sue there was something on her glands that she needed to biopsy, and Sue just knew that all was not well. Sure enough, three days later Sue found out she had breast cancer and that the cancer had spread to her lymph glands. ‘I had a bit of an emotional shutdown then,’ she says. ‘It was weird. Because my husband,

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STRIKE A POSE! Sue poses for Woman & Home magazine after being chosen to star in their ‘body FRQ¿GHQFH DIWHU breast cancer’ feature in October 2013


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Phil, and I both have business brains, we treated it like a project. We created a list of what we had to do, including questions like “how do we tell the family?â€?.’ Sue underwent four cycles of chemotherapy, which involved treatment followed by a three-week rest, followed by a second dose and VR RQ ,W ZDV D GLIÂżFXOW WLPH $V 6XH H[SODLQV Îź$OO WKH VNLQ RQ P\ KDQGV started peeling off. It looked like I’d held them in a bowl of boiling water.’ Sue also lost her hair and decided to wear a wig, but recalls with humour KRZ KHU QLHFHÂśV ER\V VDLG Îź$XQWLH Sue’s hair comes off.’ However, a serious blow for Sue came when an ultrasound scan revealed that the chemo didn’t appear to be working. Surgery was the only option and so, in May 2011, Sue had a mastectomy. $IWHU H[WHQVLYH UHVHDUFK 6XH decided on a skin-preserving mastectomy, which would reduce scarring and set the course for her reconstruction just over a year later. But nothing could prepare her for how she would feel after the mastectomy. ‘It was horribly painful – the temporary implant felt like a lump of lead in my chest and I couldn’t look at my scar for a week,’ she says. ‘When I was feeling down

‘I won’t need the money when I’m gone but through a gift in my Will, I can do something meaningful’ one day, I told Phil that I was bloated, bald and felt deformed. He replied, “That’s just how I like my women!� Phil wouldn’t let me wallow in my cancer, and humour was our way of dealing with the bad stuff.’ $OWKRXJK 6XH VD\V WKDW VKH LV DW relatively high risk of getting cancer again, she doesn’t let it make her paranoid or affect the way she lives day to day. In fact, she says that having had cancer has only

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A quick guide to leaving a gift in your Will

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BRAVE SMILES Sue at the Race for Life in Lincoln just six weeks after her mastectomy, and in hospital the day after the operation

increased her positivity. ‘I’ve just turned 61 and Phil is 68,’ she explains. ‘We just want to go out, enjoy ourselves and do things.’ One of those things includes leaving a gift to Breast Cancer Campaign in her Will. ‘I already had included charitable gifts in my Will, but I wanted to focus more on giving to breast cancer charities after my diagnosis,’ she explains. Sue knows there are breast cancer charities that provide fantastic support for women after WKH\ÂśYH EHHQ GLDJQRVHG EXW ÂżUPO\ believes that it’s research that saves lives. She explains: ‘I’ve become very focused on breast cancer research and I’m really excited about the developments going on. I’d like to be a part of that, even when I’m not around any more.’ She continues: ‘It makes sense to me to do something positive for a cause that meant a lot to me during my lifetime, and I think it’s very important to give something back. I won’t need the money when I’m gone, but by leaving a gift in my Will I can do something more meaningful and substantial.’

e know that when writing a Will, your family and friends will be your priority. But once you’ve looked after them, could you consider leaving Campaign a gift, like Sue? Whether you have already written your Will or are still getting round to it, we can help. And because we know what an incredibly personal decision it is, we make important promises to all of our legacy givers... Q We will spend your legacy on world-class breast cancer research. Q You can choose an area of research that you would like your gift to be used on – for example, genetics. Q We can arrange for you to meet our scientists and ¿QG RXW PRUH DERXW WKH type of research your money could fund. Q You can choose how much you want to hear from us about how gifts are funding research.

