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NEWSLETTER SUMMER 2010

Ovarian Cancer Awareness Month exceeding all our expectations – thanks to you!

Supporting ovarian cancer survivors improving quality of life

The Cupcake Break help us beat ovarian cancer

Keeping ovarian cancer on the political agenda our public affairs work continues

My story: Gurbachan Johal 'Sharing my experience of ovarian cancer has given me a new purpose'

www.ova rian.org .uk funding research | raising awareness | giving a voice


Contents N E W S

Welcome! Welcome to Ovarian Cancer Action’s summer newsletter, bringing you all the latest news from the charity. March was Ovarian Cancer Awareness Month and we are immensely grateful to all our supporters and fundraisers who worked so hard to make it another huge success. Once again you played a crucial role in helping raise the profile of ovarian cancer in the national and regional media, and helped to distribute our new symptoms awareness leaflets and posters across the UK. During the month, we launched the first online symptoms awareness campaign, Every Woman Should Remember, which was very well received. You can find out more about the campaign and what we achieved during Ovarian Cancer Awareness Month on page 10. We also launched The Cupcake Break, our new fundraising campaign. It’s not too late to take part – cupcakes are delicious at any time of the year! See the article on page 7 to find out more. Our amazing supporters continue to work hard all year round. In April the charity fielded its largest ever London Marathon team of 23 runners, who have already raised an amazing £43,000! In this issue you can read about Gurbachan Johal, who does so much to raise funds and awareness, and a sponsored tattoo event which was held in memory of Rebecca Brown and raised more than £4,000. There are many more inspirational stories like these and we are grateful to you all. Your dedication and commitment makes all the difference! In this issue we are pleased to announce new funding of just over £750,000 for the Ovarian Cancer Action Research Centre. Every single penny of this was donated by our supporters, so thank you once again for everything that you do.

Peter Reynolds Chief Executive

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Online campaign of the week

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Our research funding grows!

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Radio 4 Charity Appeal

– our new campaign wins industry award

– the Board approves new funding

– our appeal raises more than £8,000 F E A T U R E S

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New symptoms awareness leaflets

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Supporting ovarian cancer survivors

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The Cupcake Break

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Allyson Kaye, our Chair

– Ovarian Cancer Voices lend support

– read about our new project

– help us beat ovarian cancer

– a personal story

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Ovarian Cancer Awareness Month

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My story: Gurbachan Johal

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Keeping ovarian cancer on the agenda

– supporters pulled out all the stops!

– read about Gurbachan’s experience

– our public affairs work continues F U N D R A I S I N G

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Marathons and more!

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Fantastic fundraisers

– find out how our runners fared

– read about our amazing supporters Contact us Ovarian Cancer Action Harvard House, The Waterfront, Elstree Road Elstree, Hertfordshire, WD6 3BS Tel: Fax: Email: Visit:

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

HELP US SPREAD THE WORD!

Registered charity no. 1109743

One of the aims of Ovarian Cancer Action is to raise awareness of the disease. We believe that by being more aware of frequent and persistent symptoms, women who have ovarian cancer will receive treatment sooner.

Trustees Allyson Kaye (Chair) Daniel Harris John Harris CBE Martin Paisner CBE Emma Scott Lord Turnberg of Cheadle

By giving copies of this newsletter to your friends, your local library or doctor’s surgery you could let more people know about the work we do to fund research, raise awareness, and give a voice to women with ovarian cancer. Call us today on 0300 456 4700 or return the tear off slip if you’d like us to send you some extra copies of the newsletter to distribute.

funding research | raising awareness | giving a voice

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 Head of Communications and Public Affairs: Sam Gibson Production Editor: Charlotte Williams Design: www.joannewood.co.uk Photography: Dan Tsantilis


N E W S

Ovarian Cancer Action receives donation from the Summits Appeal

Online campaign chosen as Digital Campaign of the Week Two weeks after Ovarian Cancer Action launched the UK’s first online symptoms awareness campaign it was chosen as the Digital Campaign of the Week by the charity publication, Third Sector. Our campaign (www.everywomanshouldremember.org.uk) was launched in the run-up to Ovarian Cancer Awareness Month and features a short film which asks viewers to pledge to remember the symptoms of ovarian cancer, and to send the message to friends and family. Already, more than 1,800 people have pledged to remember the symptoms of ovarian cancer and tell others about them.

John Ashley with his trusty Scottie

FIND OUT MORE!

Ovarian Cancer Action has been chosen to benefit from funds raised by the Summits Appeal for Ovarian Cancer Trials – an ambitious fundraising initiative launched by John Ashley, whose wife, Jo, was diagnosed with ovarian cancer in 1997. Originally, John set out to raise funds in support of clinical trials for ovarian cancer within provincial hospitals of the NHS through the Summits Appeal. He was inspired by the work of Dr Alan Lamont and Professor Ian Cree, who are now based at Colchester and Portsmouth Hospitals. (When she underwent treatment for ovarian cancer, Jo joined Dr Lamont’s clinical trial at Southend Hospital.) Despite Jo’s death in February 2001, John remains committed to

his original aim to reach the highest point of 97 counties in the UK. He has already visited 72 counties, walking over 800 miles and climbing over 120,000 ft. On many of his sponsored hikes John has been accompanied by his trusty Scottie, Thorn. But at 14 years old Thorn has retired, and John is now accompanied by his Scottie called Ramsey. Recently it was decided to close down the Summits Appeal, and John suggested donating the charity’s funds to Ovarian Cancer Action because of our shared commitment to research, and our involvement with clinical trials through the Ovarian Cancer Action Research Centre. We are very grateful for the Appeal’s generous donation of £11,280.59.

We’re now on...

Facebook is a great way to keep up to date with what we are doing and help us spread the word about our work. Our page is updated regularly, so you will see the latest news about what is happening and how you could get involved. Join us by visiting www.facebook.com/ ovariancanceraction

Twitter is without a doubt the best way to share and discover what is happening right now. For up-to-the-minute news from Ovarian Cancer Action, simply visit: www.twitter.com and sign-up, or you can find us @OvarianCancerUK. Why not join in the fun and give it a try?

