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Ovarian cancer research our International Forum helps to improve knowledge

Ovarian Cancer Awareness Month Strictly Come Dancing’s Kristina Rihanoff supports our campaign!

w ww.ovaria n.org .u k funding research | raising awareness | giving a voice

NEWSLETTER SUMMER 2011


Contents N E W S

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Only at your M&S

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Introducing Simon Denegri

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A new £500,000 grant

Welcome...

– our new shopping partnership

Welcome to Ovarian Cancer Action’s Summer newsletter. As the Chair of Ovarian Cancer Action, I’m immensely proud of the advances we’ve made in recent years to push ovarian cancer up the national agenda. Having lost my mother to the disease I can never be complacent about how much needs to be done to improve women’s chances of surviving ovarian cancer and retaining a high quality of life. But I believe we are making progress.

– our new Chief Executive – helping our Research Centre F E A T U R E S

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Making a major contribution

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Oliver Bonas

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Ovarian Cancer Awareness Month

– meet some of our major donors – a flourishing corporate partnership

– another fantastic campaign!

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International Forum

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The Gold Challenge

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My story: Solvej Biddle

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New NICE guideline

– pursuing a strategy for progress – 100 places for Ovarian Cancer Action – read Solvej’s story – diagnosis and early treatment F U N D R A I S I N G

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London Marathon 2011

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Tribute Funds

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New recycling partnerships

It’s with a sense of tremendous optimism that I welcome Simon Denegri to the charity as Chief Executive. Simon arrives at an exciting time – when we’ve made great strides in raising awareness of ovarian cancer, and when the Ovarian Cancer Action Research Centre, together with the international scientific community, is doing so much to improve our understanding of the disease and deliver better treatment options. I’m certain that Simon’s impressive experience working with medical research charities will be a tremendous asset to our organisation. You can read more about Simon on page 3. Earlier this year I attended the Helene Harris Memorial Trust Forum in Florida, which brought together the world’s thought leaders in the field of ovarian cancer research. It was an incredibly exciting few days, and I report on the meeting on page 10. This edition of our newsletter also brings you a report on our achievements during Ovarian Cancer Awareness Month in March (see page 8). None of our achievements would be possible without your involvement – thank you for making March such a success and thank you for everything you do. Your dedication and support makes all the difference!

– our largest team of runners – remembering a mum – recycle and raise funds!

Allyson Kaye Chair

Contact us Ovarian Cancer Action 8-12 Camden High Street London NW1 0JH Tel: Fax: Email: Visit:

0300 456 4700 0300 456 4708 info@ovarian.org.uk www.ovarian.org.uk

Registered charity no. 1109743

Trustees Allyson Kaye (Chair) Daniel Harris John Harris CBE Martin Paisner CBE Emma Scott Lord Turnberg of Cheadle Disclaimer It should be noted that inclusion in the Ovarian Cancer Action newsletter does not imply endorsement of a participating organisation or its products. Newletter production Consultant: Sam Gibson Production Editor: Charlotte Williams Design: www.joannewood.co.uk Photography: Dan Tsantilis

HELP US SPREAD THE WORD!

Can you help us raise awareness of ovarian cancer and its symptoms, and funds to help us continue our work? Giving copies of this newsletter to your friends, your local library or doctor’s surgery, will tell more people about ovarian cancer and the work we do. Call us today on 0300 456 4700 or return the tear off slip if you’d like us to send you some extra copies to distribute. Follow us on Facebook at www.facebook.com/ovariancanceraction or follow @OvarianCancerUK on Twitter – and encourage your friends to follow us too. Everyone should talk about it* Ovarian cancer has some very clear symptoms, even in its earliest stages. We want every woman to know these symptoms, remember them, and pass them on. Call us on 0300 456 4700 for copies of our symptoms leaflet and help to spread the word.

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Media Medics

In March, as part of our awareness month programme, Ovarian Cancer Action’s Chair, Allyson Kaye, hosted a dinner for a number of high profile media medics and health writers from the national press. The aim was to brief them on the latest developments in ovarian cancer research and enlist their support to help raise awareness of the disease and its symptoms. Five of the country’s key health writers attended, along with six media medics including Dr. Dawn Harper from Channel 4’s Embarrassing Bodies, Dr. Rob

Photograph © Channel 4 Embarrassing Bodies

Hicks and Dr. Ellie Cannon. The dinner was also attended by Professor Hani Gabra and three of his team from the Research Centre, as well as Ovarian Cancer Action Voices, Rocky Scott and Dr. Jo Sherrington. ‘The dinner was an extremely good way to brief medics and health writers,’ said Allyson. ‘The informal setting gave people time to discuss the issues and understand the progress we’re making with our research. I hope it will be the first of several such events.’

FIND OUT MORE

Ovarian Cancer Awareness Month was even bigger and better this year! Turn to page 8 to read all about it.

Ovarian Cancer Action welcomes new Chief Executive research, which is funded by the National Institute for Health Research (NIHR). Simon has held a succession of senior positions in research charities and health organisations over the last two decades.

Simon Denegri

Ovarian Cancer Action is delighted to welcome Simon Denegri as its new Chief Executive. Simon joins us from the Association of Medical Research Charities (AMRC) where he was Chief Executive since 2006. He is also the Chair of INVOLVE, the national advisory group for the promotion and support of public involvement in

Making the announcement, Allyson Kaye, Chair of Ovarian Cancer Action said: ‘We’re delighted that Simon has agreed to join us. Well funded research into the causes and treatment of ovarian cancer is imperative, and Ovarian Cancer Action is poised for even greater things over the next few years. ‘Simon brings a wealth of experience in both healthcare policy intervention and governance in the medical research charity sector, which is going to be of enormous value to us going forward.’