FIND OUT MORE TODAY If you’d like more information about leaving a gift in your Will, visit breastcancer campaign.org/donate, call us on 020 7749 4114, or email legacies@breast cancercampaign.org

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its full potential. Published in 2011, WKH %&46 LGHQWL¿HV VWDWHPHQWV of high-quality care and treatment that breast cancer patients should expect. However, because the BCQS is only guidance, data on performance against these statements is not routinely collected. 7KLV PHDQV LW¶V GLI¿FXOW WR FRPSDUH how different trusts are doing. To address this, we analysed data from relevant questions in the Cancer Patient Experience Survey (CPES) – a survey of cancer patients in England which asks about the care and support

‘OUR RECENT REPORT HIGHLIGHTS THE URGENT NEED TO DELIVER BETTER CARE’

ROOM FOR IMPROVEMENT We want to raise the standard of care for breast cancer patients

Shaping policy

WORKING TOWARDS CHANGE Our new report sets out how to improve care for women with breast cancer

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new report by Campaign has highlighted key actions needed to ensure that women with breast cancer receive the highest standard of care. Finding the cures, improving the care LGHQWL¿HV 16 recommendations for the National Institute for Health and Care Excellence (NICE), NHS England and local health commissioners. It follows up on recommendations made in our +HOS XV ¿QG WKH FXUHV action plan, which outlined steps that need to be taken to achieve our goal of overcoming breast cancer by 2050. The new report looks at whether the NICE Breast cancer quality standard (BCQS) is being used to

WKH\ UHFHLYH 2XU ¿QGLQJV KLJKOLJKWHG variations in the provision of breast cancer services across England. It showed that not only should more be done to monitor providers on their performance against the BCQS, but also that there are VLJQL¿FDQW JDSV LQ WKH LQIRUPDWLRQ collected about how services are performing. Campaign’s Chief Executive, Baroness Delyth Morgan, says: ‘Women with breast cancer face many challenges, but poor-quality care should not be one of them. Our report highlights the urgent need for appropriate levers and incentives to be in place to deliver improved standards of care. ‘It’s vital that NHS England undertakes a review of whether services are complying with the Breast cancer quality standard so it can be used to its full potential to drive real improvements for women affected by breast cancer.’ If you’d like to read the report, visit breastcancercampaign.org


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Shaping policy

MAKING STEPS TO IMPROVE GIFT AID We have joined a Government group to ensure we’re on track to improve the Gift Aid scheme for charities

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ampaign is continuing to call for improvements to the Gift Aid scheme, and is part of a new Government Gift Aid working group, which aims to look at ways the initiative could be made better. Established earlier this year, the group is considering how to improve the use of the Gift Aid scheme by increasing awareness, addressing the barriers that donors and charities face when using the scheme, and reviewing the wording of the declaration that donors have to complete when asking for Gift Aid to be added to their donation. The working group, announced in the Chancellor’s Autumn Statement in December, was created in response to concerns raised by those contributing to the Government’s Gift Aid and Digital Giving consultation last year. We responded to this consultation and used the opportunity to highlight our call for changes to make it easier for charities to claim Gift Aid on small workforce donations, as well as our wider concerns about whether donors are fully DZDUH RI WKH VFKHPH DQG LWV EHQH¿WV :H KRSH WKLV DFWLYLW\ ZLOO EHQH¿W PDQ\ FKDULWLHV LQFOXGLQJ &DPSDLJQ and help us to increase our investment into research.

MAKING IT EASY We’re aiming to make the Gift Aid scheme more effective for charities

KEEP UP TO DATE Breast Cancer Campaign works hard to ensure breast cancer is on the Government’s agenda. To keep up to date on the latest news, visit breastcancercampaign.org.uk

In other news‌

Go-ahead for breast cancer audit Here at Campaign, we are really excited to be involved in the development of a national breast cancer audit, which is expected to get under way later in the year. We’ll be working hard to ensure it produces data which has the greatest potential to drive improvements in

services and outcomes for all women affected by the disease. We hope that the breast cancer audit will play a key role in collecting information about how different health services are performing, so that standards can be improved and all breast cancer patients receive

the care they deserve. The importance of the audit was highlighted in our +HOS XV ÂżQG WKH cures action plan in 2FWREHU 7KHUH were growing concerns that plans for the audit, which had originally been announced by the Department of Health in 2011, had been lost following wide-ranging

changes to the health service. We were, therefore, delighted by the Government’s announcement a few months after our report was published that funding for the audit had been agreed. We’ll keep you updated in future issues as the audit progresses.