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

Turn to the article on page 8 to find out more about the online campaign and our work during Ovarian Cancer Awareness Month.

Funding for the Ovarian Cancer Action Research Centre grows In April the Directors of Ovarian Cancer Action were delighted to be able to award new funding to the Ovarian Cancer Action Research Centre worth £753,000, following a site visit and a review carried out by the charity’s Medical Science Review Committee. Funding has been provided to allow the continuation of all current projects, and four new research posts that will enable the Research Centre to expand its work seeking new ways of detecting and treating the disease. Peter Reynolds comments: ‘Our brilliant supporters have really pulled out the stops this year to raise more funds than ever before for the charity. As a direct result we have been able to increase our support for the Research Centre.

‘Our heartfelt thanks go to everyone who has worked so hard to make this possible. We need to increase our support for the Research Centre further, so the commitment and energy of our fundraisers and donors is more important than ever.’

PLEASE KEEP RAISING FUNDS!

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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N E W S

Lady Jakobovits It was with great sadness that we learned of the death of Lady Amelie Jacobovits – or ‘Lady J’ as she liked to be known – on 7 May 2010. Lady J was much more than the wife of the former Chief Rabbi – she became known as AngloJewry's Queen Mother. She was an inspiration to so many individuals and charitable organisations and regarded her role as a Patron of Ovarian Cancer Action as being much more than a figurehead. In the early days she spoke at our meetings as a Patient Advocate. Every newsletter was followed by a supportive letter and a kind word, and more often than not a donation was included.

All Aboard Ovarian Cancer Action is delighted to have been chosen as one of the annual beneficiaries from All Aboard charity shops, which distribute funds to charitable organisations that support the Jewish community. A female member of the Ashkenazi Jewish population is around 10 times more likely to carry one of the faulty BRCA genes. This means there is a considerably higher presence of hereditary ovarian and breast cancer in the Jewish community than in the wider population. The increased risk of developing ovarian cancer amongst the Jewish community was central to All Aboard deciding to support Ovarian Cancer Action. M O R E I N F O R M AT I O N !

To order a copy of our high risk or Ashkenazi Inheritance leaflet, please email info@ovarian.org.uk or call 0300 456 4700. To find your nearest All Aboard shop visit www.allaboardshops.com

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An appeal from the heart

Allyson Kaye, Ovarian Cancer Action's Chair said: ‘Lady J was a tremendous friend of so many people, Jewish and non-Jewish, in so many walks of life. I’m proud she was my friend and a mentor to our charity. I will miss her humorous storytelling, as well as her perceptiveness and insight.’ She is survived by six children and more than 100 grandchildren and great-grandchildren. She always said it was unlucky to count them! Nigel Havers with our Chair, Allyson Kaye

Lady J with her family, 1981

Medicine & Me: Ovarian cancer Thank you to everyone who attended the ‘Medicine & Me’ meeting on ovarian cancer at the Royal Society of Medicine in February. The meeting was very well received and produced a lively and interesting debate about current methods for diagnosing, treating and supporting women with ovarian cancer. Ovarian Cancer Action and the Royal Society of Medicine are now considering holding similar meetings across the UK. HELP US ORGANISE AN EVENT IN YOUR AREA

Please get in touch if you would be interested in helping us raise awareness in your area. Call Dr Sarah Blacklidge on 0300 456 4707 or email sblacklidge@ ovarian.org.uk

In April our patron, Nigel Havers, presented Ovarian Cancer Action’s Radio 4 Appeal. In the Appeal, Nigel introduced listeners to Loretta Oliver, one of our valued supporters with an experience of ovarian cancer; and he spoke movingly about his own experience of losing his wife, Polly, to ovarian cancer. He explained the need to raise awareness of the disease and its symptoms to ensure

more women are diagnosed earlier, when the disease is easier to treat; and he talked about the groundbreaking work being done at Ovarian Cancer Action’s Research Centre. So far the Appeal has raised more than £8,000 for Ovarian Cancer Action through online and telephone donations. Our heartfelt thanks to everyone who made a donation.

L I S T E N A G A I N O R M A K E A D O N AT I O N

You can still listen to the Appeal on BBC iPlayer. Visit the Radio 4 Appeal website at www.bbc.co.uk/programmes/b006qnc7 If you would like to make a donation to Ovarian Cancer Action please call us on 0300 456 4700 or use the donation form on the tear off slip at the back of this newsletter.

We’re on the move! Ovarian Cancer Action is growing, and we will soon be moving to new offices. As soon as the details have been finalised we will notify you of our new address. But in the meantime please make a note of the new telephone and fax numbers below. These numbers are already in use and will move with us. Our new numbers: Telephone Fax

0300 456 4700 0300 456 4708

Please note these are NOT premium rate numbers and calls to them will never be charged at more than the standard rate.

funding research | raising awareness | giving a voice


F E A T U R E

Voices help to raise awareness of symptoms Ovarian Cancer Action’s new symptoms awareness materials have been well-received. Raising awareness of the symptoms of ovarian cancer is a critical part of the work of Ovarian Cancer Action, and earlier this year we produced a new symptoms awareness leaflet and poster to help us. We aimed to produce informative, accessible and attractive materials for patients visiting GP surgeries during and after Ovarian Cancer Awareness Month in March. Each year we send a supply of symptoms awareness leaflets and posters to every GP surgery in the UK. The project was managed by Dr. Sarah Blacklidge, Ovarian Cancer Action’s Healthcare Projects Manager.

Standing out from the crowd As Sarah explains, ‘We wanted our new symptoms awareness materials to be eye-catching and to stand out from the crowd. This is particularly important if they are going to be displayed with other information leaflets in a healthcare setting. ‘We’d had very constructive feedback from GPs, healthcare professionals and patients on our previous symptoms awareness leaflet, so we had a good idea of what we wanted to do with the new materials. And we were really

delighted when four of our Ovarian Cancer Voices agreed to be photographed for the poster and leaflet because their participation really brought everything to life.’