Only at your M&S! When you next go shopping at Marks & Spencer, look out for some exclusive products being sold to raise awareness of ovarian cancer and its symptoms, and support Ovarian Cancer Action. Since May, selected M&S stores across the UK have been selling a beautiful bead and charm bracelet costing £5, which carries a donation of £1 to Ovarian Cancer Action on every sale. A number of stores also stocked handy pocket nail files and Ovarian Cancer Action’s teal ribbon pin badges – both of which carried a suggested donation of £1.

M&S is also raising awareness of ovarian cancer amongst staff by holding a health awareness presentation and a Cupcake Break at the company’s London head office. Nina Gopal, Head of Fundraising at Ovarian Cancer Action, said: ‘More than 21 million people visit Marks & Spencer stores each week, so this is a tremendously exciting opportunity for us to communicate with millions of customers and staff about ovarian cancer, its symptoms and the need to be aware. At the same time we’ll be raising vital funds for research through the sale of some exclusive products.’

To find out more about Ovarian Cancer Action, visit www.ovarian.org.uk

£5

INCLUDES £1 DONATION

SHOW YOUR SUPPORT!

Keep a look out for the bracelets supporting Ovarian Cancer Action at your M&S. They'll be on sale for a few more weeks, with more products available in the future.

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London calling! Ovarian Cancer Action has relocated to smart new office space in Camden, London NW1.

Our new office

MyDonate – a new online fundraising service that will raise more money Ovarian Cancer Action is delighted to be one of the first charities to partner MyDonate, BT’s new online fundraising tool which was launched recently. MyDonate will compete with JustGiving and Virgin Money Giving, but it’s the first online fundraising service not to charge charities a subscription fee, set-up fee, or take commission – so 100% of donations received via the

service will go to help Ovarian Cancer Action’s vital research and awareness work. JustGiving currently charges a £15 monthly fee to charities, and takes a 5% commission on all donations; whilst Virgin Money Giving charges a £100 set-up fee and a 2% commission. MyDonate charges a processing fee for credit card payments, but that will be lower than, or equal to that of its competitors.

Nina Gopal, Head of Fundraising at Ovarian Cancer Action commented: ‘Ovarian Cancer Action will continue to receive funds via JustGiving and Virgin Money Giving, as we always have done. But we’re hopeful that BT’s MyDonate will make fundraising easier and more accessible for our supporters who want to raise funds to help our work, whilst challenging competitors to provide a more cost-effective way to help charities.’

FIND OUT MORE

Allyson Kaye, Ovarian Cancer Action’s Chair said: ‘It’s great to be so conveniently located in the heart of London. The move was seamless and the team has already settled in our new office. ‘We’re now closer to many of the individuals and companies we work with on a daily basis, and we can get to the Ovarian Cancer Action Research Centre in Hammersmith with ease. The move will really help our plans for growth and making an impact.’

To make a donation, sponsor a fundraiser or create your own fundraising page visit www.btplc.com/mydonate

£50,000 grant for Research Centre We are hugely grateful to award winning healthcare provider, Simplyhealth, which has made a grant of £50,000 to the Ovarian Cancer Action Research Centre.

MAKE A NOTE!

Please make a note of our new address and contact details, which are: 8-12 Camden High Street London NW1 0JH Telephone: 0300 456 4700 Fax: 0300 456 4708 Email: info@ovarian.org.uk Website: www.ovarian.org.uk

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This generous donation will help to fund research into why 70% of ovarian tumours become resistant to chemotherapy over time. The Ovarian Cancer Action Research Centre is carrying out groundbreaking work to develop new

treatments to overcome this problem and allow chemotherapy to be successful once again. The grant from Simplyhealth will support the next stages of the research programme, including new patient trials.

Mark Day, from Simplyhealth, said: ‘We are delighted to offer our support to Ovarian Cancer Action. This programme of work is crucial in the development of alternative treatment for women with platinum-resistant ovarian cancer.’

SUPPORT OUR RESEARCH

Donations from supporters and fundraisers are vital to help our research work continue. Please send a donation today using the donation form at the back of this newsletter. Or contact Hannah Greenshields for help with any fundraising projects. Email her at hgreenshields@ovarian.org.uk or call 0300 456 4704.

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Making a major contribution The Ovarian Cancer Action Research Centre is a leader in its field, working to improve the accuracy of detection and the treatment of ovarian cancer in the hope that, ultimately, we can drive up survival rates for women with the disease.

Ovarian Cancer Action’s laboratories at the Research Centre

In 2009, the Research Centre moved into new state-of-the-art laboratories at Imperial College London, Hammersmith Campus. The move has enabled the team to double in size, and Professor Hani Gabra now heads 48 scientists organised into 11 research groups. These developments mark milestones for the charity – made possible largely thanks to the incredible generosity of some of Ovarian Cancer Action’s key supporters.

Maurice Wohl Charitable Foundation Vivienne Wohl, wife of the late Maurice Wohl, died from ovarian cancer in 2005, and Ovarian Cancer Action’s laboratory is named in her memory. In 2009 the Foundation gave the charity a £1 million grant to help equip the new Research Centre and support our research. Professor Latchman, nephew of Maurice Wohl and Chairman of the Maurice Wohl Charitable Foundation, says: ‘The Ovarian Cancer Action Research Centre is doing groundbreaking work to improve the diagnosis and

treatment of ovarian cancer. We’re hopeful our grant will help this work continue, and save lives.’ Allyson Kaye, Chair of Ovarian Cancer Action, adds: ‘The everyday running costs of the Research Centre are substantial. The grant from the Maurice Wohl Charitable Foundation was a lifeline when we were preparing to move to our new laboratories and it now helps underpin the day-today work being done there.’