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Q&A

DR RICHARD BERKS Research Communications Officer shines a light on secondary breast cancer What is it? Secondary breast cancer, also referred to as metastatic breast cancer, occurs when the cancer spreads to other parts of the body. Why does it develop? We don’t know, but the cancer may have spread before, during or after treatment from the breast, perhaps because the cancer cells became resistant to treatments. Where is it most likely to spread to first? It varies, although the most common places are the bones, lungs, liver and brain. In about 70 per cent of patients, it has spread to the bone (read about Dr Shore’s research on p20). How common is it? Almost all of the 12,000 people who die of the disease each year in the UK do so as a result of secondary breast cancer. Why can’t it be cured? There are a variety of reasons why it can’t be cured. The complex nature of the disease once it has spread means the treatments

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we currently use can’t eradicate secondary breast cancer or keep LW DW ED\ LQGH¿QLWHO\ While surgery can be one way to treat primary breast tumours, it’s less effective to operate on secondary breast tumours elsewhere in the body as they may be inaccessible or dangerous to remove. Tumours can also become resistant to treatments. What specific needs does someone with secondary breast cancer have? People will have a variety of needs. For example, patients with secondary tumours in the bone are at an increased risk of fractures, so they may take drugs to strengthen their bones. Tumours elsewhere in the body will have their own effects, so additional support or treatment is needed. Diagnosis can also cause emotional issues and impact on relationships. And many people may also discuss options for palliative care and pain management, allowing them to maintain quality of life as their disease progresses.

SPREAD THE WORD

We’re launching a new campaign to highlight the fact that women in the UK still die of breast cancer, and to call on everyone to take action and help us find the cures

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ach year, about 12,000 women in the UK die of breast cancer – and the main cause of death is secondary breast cancer. This occurs when the disease spreads from the breast to other parts of the body, such as the bones, lungs and brain. It can sometimes be treated and controlled, but it can’t be cured. That’s where Breast Cancer Campaign comes in. By 2020, we hope that 25 per cent fewer people will develop secondary breast cancer, and that by 2030 more than half of those who develop it will survive EH\RQG ¿YH \HDUV 7R DFKLHYH WKLV ZHœUH UHQHZLQJ our focus on beating secondary breast cancer – and we need your support now more than ever. Our latest campaign launches this month to highlight the fact that women are still dying of the disease, while calling on everyone to take action and help us beat breast cancer. We believe research is the key to giving secondary breast cancer patients the support and help they need. Simply email policy@breastcancercampaign.org WR MRLQ RXU FDPSDLJQ DQG \RXœOO ¿QG RXW PRUH DERXW ZKDW \RX FDQ GR LQ WKH ¿JKW DJDLQVW EUHDVW FDQFHU Together, we can overcome it.

In her own words

SHONAGH’S STORY

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honagh Eastwell was diagnosed with secondary breast cancer ZLWKLQ VL[ PRQWKV RI ÂżUVW being told she had breast cancer. This shocking diagnosis came after she had been suffering from violent headaches in the summer of 2010. She was only 37 years old. Now 41, Shonagh is

still alive thanks to new research, but her journey has not been easy. ‘The hardest thing about having secondary breast cancer is the effect it has on you physically and emotionally, as well as how it affects other people,’ explains Shonagh. ‘I don’t know


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WHERE ARE WE NOW? We are working hard to beat secondary breast cancer, but with your help we can do even more

TREATMENT We are researching new therapies and combinations of existing drugs to optimise the treatment that patients receive

FUNDING So far, Campaign has invested ÂŁ7.5 million into research to tackle secondary breast cancer

OUR AMBITION In the next 10 years, we want to increase IXQGLQJ WR PLOOLRQ WR ÂżOO WKH JDSV in tackling secondary breast cancer