Giving a voice to women affected by ovarian cancer Gurbachan Johal, Sue Slater, Angela Walker and Kate Willis all feel passionately about raising awareness of the symptoms of ovarian cancer. As Ovarian Cancer Voices they are already helping us by speaking about the disease, and all of them believe the leaflet and poster are powerful and essential tools. ‘I was pleased to be asked to help with the new awareness materials,’ says Angela Walker. ‘Complete strangers have come up to me in the gym to talk about the leaflet and I’ve had the opportunity to ask them if they’ve read the symptoms. Most have said yes, and say it’s very easy to read with punchy points.’

Positive feedback The new leaflet and poster are endorsed by the Royal College of General Practitioners and the Royal College of Nursing, and since their appearance we have received lots of positive feedback. ‘What a nice, easy to read, friendly leaflet, with all the facts. Thank you for taking the time to produce this.’ ‘The clear symptoms were good to be aware of, and I liked the refreshing approach to communicating a very difficult subject.’

Gurbachan Johal and Angela Walker

‘Having read other leaflets on this condition, I’ve found yours

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

Sue Slater – one of our Ovarian Cancer Voices

to be the clearest. I’ve been referred for an ultrasound and I’ve found your help line and website really helpful too.’

Hand-in-hand The new materials are designed to work hand-in-hand with our other awareness raising work, including our online campaign: www.everywomanshould remember.org.uk In recent months, Dr. Sarah Blacklidge has also been out on the road, raising awareness of ovarian cancer at conferences and exhibitions. These events are also a good way to raise the profile of our charity and the work we do, and a useful means of meeting new supporters.

See and hear ‘We know that awareness of the symptoms of ovarian cancer remains low, so women and healthcare professionals need to see and hear information about the disease,’ says Sarah.

‘Our message about the symptoms is much more powerful if it isn’t seen in isolation, so we’re tackling the problem of low awareness from several different directions – the new leaflet and poster, conferences and exhibitions, the online campaign, and our Ovarian Cancer Voices. ‘We must be pro-active in getting the message across in different ways, and in all sorts of different places, so we can improve women’s chances of surviving ovarian cancer.’

HOW YOU CAN HELP

Could you distribute our symptoms awareness poster and leaflets in your local area? You can download them from our website at www.ovarian.org.uk or call us on 0300 456 4700 and we will send you copies.

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F E A T U R E

Supporting ovarian cancer survivors Ovarian Cancer Action is working with clinicians at the Hammersmith Hospital on a new project that seeks to understand how to improve support for women who have been through a diagnosis of ovarian cancer. Dr. Sarah Blagden, consultant medical oncologist at Imperial Hammersmith Hospital explains. What happens when women finish treatment for ovarian cancer? When the chemotherapy drip is taken down for the last time, the relief of completing treatment is often superseded by overwhelming feelings of fear. Many women describe the struggle to return to a normal life after treatment as being worse than having chemotherapy. They often feel abandoned by their healthcare professionals, left alone to cope with the horrible uncertainty of the future.

Survivorship support Compared to other cancers, like breast cancer, there is amazingly little ovarian cancer survivorship support for women in the UK; and now that women are living longer than ever before, either following or with ovarian cancer, it is a problem that should no longer be ignored. There is also surprisingly little research into what women experience once they have finished treatment, both physically and psychologically. So how can healthcare professionals provide aftercare if they do not know what help their patients really need?

What do women feel? To address this, we asked women who had been treated for ovarian

A personal view

Lindy Waldron: During my treatment for ovarian cancer all my energy was focused on survival. I didn’t and couldn’t plan for the future, so when my treatment ended it felt like a bewildering anti-climax. My final discharge was a routine affair. No celebrations. And no medal – although I felt I

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cancer to complete a detailed questionnaire to find out exactly how they were feeling in the years following treatment. The results showed that the majority faced an emotional struggle in order to try and get back to normality – “I felt the world was passing me by at greater speed”. Some patients described persistent neuropathy and joint pains, others were dogged by symptoms of menopause like hot flushes, and very few seemed to have a normal sex life. It is likely that many of these problems will get better by themselves, but others can certainly be improved or solved with appropriate support and information.

Don’t suffer in silence There are lots of aspects to providing ‘survivorship support’ to cancer patients, but at the very least women need more information about the support services available within their hospital or community, and someone at the end of the phone who can provide help. With the right support we hope to pilot a walk-in ovarian cancer survivorship clinic at Hammersmith Hospital as part of our work with Ovarian Cancer

deserved one. I was given a leaflet listing symptoms to look out for in the future, and I immediately felt apprehensive. When I’d been at my lowest ebb I’d been offered the chance to participate in a clinical trial. But the last thing I wanted then was more treatment, blood tests and hospital visits. Now I wonder if constant monitoring would be helpful. Would it put my mind at rest, or is it better to move on and try to forget?

Dr. Sarah Blagden

Action, so our patients have an immediate means of getting help or support when they most need it. Ovarian cancer used to be described as a ‘silent’ disease. We now know that many ovarian cancer survivors suffer in silence too. It is time that we all worked together to help ovarian cancer patients live better!

HOW YOU CAN HELP

Join Ovarian Cancer Voices and help us make sure the voices of people affected by ovarian cancer are heard. Call us on 0300 456 4707 or visit www.ovarian.org.uk

While I was having my six monthly check-ups I felt reasonably confident – I was still a legitimate patient with good reason to visit my GP with any worries.

Truthfully, I need recognition that – for me – it isn’t all over and forgotten. I’m still not sure how I should be feeling. Relieved, thankful, apprehensive?

Now I’ve been discharged I feel less justified. But I’d like to feel I’m not paranoid and that it’s perfectly normal to worry about my cancer returning. And I still have unanswered questions about why and how the odds changed in my favour.