The Mitchell Charitable Trust The Mitchell Charitable Trust supports a diverse range of causes – from education and community charities to overseas aid. In January 2009, the Trust made a grant of £103,663 over three years to help fund the Platinum Resistance Group, which is looking at why ovarian tumours develop resistance to chemotherapy. Ashley Mitchell, Trustee, says: ‘We recognise the importance of research in getting to the root cause of cancer and improving treatments. When my mother, Rose Mitchell, died from cancer, we decided that funding research projects would be a fitting use of

To find out more about Ovarian Cancer Action, visit www.ovarian.org.uk

some of our funds. The work being done at the Ovarian Cancer Action Research Centre is of great interest to us and we were delighted to award the charity a grant.’

The Freemasons’ Grand Charity Funding medical research is a core activity of The Freemasons’ Grand Charity, which provides millions of pounds in funding annually. In 2008, the Grand Charity decided to give £1 million to a charity specifically dealing with a women’s health issue; and after consulting with Freemasons and their wives, the grant was awarded to Ovarian Cancer Action. The money is helping to fund our work to raise awareness of ovarian cancer and supporting research at the Centre, including the Stem Cell Group. ‘The decision to support Ovarian Cancer Action was unanimous, given the prevalence of the disease and the evident need for funding,’ says Laura Chapman, Chief Executive of The Freemasons’ Grand Charity. ‘We’re hopeful that during the five years of this grant it will help lead to possible medical breakthroughs.’

Remaining focused One woman dies every two hours from ovarian cancer. Ovarian Cancer Action is determined to increase funding for the Ovarian Cancer Action Research Centre in order to progress research into the disease. Professor Hani Gabra says: ‘Real breakthroughs have been made in the field of ovarian cancer research in the last few years, and we’re at the cutting edge of this progress.

‘Knowing our funding is secure is absolutely critical so we can remain focused on our work. We’re all so grateful to Ovarian Cancer Action and its supporters, because without their backing our work would be much more difficult.’

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Quirky, individual & interesting Oliver Bonas, the lifestyle shop, is known for its individuality. Three years ago the retailer started supporting Ovarian Cancer Action, and it has been supporting us ever since!

Kristina Rihanoff at Oliver Bonas’s Cupcake Break

The first Oliver Bonas shop opened in Fulham in 1993, and there are now 27 shops around London and one in Windsor, as well as online shopping via their website. The business began because founder, Olly Tress, kept bringing back wonderful gifts for his friends from his travels abroad. And it is that love of everything quirky, individual and interesting which drives the business today.

It started with ‘teal’ The relationship with Ovarian Cancer Action evolved in 2009

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when the Sunday Express ‘S’ magazine ran a feature with a ‘teal’ theme for Ovarian Cancer Awareness Month. They asked Oliver Bonas if they could include one of their beautiful teal velvet jewellery rolls in the promotion – and the relationship was born! Olly Tress says: ‘We could see immediately that Ovarian Cancer Action was a worthwhile cause. But the more we’ve worked with them, the more impressed I’ve been. They achieve incredible results funding medical research and raising awareness.’

A real team effort Since they first decided to support Ovarian Cancer Action, Oliver Bonas have done more to help every year. ‘We love working with Oliver Bonas. They’re all so enthusiastic, and the company and its customers are such fun to work with,’ says Nina Gopal, Ovarian Cancer Action’s Head of Fundraising. ‘It’s a real team effort and everyone gets involved. Each year the shops create truly beautiful window and store displays to promote the items that

raise money for our research and awareness work. And different stores hold their own events and Cupcake Breaks to help us too.’

Celebrity support This year, during Ovarian Cancer Awareness Month, some of the stores enjoyed celebrity support for their fundraising efforts. Zac Goldsmith MP visited the Sheen shop in his constituency, and Kristina Rihanoff, of TV’s ‘Strictly Come Dancing’ fame joined staff and customers in the Victoria store to bring some extra glamour to their Cupcake Break.

funding research | raising awareness | giving a voice


F E A T U R E Kristina says: ‘I really admire Ovarian Cancer Action for the vital research and awareness work they do. And Cupcake Breaks are a wonderful way to support the charity because they’re simple to organise and great fun – and cupcakes are delicious!’

An individual target Individual members of staff at Oliver Bonas have also stepped forward to raise money for Ovarian Cancer Action. Helene Tsouloupas, the company’s Creative Buyer, ran the London Marathon this year. She finished the race in just under four hours and so far has raised nearly £5,000 for the charity. Helene says: ‘When I was 17 I wrote a list of ten things I want to do before I’m 40. Running a marathon was one of them, so it’s brilliant I’ve been able to strike that off the list! ‘I knew it would be hard work, not least because of all the training involved. But I found it very motivating to have a personal connection with the charity I was raising funds for. I know everyone at Ovarian Cancer Action and they really encouraged me throughout my training, and were there to cheer me on the big day. ‘I ran in memory of a very dear family friend, Matilda Batey, who died of ovarian cancer last year; and my grandmother who passed away just a few weeks after Matilda.

‘Working with Oliver Bonas has been a completely positive experience,’ says Nina Gopal. ‘The company has a wonderful community spirit, and they’re always looking for new and different ways to help us. They embrace everything they do wholeheartedly – and that’s the way we work too, so it’s a match made in Heaven.’

Behind the scenes A sense of purpose touches every aspect of the partnership – from choosing the items that will be sold to support the charity, to individual shops deciding what they will do during the awareness month. ‘We feel very close to Ovarian Cancer Action,’ says Olly Tress. ‘It’s a small charity, so everyone who works there is happy to turn their hand to anything. That’s how I started my business, and I enjoy working with people who share the same attitude. We’ve built a really strong relationship over the last few years and I only see things getting bigger and better.’