TISSUE BANK Expanding our collection of secondary breast cancer tissue samples will help improve our understanding of the disease

SECONDARY SPREAD The disease spreads to the bone in about 70 per cent of patients. Other common sites are the lungs, liver and brain

RESEARCH :H KDYH LGHQWLÂżHG D QXPEHU RI PROHFXOHV that help breast cancer to spread, and we are now looking at how to block them

whether I’ll get to do the things I want to with my daughter, so it’s about making every day count.’ That’s why, for patients like Shonagh, research is absolutely

vital. ‘My current treatment is helping me, and that’s down to work being done in the lab,’ she says. Shonagh agreed to take part in our secondary breast cancer fundraising campaign in March. Her photo was used on trains in the South East, and on our website and social media channels to help

raise awareness of the disease and support research through a text donation. ‘I received so many messages of encouragement,’ recalls Shonagh. ‘And I really hope people support this new campaign to raise more awareness, and give hope to women living with secondary breast cancer.’

HELP US GET WHERE WE WANT TO BE We need a renewed focus on beating breast cancer. That’s why we’re making sure you’re WKH ¿UVW WR NQRZ DERXW RXU plans, and inviting you to help us deliver them. To join our campaign network, email us at policy@ breastcancercampaign.org then keep an eye out for an email from us with more information on how we can work together to achieve our goal. It’s as simple as that.

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Why changed bodies means changed lives PROFESSOR DIANA HARCOURT’S RESEARCH WILL HELP WOMEN TODAY, AND THE 1.2 MILLION PEOPLE LIVING WITH BREAST CANCER BY 2030 Photography by Lottie Davies

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t Campaign, we don’t just fund cancer journey, and it’s crucial that psychosocial UHVHDUFK WKDW IRFXVHV RQ ÂżQGLQJ WKH studies get funding. More people are being cures. We also feel it’s important to diagnosed with breast cancer each day and we support projects that look at how must make sure the psychological support is there.’ breast cancer and its treatments The charity has funded other PhDs under affect patients emotionally – projects like those Professor Harcourt’s supervision. One study headed up by Professor Diana Harcourt at the looked at black and south Asian women’s Centre for Appearance Research at the University experiences with breast cancer, while her of the West of England (UWE), in Bristol. current PhD student is investigating how breast ‘In the past, research on body image was seen cancer patients affected by hair loss could as a bit frivolous,’ says Professor Harcourt. ‘But our be better supported emotionally. studies aren’t about looking good. They focus on Îź, ÂżQG LW LQWHUHVWLQJ WKDW IRU D ORW RI ZRPHQ RQFH something which I believe is fundamental – how their treatment is complete people tell them, “It’s so you feel about your body. And over the years, ZRQGHUIXO \RXÂśUH ÂżQH ´ %XW WKHVH ZRPHQ FRXOG EH health professionals have started to realise how struggling with their appearance. The way they much this affects breast cancer patients.’ look and feel may have changed a lot since their Professor Harcourt’s initial diagnosis, and that interest in this area began can serve as a constant 20 years ago while in her reminder of what they’ve ‘A PATIENT’S APPEARANCE CAN been through,’ she says. ÂżUVW MRE DV D UHVHDUFKHU ‘I was working on a project ‘At the moment, support BE A CONSTANT REMINDER OF about women’s experiences for women affected by WHAT SHE’S BEEN THROUGH’ hair loss focuses on of breast cancer diagnosis ZKHQ , ÂżUVW EHFDPH DZDUH teaching women about of breast reconstruction. wigs, bandanas and I started looking into it and soon realised there make-up. From a psychological point of view, this was very little research on the psychological FRXOG EH LQWHUSUHWHG DV EHLQJ DERXW FDPRXĂ€DJH aspect surrounding reconstruction.’ and hiding the fact you’ve lost your hair, rather This spurred her into completing a PhD looking than how to manage your emotions.’ at how women decide whether or not to have The study is ongoing, and a practice called reconstructive surgery. Then, about 15 years expressive writing – where a patient writes about ago, Professor Harcourt became a lecturer at their emotions for 20 minutes a day for three UWE, which has allowed her to continue to consecutive days – is currently being reviewed. research how women with breast cancer respond This could provide a simple and very effective emotionally to changes to their appearance. way of helping women to come to terms with the &DPSDLJQÂśV ÂżUVW LQYROYHPHQW ZLWK 3URIHVVRU changes to their appearance, and how they Harcourt was to fund a PhD studentship deal with this emotionally. investigating women’s experiences with ductal ‘There may be other approaches, but what carcinoma in situ, or DCIS (this project, by Dr Fiona I like about the expressive writing is that it’s Kennedy, was featured in our summer 2012 issue). straightforward,’ says Professor Harcourt. ‘And if it ‘That’s one of the great things about Campaign,’ has the potential to help a lot of women with breast she says. ‘It backs projects right through the cancer – even just a bit – then it’s worth doing.’