Towards the end of treatment I think some preparation for the future would be beneficial. After all, we plan for retirement, and our armed forces have help for their return to civilian life – so couldn’t there be something similar for cancer patients?

funding research | raising awareness | giving a voice


F E A T U R E

Have your cake and help beat ovarian cancer! The Cupcake Break is Ovarian Cancer Action’s new fundraising initiative, and it couldn’t be simpler to get involved! Why cupcakes? The Cupcake Break is our version of the traditional coffee morning. It is a chance to indulge yourself and your friends and family – eating cake to raise money! ‘We wanted a campaign that would capture everyone’s imagination and open new doors,’ says Laurie Boult, Ovarian Cancer Action’s Head of Fundraising. ‘Cupcakes are a fashionable, edible treat; and The Cupcake Break is easy to organise, fun to do, and something for the whole family.’

Get baking! Supporters of Ovarian Cancer Action have thrown themselves behind The Cupcake Break and are putting on their oven gloves to get baking! So far they have raised nearly £10,000 for Ovarian Cancer Action, and money is still coming in.

Clare Picone says: ‘I raised more than £350 and had such a lot of fun. Afterwards I had a nice salad… for the first time ever I couldn’t eat more cake!’ Thank you to everyone who joined in The Cupcake Break during Ovarian Cancer Awareness Month. See page 15 for details.

Expert help You do not need to be a domestic goddess to hold a Cupcake Break. In Ovarian Cancer Awareness Month we joined forces with partner bakeries

around the country so supporters could find supplies of pictureperfect cupcakes without lifting a finger! Emma Hogarth who runs Simply Gorgeous Cupcakes (www.simplygorgeouscup cakes.com) in Lancashire donated 20% of all sales throughout March and April. She also hosted her own Cupcake Break raising £420. ‘I was delighted to partner with Ovarian Cancer Action,’ says Emma. ‘The Cupcake Break is the perfect way for my company to help a really worthwhile cause and it inspired my customers too.’

The Cupcake Break on TV! The Cupcake Break is opening new doors for us, including national television. Presenters of Create & Craft TV, an Ideal World home shopping channel, took part in The Cupcake Break live on air and raised awareness of the symptoms of ovarian cancer to its predominantly female audience. They also sold an exclusive cupcake craft set, donating 20% of all sales. So far this has raised over £5,000 and we hope to have more shows later in the year. (To buy the craft set visit www.createandcraft.tv and search for ‘ovarian cancer’.)

All year round Although Ovarian Cancer Awareness Month was the focus for The Cupcake Break, there is no reason why you cannot host a Cupcake Break at any time of year. You could hold a Cupcake Break garden party in the summer, or plan a Halloween Cupcake Break in October. In fact birthdays, anniversaries and Christmas festivities could all be boosted by a Cupcake Break!

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

Two of our partner bakeries have made a commitment to help us throughout the year. Barbara Betts, whose company Cupsadaisy is based in the Cotswolds (www.cupsadaisy.com) has a personal reason for supporting Ovarian Cancer Action. She says: ‘Ovarian cancer has touched my life in the saddest of ways. With two relatives having been diagnosed – one survived, one not so lucky – I’m very aware of the dangers of late diagnosis. Anything I can do to help raise awareness would be wonderful.’ Barbara has chosen Ovarian Cancer Action as her company’s charity of the year and will donate 10p from each cupcake she sells, as well as organising fundraising events and encouraging her customers to raise funds too. Denise Allen of Cupcake and Cookie Central (www.cupcake andcookiecentral.co.uk) has designed a special cupcake for Ovarian Cancer Action, and will donate 25p from each cake sold. The cake will feature in Denise’s Cupcake and Cookie Show at food festivals, farmers markets and other seasonal events in Hampshire, Berkshire and Surrey.

FIND OUT MORE

Bigger and better!

The Cupcake Break website at www.thecup cakebreak.org.uk is a great source of ideas, as well as a place to share your Cupcake Break stories, photographs, recipes and news. You can also download posters and invitations from the website to use for your Cupcake Break.

The Cupcake Break was a great success during Ovarian Cancer Awareness Month – and will get even bigger and better over the coming months! So why not join in the fun and indulge your cakecravings by holding your own Cupcake Break?

Or call Hannah Greenshields on 0300 456 4704, or email her at hgreenshields@ ovarian.org.uk for more information about how to get involved.

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F E A T U R E

My wonderful mum died – now I campaign to save other women

For the past 25 years, Mother’s Day has been a particularly poignant time for Allyson Kaye, 48. Here, she explains how the tragically early death of her mother inspired her to campaign to save other women.

Allyson Kaye with her daughter, Charlotte

Allyson says:

‘One of my most vivid memories is of hiding under my desk at work, sobbing. Aged 22, I was facing the fact that my mother was dying from cancer. It’s something I’d never wish on anyone else. I hate the thought of other women feeling the same pain I did. I have so many memories of my mother, Helene. When I was young, she taught me to knit, cook and garden, and I was proud of how attractive and full of fun she was. Always busy too – either looking after me and my older brother Daniel, socialising with friends, playing tennis, or travelling with my father, John, who’s now 77. Helene had strong views on everything and was a very

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determined woman! She wouldn’t let my first love in the house, but adored my next boyfriend, Nicholas, who I met when I was 20 and still at university. He was 27 and an accountant and we fell madly in love and married within a year of meeting.

we weren’t to tell her. Instead we had to keep positive because that would help her fight it. I was devastated, although of course I did my best to put on a brave face for my mother.

My first years of marriage became blighted by my mother’s ill health. Her symptoms started with persistent indigestion and her tummy was permanently bloated – which is now accepted as a sign of ovarian cancer. But she wasn’t diagnosed for months.

‘Her symptoms started with persistent indigestion and her tummy was permanently bloated – which is now accepted as a sign of ovarian cancer. But she wasn’t diagnosed for months.’