Zac Goldsmith MP supports our campaign

Go shopping To raise funds for Ovarian Cancer Action, Oliver Bonas’s designers have created this beautiful scented candle. Buy at: www.oliverbonas.com/ jewellery/candle_scented_oliver_bonas.htm

£2

Goes directly to

‘This was my very first marathon, and I haven’t yet decided if it will be my last!’ (You can read more about our marathon runners on page 14.)

More than a ‘fit’ A lot of work goes into running a successful corporate partnership. Of course the ‘fit’ an organisation has with its chosen charity is important, but a successful partnership has more than that.

Lime & Elderflower scented candle £18.50 including a £2.00 donation

For other great products visit our website at: www.ovarian.org.uk /supportus/donate /product

JOIN IN THE FUN!

You can hold your own Cupcake Break to raise funds for Ovarian Cancer Action at any time of year! Visit the website at www.thecupcakebreak.org.uk for ideas, news and recipes – and to download posters and invitations. Or call Hannah Greenshields on 0300 456 4704, or email her at hgreenshields@ovarian.org.uk for more information about how to get involved.

To find out more about Ovarian Cancer Action, visit www.ovarian.org.uk

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What an awareness mon

Ovarian Cancer Awareness Month puts a spotlight on ovarian cancer, and is a really important time for the cha fantastic supporters, the media, politicians, and health professionals to get everyone talking about the symptom has been urgent: early diagnosis saves lives. Twitter, but during the awareness month we ran an intensive social media campaign, which took on a life of its own. We launched a new Facebook app called ireallylike that enables women to connect with their friends to share the symptoms of ovarian cancer. We also refreshed the home page of our website to make it easier for visitors to find up-todate news, and we promoted the Give as you LiveTM app to raise funds for Ovarian Cancer Action. (Turn to page 14 to find out more.)

Dr Pixie McKenna

Giving a voice We secured television interviews with three inspirational supporters.

Louisa on This Morning

Nell McAndrew models our awareness month bracelet

Everyone’s talking! In early March, under the new headline Everyone should talk about it*, we launched a bigger and bolder UK-wide symptoms awareness media campaign (take a look at our new ad on the back of this newsletter). Celebrity model, Nell McAndrew, volunteered to be the face of the campaign, saying: ‘I’m really pleased to be able to help Ovarian

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Cancer Action with such an important health initiative. We must encourage everyone to talk openly about the disease.’

A kick-start We kick-started our campaign by scheduling a radio studio and producer for a day, to conduct live interviews around the country with media medic Dr Pixie McKenna, from Channel 4’s ‘Embarrassing

Bodies’. Pixie spoke to an astonishing 22 radio presenters and participated in a pre-recorded interview that was picked up by a further 40 stations. Many thanks to The Broadcasters for donating the studio and producer, and to Pixie for her word-perfect delivery of symptoms information and directions to our website. Our advertisements appeared in newspapers, magazines and online. Our work to secure free advertising space will continue throughout the year.

We really like Ovarian Cancer Action is already well established on Facebook and

Dr Chris Steele MBE, Patron of Ovarian Cancer Action and resident doctor on ITV’s ‘This Morning’, appeared on the programme with Louisa Spice, who had been diagnosed with ovarian cancer aged just 23. Louisa told her story and explained the symptoms she had experienced. She also encouraged viewers to visit our website and, if they were concerned, to download our Symptom Diary. Tina Grist appeared with Dr Hillary Jones and was interviewed by Lorraine Kelly on ITV’s ‘Daybreak’, whilst Joelle Hill was interviewed by ITV Central News. All these programmes got the symptoms message out across the nation and many viewers went straight to their computers to visit our website for more information, or phoned us. Thank you to all our Ovarian Cancer Voices who helped with media interviews and who wrote articles.

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nth!

rity to spread the word about its vital research and awareness work. This year we worked hard with our ms of ovarian cancer – and we achieved more during the awareness month than ever before. The message

Cupcake Breaks and more Hundreds of our supporters, across the country, held Cupcake Breaks and other events to help us during the awareness month – we’ve been bowled over by everyone’s efforts!

Sponsored walk

Workplace campaign

Symptoms leaflets

What we achieved The awareness month is always a busy time but thanks to everyone’s help and support we achieved so much! Here are some of the highlights: • Traffic to our website increased by 84%

Gemma Douglas organised a walk across Humber Bridge that raised more than £1,000 for Ovarian Cancer Action. She was joined by over 60 people, and her story was featured on the local radio news.

Retail therapy Once again we had the support of some wonderful retailers through Ovarian Cancer Awareness Month. Oliver Bonas sold a number of products to support our charity (see page 6); and Paperchase sold a range of Mother’s Day cards to raise funds for Ovarian Cancer Action.

• 2.5 million viewers saw our items on ovarian cancer on ITV Central News, Lorraine on ITV Daybreak and This Morning programmes At the Welsh Assembly, Jurgen Dreyer and the HR team ran an awareness and fundraising campaign during March. They sold badges, displayed posters and leaflets, and had a feature on ovarian cancer in the internal newsletter. Three members of staff, all of whom have been affected by ovarian cancer in one way or another, wrote their stories which were published. There was also a Cupcake Break and fruit day. Staff baked cakes and the caterers donated fruit, and these were sold around the building to raise funds.

Geoff Fisher’s wife, Gill, sadly died of ovarian cancer last year. This year, for the awareness month, Geoff helped us to distribute more than 56,000 symptoms leaflets in the Bolton area, and arranged for 23 local pharmacy stores to put leaflets into prescription bags. He also secured media coverage about this in his local paper. And florist, Linda Glover, from Norwegian Wood Florist, gave a symptoms leaflet to everyone who visited her shop in March. She also donated 5% of her Mother’s Day takings to Ovarian Cancer Action.