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WE ARE FAMILY Dr Paul Shore and his wife Linda have been through GLI多FXOW WLPHV but are now UHOLVKLQJ IDPLO\ OLIH

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‘When we found out my wife had breast cancer, my research suddenly felt much more personal’ 'U 3DXO 6KRUH KDV DOZD\V EHHQ SDVVLRQDWH DERXW EUHDVW FDQFHU UHVHDUFK EXW ZKHQ KLV ZLIH /LQGD IRXQG D OXPS KLV ZRUN VXGGHQO\ WRRN RQ D QHZ PHDQLQJ Words: Lisa Paul Photography: Lottie Davies

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or Dr Paul Shore, the drive to help breast cancer patients through research is what motivates him every day. It’s vital work – and it became personal in August 2008, when his wife Linda found KDV VSUHDG WR WKH VNHOHWRQ Îź7KHUH DUH WZR a lump in her breast. types of cells in the bone,’ Dr Shore continues. Dr Shore has been involved in various ‘Osteoblasts make bone, and osteoclasts projects, and in May this year he embarked on break down bone. Breast cancer cells a new three-year research grant, funded by stimulate osteoclasts to break down bone, Campaign. With his team at the University of while inhibiting osteoblasts from producing Manchester, he hopes to understand how two bone to replace it. It’s a double whammy. proteins called Runx2 and CBFČ• are involved The patient starts to lose bone around in the spread of breast cancer to the bones. the breast tumour, which leads to bone ‘In 2003, we discovered that fractures. It can be very Runx2 was found in breast cells,’ ‘It’s been a hard painful and debilitating.’ Dr Shore explains. ‘Runx2 is That’s where Dr Shore’s work journey but my FRPHV LQ Îź:HÂśUH WU\LQJ WR ÂżQG what we call a master regulator of the skeleton, which means it understanding out which genes Runx2/CBFČ• LV interacts with another protein, switching on to allow breast of breast cancer cancer cells to occupy the bone,’ CBF-beta (CBFČ• to switch on genes to tell bone cells to make has meant we’ve he explains. ‘So far we’ve bone. Together they form a discovered that a protein called known where Runx2/CBFČ• complex, which sclerostin, made by breast cancer we found in breast cells. We we’re going – and cells, prevents the production of then realised that breast cancers osteoblasts. The hope is that we that has helped’ might be able to target different spread to the skeleton because they’re being tricked into thinking genes with drugs in future. And they’re bone cells, rather than breast cells. LW ZRXOG EH HYHQ EHWWHU LI ZH ÂżQG RXW KRZ WKH ‘Osteoblasts are cells that make the skeleton, Runx2/CBFČ• complex switches on genes so and breast cancer cells use some of the same we can prevent breast cancer cells moving to genes as osteoblasts under the control of the WKH ERQHV LQ WKH ÂżUVW SODFH Âś Runx2/CBFČ• FRPSOH[ 7KLV PHDQV WKH EUHDVW Until his wife’s diagnosis, Dr Shore’s cells become more bone like, allowing them experience of breast cancer had been at a to survive when they move to the skeleton.’ SXUHO\ VFLHQWLÂżF OHYHO Îź$V D UHVHDUFKHU , ZDV working at a bench with molecules and cells, 7KH ÂżQGLQJ ZDV D VLJQLÂżFDQW EUHDNWKURXJK not patients. But now I’ve been able to see the 5HFHQW ÂżJXUHV VXJJHVW WKDW XS WR SHU human impact, and what patients go through,’ cent of people with secondary breast cancer he says. ‘Linda’s cancer has given me a far have bone metastases (when the cancer

WHAT ELSE ARE WE DOING?