I didn’t know how ill my mother was until she went into hospital for a hysterectomy in March 1984, aged just 46. As she went to the operating theatre my father burst into tears, telling me my mother had cancer but didn’t know it and

In fact she discovered she had cancer before she left hospital – one of the nurses let it slip. She was angry she hadn’t been told, especially as she’d felt there was something badly wrong. But other

than that she made very few allowances for being ill and followed our lead, agreeing that a positive mental attitude was important and being terribly bracing about everything. With hindsight, I’m not sure that’s the best solution. Patients can feel under tremendous pressure to try to match friends and family’s upbeat mood. Six weeks after her hysterectomy, my mother started chemotherapy. She became very thin and drawn, but had a treatment that meant she wouldn’t lose her hair. Looking back, I wonder if her oncologist knew she wouldn’t make it and, knowing that losing her hair would really trouble her, chose to give her a good quality of life. She was incredibly brave throughout. I don’t know whether she cried or felt self-

funding research | raising awareness | giving a voice


This is an abridged version of a feature written by Mel Fallowfield that first appeared in the March 2010 issue of Prima magazine. Photography of Allyson Kaye by Neil Mackenzie Matthews

pity, but I certainly never saw any evidence of that. Within a year she was in remission and threw herself back into her old social whirl. Sadly, within a few months it became clear that once again she wasn’t well. I still couldn’t accept she might actually be dying, and was in denial until the end. A few weeks before she died, in August 1985, my mother was in hospital and her oncologist told me I had time to go on a holiday that had been booked a long time. But while I was away my father called me home; my mother was dying. By the time I got there she’d been unconscious for 48 hours but she rallied, opened her eyes and sat up saying: “Hello Ally, how are you? Did you have a nice holiday?” It only lasted for about 30 seconds before she lapsed back into unconsciousness. It was incredible she managed to do that. For the next five days I stayed in that hospital room with my father and my brother, Daniel, and we were all there as she passed away. Afterwards was hellish. I handled the pain by starting my own family, giving birth to Eloise just a year after my mother had died, and Charlotte two years after that. My father struggled to cope but channelled his grief into setting up The Helene Harris Memorial Trust, dedicated to research into ovarian cancer. It typified the man he is. He wanted to do something positive and optimistic; he knew he couldn’t change the past but wanted to change the future.

Our charity aims to ensure more women survive ovarian cancer. One of the best ways to do this is to make sure it’s detected as early as possible.

‘It’s a complete fallacy that ovarian cancer is a ‘silent killer’. It has some very clear symptoms and I’m desperate for every woman to know these, and pass them on to all their friends and relations.’

It’s a complete fallacy that ovarian cancer is a ‘silent killer’. It has some very clear symptoms and I’m desperate for every woman to know these, and pass them on to all their friends and relations. If ovarian cancer is discovered in the early stages, up to 90 per cent of women will survive for more than five years. Unfortunately, most women in the UK are not diagnosed until the cancer has spread, making successful treatment difficult, and survival rates much lower. I like to think my daughters’ generation are more clued up and the message is getting through. I turned 48 recently – the age my mother was when she died – and I’m still on my mission. After all, the ovary releases the egg of life – it certainly shouldn’t be the death of any woman.’ Allyson Kaye

Ovarian cancer: the symptoms If you have any of the following symptoms it’s unlikely they are caused by a serious problem, but it’s important you discuss them with your doctor and ask if they have considered ovarian cancer. In particular, you should ask your GP whether ovarian cancer should be considered if you experience any of these symptoms on most days:

In 1995, at my father’s suggestion, I took over running the trust. I couldn’t have contemplated it any earlier – I was busy with the girls and the pain of my mother’s death was still too raw. But now I wanted to be involved in something that mattered so much to my family. Five years later, I started Ovarian Cancer Action – a charity that incorporated the trust. At the beginning it was just me and a part-time PA. I worked seven days a week desperately trying to raise the charity’s profile and funds to open a research centre. Now we employ seven people at the headquarters and 44 scientists in the centre – which is fabulous.

• Persistent pelvic and stomach pain. • Increased abdominal size / persistent bloating (not bloating that comes and goes). • Difficulty eating and feeling full quickly. Occasionally other symptoms such as urinary symptoms, changes in bowel habit, extreme fatigue or back pain may also be experienced on their own, or at the same time as those listed above. For more information call Ovarian Cancer Action on 0300 456 4704 or visit www.ovarian.org.uk

JOIN OUR FIGHT!

If you are the partner, sibling or child of someone with ovarian cancer I would urge you to join our fight. We’re lucky enough to be well and have the energy to change the future for women with ovarian cancer. There’s still so much that needs to be done and it’s easier to do it together. Email voices@ovarian.org.uk to offer your support or call Ovarian Cancer Action on 0300 456 4704

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

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F E A T U R E

Ovarian Cancer Awareness Month 2010 – better than ever before! Once again, thanks to the help of our supporters, Ovarian Cancer Action enjoyed its most successful ever awareness month in March. Ovarian Cancer Awareness Month is vitally important to the work of our charity. It offers so many opportunities to promote our work, talk about the symptoms of ovarian cancer, the disease itself and the work we do. But without your support we could not make nearly as much impact – and this year you have exceeded all expectations!

Reaching more women The new awareness materials we produced (see page 5) have proved fantastically successful! In the run up to Ovarian Cancer Awareness Month we experienced a 100% increase in the amount of awareness literature being requested and had to organise another print run to keep up with demand.

The new leaflet provides the latest guidance on the symptoms of ovarian cancer, and to ensure women and healthcare professionals have the most upto-date information we sent a supply of leaflets and posters to every GP surgery in the UK, as well as a set of key messages for healthcare professionals. In addition, of course, many of our supporters offered to distribute the materials during March and they were displayed around the UK in offices, libraries, community centres, hospitals, clinics and schools. We know that organising displays and distributing information at different venues is a very effective way of raising awareness of ovarian cancer, so thank you to everyone who helped us in this way.

New digital campaign In a really exciting development, Ovarian Cancer Action launched the UK’s first online symptoms awareness campaign in time for Ovarian Cancer Awareness Month. Two weeks after the launch we had secured more than 1,000 pledges from visitors to our website and our campaign was chosen as the digital campaign of the week by Third Sector, the UK’s leading charity publication. The online campaign comprises a short film that features our Chair, Allyson Kaye, and four of our Ovarian Cancer Voices – Danielle Kelman, Gurbachan Johal, Angela Walker and Rocky Scott. The film sends a powerful and memorable message because our Voices explain the symptoms of ovarian cancer in their own words. Viewers are asked to pledge to remember the symptoms and to spread the word by sending the message to friends and family. You can still view the campaign film and pledge to remember the symptoms of ovarian cancer – and share the message with others.