• We did 63 radio interviews, which were heard by 4.2 million listeners • Nearly 16 million people read articles in national newspapers, magazines and online about Ovarian Cancer Action’s desire to let all women know about the symptoms of ovarian cancer, and the urgent need to improve disease diagnosis • Our advertisement appeared 17 times in national newspapers and magazines

WE NEED YOUR VOICE!

Even though Ovarian Cancer Awareness Month is over, our work continues all year round. The media is always keen to report on women’s direct experiences of ovarian cancer, and we are keen to hear from more women around the country to tell their story. To find out more about becoming an Ovarian Cancer Voice telephone Dr Sarah Blacklidge on 0300 456 4707. Visit our website at www.ovarian.org.uk or call us on 0300 456 4700 to find out how you could help us raise awareness of the symptoms of ovarian cancer, or funds for our vital research work.

To find out more about Ovarian Cancer Action, visit www.ovarian.org.uk

Thank you! A huge thank you to everyone who helped us during Ovarian Cancer Awareness Month – you’ve been amazing. Each year seems better than the last!

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Photograph of Allyson Kaye by Neil Mackenzie Matthews

A report from our Chair... Ovarian Cancer Action’s Chair, Allyson Kaye, reports on the significant discussions that took place in January, when the charity held the 12th Helene Harris Memorial Trust (HHMT) International Forum on Ovarian Cancer. This invitation-only meeting was attended by the world’s thought leaders in the field of ovarian cancer.

The HHMT has a 25 year long history, although the meeting, which is part of Ovarian Cancer Action’s research programme, does not take place every year. In fact it has been three years since the last meeting, and in that time science has moved forward – there are new publications, new data and a renewed energy to galvanize the ideas into a vision for the future. So this year’s HHMT was timely and enabled a sharing of expertise. The meetings bring together the world’s thought leaders in the field of ovarian cancer. Delegates are invited if they have recently published an exceptional piece of work relevant to ovarian cancer, or if they are working on something potentially significant. And there are the superstars – experts like Professor Bob Bast from MD Anderson who found the CA125 protein, and Professor Mike Birrer from Harvard, whose knowledge, wit and wisdom help to challenge and rouse the group.

Early in January I left a bleak and snowy London and thanked someone, somewhere for a minor thaw. Previous HHMT meetings have been held at the outbreak of the Iraq war, or under the threat of SARS, which resulted in many American colleagues staying at home. Of our 45 delegates at least half work in the USA, the remainder around the world. So I was reasonably upbeat as I boarded the plane to Miami for the 12th HHMT meeting that similar non-insurable events had been avoided. The aim of our 2011 meeting was to pursue a strategy for progress. We seek to bring maximum benefit to patients globally, to promote collaborations, fast track research, and to give the best start in developing smart treatments that will increase survival and improve quality of life. From the moment Professor Fran Balkwill opened the meeting you could feel the excitement, and the word on most people’s lips: change.

group of different cancers, the most common of which is high-grade serous tumour that accounts for approximately 70% of ovarian cancers. Researchers now think the majority of these tumours, previously thought to have arisen from the surface of the ovary, may in fact originate from the fallopian tube. It may be that removal of the fallopian tubes alone is sufficient to reduce the risk of ovarian cancer in certain groups. We need now to fund focused research, including new imaging techniques, to examine thoroughly this idea and its implications.

‘Researchers are making great advances in the way they can analyse genetic changes’

Personalised treatments for ovarian cancer? Researchers are making great advances in the way they are able to analyse genetic changes.

‘The meetings are a great way to promote collaborations, which could help fast track research results’

The most significant potential for change that could have major implications for survival of ovarian cancer is a challenge to the received wisdom about the origin of the disease. Ovarian cancer has long been considered by specialists as a

There are a multitude of genetic changes in ovarian cancers but, using new techniques, we can

now analyse changes happening within a patient. If we could get to the point of being able to predict these changes, clinicians would be able to prescribe drugs to fight specific sub-types of the disease – so called ‘personalised medicine’. The feeling at the meeting was that as we learn more about the genetic codes of ovarian cancer this idea will become more of a reality. For this we need increased impetus and funding to develop and fast track our research work. We felt the desire for change in Florida – what we need now is your further support, the support of the ovarian cancer community, researchers, clinicians and the pharmaceutical industry, to enable action and change. As Barack Obama, whose mother died of ovarian cancer in 1995 at the age of 53, knows all too well – change is an easy word to say and a difficult word to deliver. We need to save more lives and we cannot afford to wait. Please help us deliver change by continuing to help us fund vital research.

HELP FUND OUR RESEARCH!

The Ovarian Cancer Action Research Centre is working on a focused and co-ordinated programme of research. This is why the discoveries made in its laboratories can move more quickly to clinical trials and patient care. Donations from supporters and fundraisers are vital in helping our research continue. Please send a donation today, or arrange to make a regular monthly donation to Ovarian Cancer Action. A donation form can be found on the tear off slip at the back of this newsletter.

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Take the Gold Challenge! Everyone’s talking about the London 2012 Olympics and now you can be part of the build-up to the world’s greatest sporting event, and help Ovarian Cancer Action. So take up the challenge of a lifetime!

Kelly Edwards and TV’s Chris Hollins

Whether it’s swimming, cycling, taekwondo or archery, the Gold Challenge is your chance to participate in up to 30 Olympic and Paralympic sports, which you may not have the chance to try often. Backed by the British Olympic Association and all the major UK sporting bodies, it’s a unique and exciting fundraising initiative that aims to encourage people to get fit and healthy in the run-up to London 2012. And it’s for everyone, everywhere in the UK.