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%XW ÂżUVW /LQGD DQG 3DXO IDFHG WKH GLIÂżFXOW WDVN of telling their children William and Beccy, who were just eight and six. ‘My twins from my previous marriage, Dean and Daniel, were 16 so they knew,’ says Linda. ‘But up until that stage, Paul and I hadn’t told Will and Beccy. We knew my appearance would change after the mastectomy and chemotherapy, so I sat with them and read a kids’ book called Mummy’s Lump, which made it easier. Will’s as sharp as a tack and already knew something was up – he’d questioned Paul on the way to school one morning!’

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greater understanding of the disease. It’s taken aul agrees that telling the kids was the me from molecules and cells to real people.’ worst part: ‘Will went to Scouts the same The couple, who live in Rossendale Valley, day I spoke to him, and when someone Lancashire, married 15 years ago. They met asked him where his mum was, he replied: at the leading Walter and Eliza Hall Institute “Oh, she’s got breast cancer!â€? as if of Medical Research in Linda’s native Australia, where she was ‘Telling the kids it was a common cold! We had to limit the details we gave them at working as a research technician was the worst that age because we didn’t know and Paul was doing a three-year how it was going to pan out.’ post-doctorate. part. We had Linda’s surgery went well, and ‘I found a lump out of the blue,’ to limit the she had chemotherapy at The Linda recalls. ‘I had it tested the Christie hospital. ‘It drained my same day, and quickly found out information energy,’ she says. ‘I’d plummet for it was a malignant tumour. Once because we didn’t a week, crawl back out, and do it I had that diagnosis, Paul knew what it meant, and as I’ve worked know how it was all over again. But it was never as bad as I thought it would be. It in a cancer research lab, so did I.’ going to pan out’ helped knowing I was in the best From then on, Linda knew she hands – and Paul was there.’ just had to get on with it. ‘We both While Linda recovered, Paul took the children dealt with it differently. At that point I think Paul to school and to their swimming lessons. ‘It IRXQG LW GLIÂżFXOW EHFDXVH KH NQHZ ZKDW ZDV was tough,’ he admits. ‘Friends helped us when coming next. Sometimes he knew too much, I was at work but I had to step up to the mark to but at the same time it meant I was able to ask keep things as normal as possible for the kids.’ all the right questions, and it helped that Paul Today, Linda’s cancer is under control and could explain everything to me,’ she says. the couple are enjoying family life. ‘It’s been ‘I had my lumpectomy at the Wythenshawe D GLIÂżFXOW MRXUQH\ EXW P\ XQGHUVWDQGLQJ RI Hospital under Professor Nigel Bundred, who breast cancer has meant we’ve known where Paul knew through the Manchester Breast we’re going, which has helped,’ Paul smiles. Centre, which co-ordinates the different ‘It has just shown me how important it is to local groups working on various aspects pursue breast cancer research.’ of breast biology,’ Linda continues.

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ut a few weeks after the surgery, Linda was told that her cancer was a different type to the initial diagnosis. ‘It was ERpositive, which meant treating it with tamoxifen,’ she says. ‘And it was invasive lobular carcinoma, UDWKHU WKDQ GXFWDO FDUFLQRPD LQ VLWX '&,6 Lobular cancer is hard to detect because it doesn’t stay in one place. It gets into the breast tissue without necessarily forming a single lump.’ For Linda, there was only one option – a mastectomy and axillary lymph node clearance.