Pledge to remember the symptoms of ovarian cancer! Visit our website at www.ovarian.org.uk and click on the link on the home page, or visit the campaign website at www.everywoman shouldremember.org.uk to pledge to remember.

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Visiting Downing Street March also included a visit to 10 Downing Street for some of our supporters, our Chief Executive, Peter Reynolds, and our Chair, Allyson Kaye. A reception was held to celebrate Britain’s progress towards beating cancer in this generation and was hosted by the Prime Minister’s wife, Sarah Brown, and the Secretary of State for Health, The Rt. Hon. Andy Burnham.

Reception at No. 10

Supporter Andrea Murray and her husband, Howard, attended the event at Downing Street. She commented: ‘I’m truly one of the fortunate ones. I’ve been a survivor for five years and I’ve met such inspirational people during that time – people who I would have never met if I hadn’t been ill. ‘It has, ironically, been only a positive experience as I have been to Parliament, Portcullis House, and 10 Downing Street... not to mention being involved with wonderful fundraising events! My admiration for Allyson for building on her father’s work and for all of you at Ovarian Cancer Action is immense.’

funding research | raising awareness | giving a voice


F E A T U R E

Fundraising fever! Supporters of Ovarian Cancer Action are always enthusiastic about helping us during Ovarian Cancer Awareness Month. Many of you channel this enthusiasm into raising funds for our charity at the same time as helping us to raise awareness – and this year was no exception!

The Cupcake Break The Cupcake Break caught everyone’s imagination and cupcake parties were held up and down the country, with hundreds of our supporters eating cake to help us beat ovarian cancer!

But your efforts did not stop there! There was no limit to your inventiveness and commitment – you ran races, did sponsored walks, held pamper parties, race nights and discos to raise awareness and funds for Ovarian Cancer Action.

being diagnosed too late or even being diagnosed wrongly. I know my mum would be really proud of me for doing something positive in her memory. I completed the race for her and all the other women I can potentially help.’

Adidas Half Marathon On Mothering Sunday 16 supporters ran the Silverstone Adidas Half Marathon and between them raised more than £9,000 for Ovarian Cancer Action. It was a tough race with some very open, windy stretches but all our runners completed the distance in very respectable times.

Alessandro Fiorito and family

Another runner was Alessandro Fiorito who, supported by his wife, Daniela and their twins Marco and Alice, as well as his sister and brother-in-law, raised £775.

Kelly Donovan with her mum, Tricia Lisa Wolford held a Cupcake Break

At the time of going to print The Cupcake Break has raised nearly £10,000 and money is still coming in. See the article on page 7 to find out how you can join in the fun!

Raising awareness in the media Unsurprisingly there is a heightened awareness of ovarian cancer in the media during Ovarian Cancer Awareness Month – press, television, radio, and electronic media all participate in helping to spread the word about ovarian cancer and its symptoms. Ovarian Cancer Action is enormously grateful to all of our Ovarian Cancer Voices who agreed to share their experience of the disease in the media, before and during awareness month. With everyone’s help we secured coverage in a number of publications, including:

Kelly Donovan raised nearly £1,500 in memory of her mum, Tricia, who died last year. She says: ‘I’ve vowed to strive to do as much for ovarian cancer awareness as possible, to try and prevent other women

We are so impressed with each and every one of you. Thank you for choosing to support Ovarian Cancer Action. We really appreciate the time and effort that went into training and completing the half marathon. We are still collecting your fundraising stories and donations but we already know that your efforts have been hugely successful. Thank you to everyone who pulled out the stops for us!

• Prima • The Mail on Sunday’s You magazine • The Sunday Express’ S magazine • Woman’s Weekly • Chat • Asian Woman • She • Zest • Sunday Mirror • Heat: • Third Sector • Handbag.com • MSN: Scottish Education Journal • The Jewish Chronicle’s Health Supplement

Thank you from the team! The results we achieve during Ovarian Cancer Awareness Month are so worthwhile – and each year seems better than the last. Chief Executive, Peter Reynolds says: ‘I know I speak for everyone at Ovarian Cancer Action when I thank all our fantastic supporters for their help, encouragement and hard work during Ovarian Cancer Awareness Month. This year’s awareness month has been another amazing success.

Chair, Allyson Kaye and Peter Reynolds

‘We’re so pleased to have achieved what we did during March but it’s even better to know that the momentum is continuing – from raising funds to raising awareness – and this will be a really exciting year for our charity.’

• Royal College of GPs news • BBC online

CAN YOU HELP?

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

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: Gurbachan Johal Treatment for ovarian cancer was the hardest thing I have ever gone through, but now I am sharing my experience to help raise symptoms awareness. In December 2008 I had a really bad cold, which I just couldn’t shake off, so in January I went to see my doctor. She sent me for a blood test and when I went back to see her for the results, because my stomach was hard, she made an appointment for me to have a scan in February.

‘Becoming an Ovarian Cancer Voice has been an amazing experience, which has helped my self-confidence and given me a new sense of purpose.’

Nothing to worry about In early February I was very unwell – unable to eat anything despite feeling hungry; and despite feeling tired, unable to sleep because I felt so uncomfortable. My appointment at West Middlesex Hospital was on 11 February, and I had all the investigations, including an ultrasound and CT scan, which showed I had multiple fibroids. The hospital told me it was nothing to worry about and that I just needed to have a hysterectomy, which was booked for March. Despite me telling them I couldn’t wait that long they said it was the best they could do. After talking it through with my husband we decided to consult a specialist privately, and she saw me the following week and operated at the end of February. It was during the operation that she discovered my cancer, and an omental biopsy revealed that it was stage 3 ovarian cancer. I was still very weak from the operation when I was told the news, and I cried all the way home. My husband was a tower of strength and held my hand.

The hardest thing I was referred to Hammersmith Hospital where my consultant was Professor Hani Gabra. Treatment for ovarian cancer was the hardest thing I have ever gone through, but I was so lucky to have my husband (a great nurse!) and lots of friends and family members to support me – day and night.