TV’s Konnie Huq and Dan Johnson, CEO

clubs and gyms at specially agreed rates. You can participate as an individual, or get a group of your friends or work colleagues together and do it as part of a team. You just choose how many sports you want to do (5, 10, 20 or 30) and start your challenge!

How it works

Ovarian Cancer Action is a charity partner for this amazing event – and we have 100 places to offer our sporting supporters.

An individual or team place costs just £25 and once you’ve chosen your sports, simply register your challenge and decide how much money you want to raise. The Gold Challenge suggests some minimum fundraising guidelines, depending on the number of sports you’ll be doing – but you can aim higher! Just remember your target should be realistic and achievable.

Open to anyone over 16 years of age* (whatever your level of ability or fitness) the Challenge can be done at your local sports, health

For your challenge you must do a minimum of three hours of coached activity in that sport – an ideal way to learn a new sport or

100 places up for grabs!

improve your existing skills – or you can complete an endurance event. As you do your challenge, you’ll score points for participating, and bonus points for doing well.

Corporate challenges The Gold Challenge is a great opportunity for companies and their employees to take on multiple Olympic and Paralympic sports and raise money for Ovarian Cancer Action. Teams can share out the sports, and with more than 30 sports to choose from everyone can take part. You can compete to see who has the best team in your organisation, or against other companies. You can also create event days around the Gold Challenge, or a series of mini-challenges, when participants can compete against each other.

The Finishing Line The Gold Challenge has to finish by the end of 2012 and as you complete your sports your coach or a sporting official will award you points and sign off the challenge. You then enter your score into the Gold Challenge Results Tracker to see how you rank in the league tables. Along the way you may qualify for competitions and prizes, so it’s worth entering your points as you go along. Nina Gopal, Ovarian Cancer Action’s Head of Fundraising says: ‘Staying active and maintaining a healthy weight are well-known, important factors in preventing cancer. The Gold Challenge is a great opportunity for our supporters to have a lot of fun and be part of the Olympic action, while raising much needed funds for our charity.’ *A Family & Youth version of the Gold Challenge is expected to be launched at the end of June.

SIGN UP NOW!

To grab one of the 100 places we have available for the Gold Challenge go to www.ovarian.org.uk/events/gold_challenge.asp or call 0300 456 4700 or email hgreenshields@ovarian.org.uk.

To find out more about Ovarian Cancer Action, visit www.ovarian.org.uk

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F E A T U R E

My story: Solvej Biddle Solvej Biddle is a highly successful business woman and came to public prominence after appearing on the BBC’s Dragon’s Den with her child’s travel brand Content&Calm. She has joined forces with Ovarian Cancer Action as a result of losing her mother tragically to the disease. This is her story. My mother was the worldrenowned archaeologist, Birthe Kjølbye-Biddle, who originally came to this country in the early 1960s to work on the excavations in Winchester. There she met and married my father (also an archaeologist) and together, throughout their careers, they excavated numerous important early Christian sites in England, Egypt and Jerusalem.

Birthe Kjølbye-Biddle

No fuss As an archaeologist my mother was always very fit and active. She also wasn’t someone to make a fuss but when, in the summer of 2007, she started to get bad heartburn, especially at night, she went to her doctor and was prescribed Zantac. By September she had chronic abdominal and lower back pain, and her GP diagnosed Irritable Bowel Syndrome, or IBS. But the symptoms continued and worsened, so after Christmas she was referred to a gastro consultant who, without a physical examination, confirmed a diagnosis of IBS and advised avoiding wheat. Sadly, if a simple CA125 blood test and ultrasound had been carried out at this point the result might have triggered further tests and an earlier diagnosis of ovarian cancer, which might have had a dramatic effect on her life expectancy.

Late night visits to A&E By late January 2008, my mother was in acute pain. After several desperate late night visits to A&E, masses were detected in her abdomen by her GP who sent her for her first ultrasound. But although this showed a problem with her ovaries she was told to return in two weeks for a more detailed ultrasound, which was unbelievable given her clearly awful condition.

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Birthe at work

Solvej Biddle with her children, launching her child’s travel brand ©

Image: Nick Morrish / British Airways

It was now that I finally realised the medical profession had let us down in the most profound way. It took just a few minutes on the internet to learn that my mother had all the classic symptoms of ovarian cancer – textbook stuff! Through the internet I found an ovarian cancer specialist and called him. He agreed to see my mother the next day and carried out a CA125 test. Two days later surgery was scheduled for the following week. Six weeks after surgery my mother started a course of chemotherapy and began to improve, even though we now knew her cancer was a stage 4C, the most advanced.

A fast relapse Just a couple of weeks after her chemotherapy finished the pain returned, and it was confirmed her CA125 was rising again. Standard treatment was no longer an option, so she was offered Gemcitabine and a parp inhibitor on trial, for 8 months.

For a while this helped, but in July 2009 a routine examination revealed spots on her liver. She was taken off the trial and underwent surgery, when they realised the condition was inoperable.

symptoms of ovarian cancer. The work Ovarian Cancer Action does to raise awareness is absolutely crucial for all of us – and we need to do anything, and everything we can to help!

Not long afterwards it was found that my mother also had brain tumours, and there followed a relentless course of treatment which, in the end, proved to be too much, too late. She died in hospital on 16 January 2010, aged 68.

Remember the symptoms!