HELP US BEAT CANCER :LWK \RXU JHQHURXV VXSSRUW %UHDVW &DQFHU &DPSDLJQ LV DEOH WR IXQG YLWDO UHVHDUFK E\ VFLHQWLVWV OLNH 'U 3DXO 6KRUH 7KH PRUH ZRUN ZH GR WKH PRUH ZH FDQ KHOS SHRSOH OLNH /LQGD )RU PRUH LQIRUPDWLRQ YLVLW EUHDVWFDQFHUFDPSDLJQ RUJ

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Breast Cancer Campaign’s latest...

CHARITY STARS Thank you to all of our wonderful supporters. Here’s a quick look at what some of you have been doing...

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1 Thurrock Regional Volunteer Group, Simply The Breast, enjoy their coffee morning. 2 A Campaign staff member supports this year’s London Marathon. 3 Dr Niamh 2œ%ULHQ D &DPSDLJQ 6FLHQWL¿F )HOORZ DW 4XHHQœV University Belfast, says thank you for helping raise over £90,000 for Campaign in 24 hours, using the hashtag QRPDNHXSVHO¿H 4 Judy Scrine tackles the freezing North Pole Marathon just days after taking part in the Brighton Marathon. 5 Bouncing participants at the Major Series North in Bramham Park, Leeds. 6 Dr Alison *DUWODQG DW WKH 8QLYHUVLW\ RI 6KHI¿HOG VD\V WKDQNV WR HYHU\RQH ZKR SRVWHG D QRPDNHXSVHO¿H 7 The Pink Champaigners celebrate their auction night in Preston raising over £3,000. 8 Johnny Dodkin is one of six friends ZKR G\HG WKHLU EHDUGV SLQN WR VXSSRUW &DPSDLJQ UDLVLQJ over £5,000! 9 6WXGHQWV IURP /RXJKERURXJK DQG :DUZLFN universities at this year’s Manchester megaraid. 10 Natalie, Laura, Kara and Jim, the Great Dane, at this year’s Merevale Walk in Atherstone. 11 +DUU\ $OIRUG ZLWK friends and family after running the Brighton Marathon.

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QUESTION TIME We love it when you get in touch with your letters and questions. So here’s a pick of our favourites...

LET’S GET READY TO RAFFLE

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DATES FOR THE DIARY Exciting fundraising events, key dates to note, and a look at what’s ahead

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JUNE GENERATIONS WALK

Take part in Generations Walk, the 5km HYHQW RQ /RQGRQ¶V +DPSVWHDG +HDWK DQG KHOS UDLVH IXQGV IRU &DPSDLJQ 3HRSOH RI every age and ability can take part, and WKH PRQH\ UDLVHG IRU UHVHDUFK ZLOO EHQH¿W IXWXUH JHQHUDWLRQV breastcancer FDPSDLJQ RUJ JHQHUDWLRQVZDON

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OCTOBER WEAR IT PINK MEGARAID!

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SEPTEMBER BUPA GREAT NORTH RUN

The Bupa Great North Run is the second biggest half-marathon in the world! Runners take in the sights of Newcastle, including the iconic Tyne Bridge, before ¿QLVKLQJ RQ WKH FRDVW LQ 6RXWK 6KLHOGV <RX FDQ H[SHFW cheering crowds all the way around and we’ll be there WR FHOHEUDWH ZLWK \RX DW WKH ¿QLVK EUHDVWFDQFHUFDPSDLJQ RUJ JUHDWQRUWKUXQ

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SEPTEMBER LONDON TO BRIGHTON CYCLE

Breast Cancer Campaign’s main fundraising event wear it pink returns on Friday 24 2FWREHU +DYH IXQ E\ MRLQLQJ WKRXVDQGV RI RXU SLQN VXSSRUWHUV DQG ZHDU SLQN WR WKH RI¿FH DQG WR VFKRRO RU KROG DQ HYHQW DW KRPH +RZHYHU \RX FHOHEUDWH MXVW PDNH VXUH \RX donate and help us fund even more OLIH VDYLQJ EUHDVW FDQFHU UHVHDUFK ZHDULWSLQN RUJ



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