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Gurbachan Johal

My husband has been an absolute rock. He’s held me close when I’ve felt down, and wiped away my tears when I’ve cried. He’s rubbed my legs when they hurt, dressed me when I couldn’t dress myself, and cooked when I couldn’t. His support and love has made me strong. My friends and family members have also been wonderful. My son helped me by researching what my treatment would involve. My brothers and sisters phoned regularly, and visited to massage my legs when they were painful. My sister-in-law flew in from Canada to look after me for four weeks; and my husband’s family came to our house to cook for me, and phoned every day. I know I am very lucky.

Talking helps My treatment included three chemotherapy sessions, another operation to debulk the ovarian tumour; and then a further three chemotherapy sessions. During this time I found that talking to

people who had come through cancer was tremendously helpful – it was so useful to see that despite what they had been through they were OK. Knowing this has made me determined to try and help others in the same way. I also believe passionately that we must raise awareness of the symptoms of ovarian cancer to help women be diagnosed earlier and improve their chances of surviving.

Sharing my experience Since I’ve finished my treatment I’ve been helping Ovarian Cancer Action. I volunteered to become an Ovarian Cancer Voice, and I appear in the film for the online symptoms awareness campaign, as well as the new leaflet. I’ve also spoken on the radio and been interviewed by Asian Woman magazine. Becoming an Ovarian Cancer Voice has been an amazing experience, which has helped my

self-confidence and given me a new sense of purpose. I’ve given talks at local temples to tell other women about ovarian cancer and make them aware of the symptoms. I’ve met twice with my local MP, Alan Keen, and I’ve visited numerous local shops and clinics asking them to display symptoms awareness materials. If nothing else, I have kept myself busy! But all joking apart, I know how much strength I have drawn from talking to other people who have had cancer, and I hope that sharing my experience of ovarian cancer will help others too. RAISE YOUR VOICE!

To join Ovarian Cancer Voices and help us make sure the voices of people affected by ovarian cancer are heard, visit our website at www.ovarian.org.uk or email voices@ovarian.org.uk

funding research | raising awareness | giving a voice


F E A T U R E

Keeping ovarian cancer on the agenda Ovarian Cancer Action is committed to ensuring that ovarian cancer stays on the political agenda; and Ovarian Cancer Awareness Month was a useful opportunity to raise awareness amongst politicians before the General Election. Ahead of the Awareness Month, Lee Scott, supporter and MP for Ilford North, tabled an Early Day Motion (EDM) in Parliament, which welcomed Ovarian Cancer Awareness Month. It recognised the importance of women being diagnosed with the disease at an early stage and welcomed allparty commitment to improve access to diagnostic tools for cancer. It also recognised the good work of Ovarian Cancer Action. The EDM received 61 signatures from MPs across the main political parties.

Launching Awareness Month Our Chair, Allyson Kaye, launched the Awareness Month by speaking at an event hosted by the Conservative Women’s Organisation at the Conservative Party’s Spring Forum. The event was well attended by senior members of the Conservative Party, including the Secretary of State for Health, Andrew Lansley MP.

During Ovarian Cancer Awareness Month our Chief Executive, Peter Reynolds, and our Chair, Allyson Kaye, attended a reception at 10 Downing Street with some of our supporters (see page 10 of this newsletter).

Open letters Before the General Election, we sent open letters to the three main political parties, asking them to publicly state their commitment to seven key initiatives (see panel below) which will help improve the outcome for women diagnosed with ovarian cancer. Ovarian Cancer Action agreed these initiatives in consultation with our Ovarian Cancer Voices, and we received replies to our letters from both the Conservatives and Liberal Democrats. You can view these on the Ovarian Cancer Action website at www.ovarian.org.uk/ general_election2010.asp

Staying on the Government’s health agenda Now the new Conservative and Liberal Democrat Coalition government is in place our public affairs work will continue to be extremely important – to keep ovarian cancer on its health agenda and contribute to the policy development process. Ovarian Cancer Action will continue its campaign to ensure access to diagnostic tests is a key priority for the current Government so that more women are diagnosed at an early stage.

CAN YOU HELP US?

We want to ensure that improving the outcome for women affected by ovarian cancer is firmly on the Government’s agenda, and the agenda of all the political parties. If you would like to support our public affairs work on a local or national level, please get in touch. Call Sam Gibson on 0300 456 4706 or email her at sgibson@ovarian.org.uk.

Ovarian cancer: 7 Key Priorities Ahead of the General Election, we asked the future Government to:

1 2 3 4 5 6 7

Address the need to provide women and healthcare professionals with more information on the risk factors and symptoms associated with ovarian cancer by supporting initiatives to promote greater awareness of the disease. Deliver on the previous Government’s commitment to ensure fast access to diagnostic tests for women of all ages presenting to their GP with symptoms that may suggest ovarian cancer. Support earlier diagnosis of ovarian cancer by investing in new training programmes for GPs and other primary care professionals, and by developing new cancer risk assessment tools. Consider the results of the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS) (expected to report in 2015) and introduce a national screening programme, should the results of the trial indicate it would benefit women. Protect and develop the role of the Clinical Nurse Specialist, and ensure that every woman with ovarian cancer has access to a Clinical Nurse Specialist to provide support and guidance at every stage of her cancer journey. Provide tailored support for women living with and beyond treatment for ovarian cancer, to ensure they have the best quality of life, access to high quality physical and psychological care, as well as information and support. Maintain Government support for voluntary sector ovarian cancer research funding by protecting the Charity Research Support Fund.

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

Sponsored tattoos raise £4,000! In March, over 30 people got tattooed to show their support for Ovarian Cancer Action in memory of Rebecca Brown, who tragically lost her life to ovarian cancer at the age of 25, after a four year battle with the disease. It was originally Rebecca’s idea to have the ovarian cancer tattoo done, so her family and friends decided to be sponsored to have the tattoo done in her memory. The tattoo marathon took 15 hours and tattooist Fedja Jasarevic of Absolute Ink Tattoo Studio, a close friend of Rebecca’s husband, donated the £400 fee to Ovarian Cancer Action. Rebecca’s mum, widower

Rob, dad Martin, sister Fran, and her brothers Matthew and Liam were among those who had the tattoo done. Claire Scates, a friend of Rebecca’s said: ‘Originally I thought we were going to raise around £500... so it’s amazing to have raised over £4,000! More people will be getting the tattoo. We’ve been featured in the local paper and our Facebook group, PANTS (Positive Action Now Targeting Survival), is growing by the day. I hope this makes a difference to your charity. It's really opened the eyes of those who knew nothing about the disease, and that is worth everything in itself.’