Solvej with her mum

Tragically, my mother’s case is not that unusual because ovarian cancer can be a difficult disease to diagnose. Now I realise women can’t just rely on healthcare professionals to immediately connect all the different symptoms, because these can be vague. Instead, we have to make sure every woman knows (and remembers!) the

HELP OUR WORK

If you would like to help us raise awareness of ovarian cancer, or raise funds for Ovarian Cancer Action, please call us on 0300 456 4704, or visit our website at www.ovarian.org.uk for more information.

funding research | raising awareness | giving a voice


F E A T U R E

New NICE Guideline on diagnosing and managing ovarian cancer Ovarian Cancer Action welcomes a new clinical guideline published by the National Institute for Health and Clinical Excellence (NICE) to help healthcare professionals recognise and manage ovarian cancer.

When the Department of Health published key messages for ovarian cancer as part of its National Awareness and Early Diagnosis Initiative (NAEDI) in October 2008, it was the first time that the common symptoms of ovarian cancer had been agreed by the UK’s leading scientists, doctors and cancer charities. Now the National Institute for Health and Clinical Excellence (NICE) has published a new guideline to help healthcare professionals diagnose and manage ovarian cancer.

Improve diagnosis and management NICE acknowledges that most women with ovarian cancer have had the symptoms for months, and that there are often delays in referring them to a specialist. The aim of the new guideline is to raise awareness of the disease and its symptoms, and improve initial investigations in primary and secondary care to enable earlier referral and optimum treatment.

The importance of primary care Allyson Kaye, Ovarian Cancer Action’s Chair, has welcomed the new guideline. She says: ‘If ovarian cancer is detected when

it is still contained in the ovary, women have a 90% chance of surviving. Primary care plays such an important role in distinguishing ovarian cancer from less serious conditions, such as Irritable Bowel Syndrome. ‘We hope the new guideline will help healthcare professionals to factor ovarian cancer into a diagnosis when a woman is persistently experiencing any of the common symptoms, and to refer her for the appropriate tests urgently. Early diagnosis and treatment is currently the best way of helping women to beat this disease and improve survival rates.’

Our work continues Ovarian Cancer Action’s Healthcare Projects Manager, Dr Sarah Blacklidge, believes the guideline is an important development. She says: ‘Much of my work involves liaising with healthcare professionals and the new guideline will be a tremendous help because it spells out everything so clearly. Ovarian Cancer Action has sent each GP surgery a copy of the new guideline with NICE’s approval, and we will continue to send them our symptoms awareness leaflets.’

The new NICE guideline states • That GPs should test any woman experiencing the following symptoms on a persistent or frequent basis (particularly more than 12 days per month) to rule out ovarian cancer: - persistent abdominal distension (women often refer to this as ‘bloating’) - feeling full (early satiety) and/or loss of appetite - pelvic or abdominal pain - increased urinary urgency and/or frequency. • Any woman of 50 or over who has experienced symptoms within the last 12 months that suggest irritable bowel syndrome (IBS) should have tests to rule out ovarian cancer. This is because IBS rarely presents for the first time in women of this age. • A GP should order a CA125 blood test for any women with symptoms that suggest ovarian cancer. If the test results are abnormal – that is, if serum CA125 is 35 IU/ml or greater – an ultrasound scan of the abdomen and pelvis should be arranged. If test results are normal, the patient’s GP should assess her carefully for other clinical causes of her symptoms, and investigate if appropriate. If no other clinical cause is apparent, the patient should be advised to return to her GP if her symptoms become more frequent and/ or persistent. M O R E I N F O R M AT I O N

For more information, and a link to the NICE press release on the guideline visit our website at www.ovarian.org.uk/news/index.asp

RAISE AWARENESS IN THE WORKPLACE

If you would like us to give a presentation about ovarian cancer and its symptoms at your workplace, call Dr Sarah Blacklidge on 0300 456 4704 or email her at sblacklidge@ovarian.org.uk

To find out more about Ovarian Cancer Action, visit www.ovarian.org.uk

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F U N D R A I S I N G

A positive way to remember Ovarian Cancer Action’s Tribute Funds are a very personal way of honouring the memory of someone you love. Last year, Jane Daly and her brother Steve set up a Fund in memory of their mother, Joyce Reynolds, who died of ovarian cancer in 2002. Jane says: ‘I’ve supported Ovarian Cancer Action from when Mum first fell ill, and our Tribute Fund keeps us motivated. Most recently, Steve is planning a cycle ride for later this year, and I held a Mad Hatter’s Tea Party for friends at a local hotel. ‘I’m always thinking of Mum, especially on birthdays and anniversaries. She would have been 80 last year, and when some of her friends wanted to do something in her memory I suggested donations to our Tribute Fund because it’s such a positive way to remember her.’ In her professional life, Jane is Head of Head Office Learning & Development at Marks & Spencer and has played a significant role in helping Ovarian Cancer Action to build a relationship with one of the UK’s favourite high street retailers. SET UP A FUND!

It couldn’t be easier to set up your own Tribute Fund to honour someone you love. Visit www.lovewomen .tributefunds.com or call Hannah Greenshields on 0300 456 4704 or email hgreenshields@ovarian .org.uk to find out more.

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Our magnificent marathon runners! This year’s Virgin London Marathon saw our biggest team ever take the field. A magnificent 34 supporters ran to raise awareness of ovarian cancer and funds for Ovarian Cancer Action – and between them they expect to raise over £50,000! A total of 35,303 runners set off from Greenwich to run the 26 miles and 385 yards to The Mall, and from start to finish it was a day of achievement. One of our runners, Emma Bevis, was running her first marathon. She says: ‘This was an opportunity to do a huge thing in memory of my mum. She would have thought it completely ridiculous, but would have been so proud. I really, genuinely enjoyed it and can’t describe how fantastic it felt to cross the finishing line!’

Emma Bevis

Helene Tsouloupas

Lucy Aitkin

Tracey Holland

Our congratulations and a huge thank you to our runners! Lucy Aitkin, Debbie Alderson, Karen Arnold, Martin Arnold, Emma Aziz, James Barton, Emma Bevis, Tracey Birtwistle, Eleanor Brown, Mandy Byrne, Gemma Carter, Samantha Clark, Neil Dobson, Alison Eagleton, Judith Ellis, David Hart, Tracey Holland, Alison Holmes, Malcolm Ives, Suzanne Lienert, Nicole Mackintosh, Anne McClellan, Katherine Mockford, Mathew Nagel, Hayley Nowak, Jonathan Nuth, Claire O’Farrell, Emma Prideaux, Kate Rowan, Carolyn Stapley, Maureen Steed, Darren Stephenson, Lorraine Stevens, and Helene Tsouloupas.

Give as you LiveTM – the generous shopping app! Give as you Live™ is a new shopping app that will send a donation to Ovarian Cancer Action for each online purchase you make.

ensures an average donation of 2.5% of the purchase price is sent direct to Ovarian Cancer Action. With no price mark up to you!

You can shop online at all your favourite sites – including Amazon, Google, eBay, Tesco, and John Lewis – and the app

Supporter, Suki Gallagher, tried the app and says: ‘When my bread bin collapsed I didn’t have time to go shopping for a

replacement. But with the Give as you LiveTM app I knew if I found one online I’d be raising money for Ovarian Cancer Action at the same time. In the last few weeks alone I’ve raised almost £40 for Ovarian Cancer Action, on items I was going to buy anyway!’

M O R E I N F O R M AT I O N

To download the Give as you LiveTM app, so you can start donating every time you shop, please visit www.ovarian.org.uk/supportus/donate/giveasyoulive.asp

funding research | raising awareness | giving a voice


F U N D R A I S I N G

Get shopping!

Go green for ovarian cancer

We are delighted to announce two new shopping partnerships, that allow you to support Ovarian Cancer Action to receive a donation on every order you place.

We are all keen to protect the environment and reduce waste, so we’ve joined forces with some recycling experts to launch an exciting new fundraising initiative to raise money for Ovarian Cancer Action.

Say it with flowers

If you order flowers online from www.charityflowers.co.uk you can choose Ovarian Cancer Action as the charity to benefit from a donation of 15% of the retail price of your order. There is a fabulous selection of bouquets, plants and gifts on offer – something for every occasion and every price. So visit the website and then add it to your bookmarks.

Amazing savings Ovarian Cancer Action is now a listed charity on Top Cashback – the UK’s most generous cash back website. At www.TopCashback.co.uk you can shop with nearly 3,000 retailers, and make some amazing savings – on everything from books and magazines, to broadband and holidays. And while you save money on your online shopping you will also be earning money for the charity.

We’ll provide you with Freepost envelopes to send your items for recycling, or arrange for their collection. So go green and support our work at the same time.

When you sign up to join, you simply select Ovarian Cancer Action as your chosen charity and then shop online as you normally would. The website offers 100% of your cash back to the charity of your choice, and does not charge for the privilege. In fact, it is 100% free, with no fees and no catches!

Check out the amazing savings at www.TopCashback.co.uk and sign up to join – but don’t forget to select Ovarian Cancer Action as your chosen charity.

If you use a printer or fax machine, we can recycle inkjet and toner cartridges to raise funds for the charity. You could also earn around £5 for every used mobile phone donated on our behalf.

CDs, DVDs and computer games All your unwanted CDs, DVDs and computer games could turn into much needed funds for Ovarian Cancer Action. You can send them to us by Freepost, or we can offer you a free, fully insured door-todoor courier service if you donate over 100 items.

Jewellery recycling From costume jewellery to gold, silver and watches – all the unwanted or unworn items in your jewellery box could turn into a donation to Ovarian Cancer Action. Even damaged, broken and incomplete items will help; so odd earrings and snapped chains would be a great start.

CLICK AND GO

For a special gift, visit www.charityflowers.co.uk or call 0870 530 0600 – and don’t forget to select or quote Ovarian Cancer Action when placing your order.

Printer cartridges and mobile phones

S I G N U P T O D AY

For a supply of Freepost envelopes, or to arrange recycling collections, call Hayley Richardson on 0300 456 4704 or email hrichardson@ovarian.org.uk.

A huge thank you to everyone who has raised funds for Ovarian Cancer Action during the past few months – your generosity and support is truly appreciated. Trusts: The C Charitable Trust, Frognal Trust, Isle of Man Anti Cancer Association, The Leathersellers’ Company, The Madeline Mabey Trust, The Mason le Page Charitable Trust, The Merrick and Heath Fund, The Roger Raymond Charitable Trust No 2, Rosetrees Trust, The Sandra Charitable Trust, The Sovereign Health Care Trust, Sir Donald and Lady Edna Wilson Charitable Trust, The Marjorie & Arnold Ziff Charitable Foundation. Fundraisers:Jeff Allen and Harry Whelan, Cathy Baxter, Jayne Bradshaw, Grant Crayden and family, Josey and Fynn Cullen, Aidan Duggan, Simon Ednie, Lyndsey Fox, Jan Harris, Dave and Dee Hurrell, Valerie Jerwood, Gill Johal, Karen and Andy Lyle from Southey Lodge of Freemasons, Susan Marks, Karen Monteith, Chris Noden, Cllr Asad Omar, John Randall, Cathy Underwood Radan, Kathleen Wilson and Victoria Muir and 1st Waterside and 12th Kirkintilloch Brownies, Amanda Weller and Lisa Wolford.

To find out more about Ovarian Cancer Action, visit www.ovarian.org.uk

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Ovarian cancer action newsletter 2011