A marathon £50,000!

Tattooed support

A permanent reminder

Rebecca & Rob cutting the cake

Just married, Rebecca & Rob

Rebecca with her friend Claire

Rebecca with her parents

Running strong! the blistering heat of the Sahara Desert, while carrying everything they need for the race on their backs – an astounding feat!

Friends, Kirsty and Jenny

Ovarian Cancer Action’s team of 23 runners in this year’s Virgin London Marathon pulled out all the stops to raise an amazing £50,000 for our charity – nearly four times more than last year! Special congratulations go to Kirsty Flockhart, who alone raised nearly £15,000, thanks to the support of her family and friends.

Madeline Seddon

Kirsty ran the marathon with her friend Jenny Varley and completed the race in 5 hours 21 minutes. We would like to say a huge thank you to all our runners for doing such a fantastic job – every penny you raised for Ovarian Cancer Action is really appreciated, and will help us beat ovarian cancer.

Phil Cooper

Supporters of Ovarian Cancer Action have been running other challenging races to raise funds for our charity.

The toughest foot race on earth Phil Cooper completed the Marathon des Sables in April. Considered to be the toughest foot race on earth, competitors cover 151 miles over six days in

Phil completed the race and raised nearly £6,000 for Ovarian Cancer Action in memory of his mother, Margaret. He says: ‘Although it’s known as the toughest foot race on the planet it’s nothing compared to what cancer sufferers go through. Hopefully the money I raised will at least help other women live longer and continue the small steps towards a cure for ovarian cancer.’

BUPA London 10,000 On 31 May 17 runners took part in the BUPA London 10,000 to raise money for Ovarian Cancer Action. Between them they raised £7,000 for our charity. Well done everyone, and thank you for your support!

FANCY A CHALLENGE?

Thank you! – Rose Baldwin, Terence Bird, Louise Bradshaw, Phil Cooper, Eleanor Dittner, Sharon Dooley, Kirsty Flockhart, George Hall, Joe Hall, David Hart, James Lubbock, Hazel Martin, Nikki Moran, Vicky Priest, Simon Ratcliffe, Rob Rhead, Natalie Rideout. Madeline Seddon, Jenny Varley, Sue White, Emma Williams, Louise Williams, and Emma Winrow.

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Would you like to take part in a running event, or another challenge, to raise funds for Ovarian Cancer Action? To find out more, visit www.ovarian.org.uk/events/running.asp or call Hannah Greenshields on 0300 456 4704 or email her at hgreenshields@ovarian.org.uk funding research | raising awareness | giving a voice


F U N D R A I S I N G

Fantastic fundraisers Charity Dance Show

Kerry Harris and Kerry Harris organised a charity dance show in memory of her grandmother, who died in 2007. Dance students at the Styled Stepz Dance School run by Kerry were sponsored by family and friends to take part in the show and raised more than £600.

dancers

Kerry explained: ‘We feel that ovarian cancer is overlooked, and often overshadowed by other types of cancer. We wanted to raise awareness of the disease and funds for Ovarian Cancer Action, and our dance show was an ideal Pauline a nd Harold way to help.’ Our thanks to everyone who was involved. ___________________________________________________________________________________

Introducing the ‘Eva’ bracelet! Jewellery designer Helen Bagwell has created a beautiful bracelet especially to raise funds for Ovarian Cancer Action.

Helen and her two sisters run their jewellery company, Longfield Designs, from the family farm deep in the heart of Somerset, and they decided to support Ovarian Cancer Action after losing their aunt to ovarian cancer.

Golden Wedding celebrations Our thanks to Pauline and Harold Sheffield who celebrated their Golden Wedding Anniversary in March. In lieu of gifts they decided to ask for donations to Ovarian Cancer Action in memory of their friend, Margaret Kemp, who died of ovarian cancer. They raised more than £1,000. SEND US YOUR STORIES!

Supporters of Ovarian Cancer Action do some truly amazing things to raise money for us, but often we only hear about it when a cheque arrives in our office. We would love to include your stories and photographs in our newsletter. Please remember to take your photographs on your camera’s highest quality setting, and if you would like to receive our free guide on taking the best photographs then please contact us. Email hgreenshields@ovarian.org.uk or call 0300 456 4704.

The ‘Eva’ bracelet is made with glass pearl and Tibetan silver beads and £1 from each bracelet sold will be donated to Ovarian Cancer Action. The bracelet costs £7.00 and Longfield Designs are also offering free postage and packing on this item. ORDER YOUR BRACELET

Thank you! Thank you to everyone who has raised funds for Ovarian Cancer Action during the past few months. Your generosity and support is truly appreciated: Dawnmarie Alderson, Sophie Benzie, Gary Bettis, Joy Binns, Sandie Clark, Edgware Circle of Eight, Hayley Fahy, Mary Fletcher, Jo Freeman, Edwina Green, Laura Green, Joanne Hogg, Claire Holt, Rachelle Jackson, Peter, Helen and Steven Jamison, Valerie Jerwood, Gurbachan Johal, Amanda Lansley, Vanessa Line, Sharon McDonald, Angela Osman, Melissa Parkes, Katrina Pringle, Anthony Quant, Stuart Robinson, The Sandra Charitable Trust, Elaine Schofield, Jo Sherrington, Vicky Smith, Jo Wills, Claire Wood, Kate and Christopher Willis and the girls from St Margaret’s School, Bushey, and Louise Young.

To order an ‘Eva’ bracelet visit the Longfield Designs website at www.longfielddesigns.co.uk or email info@longfielddesigns.co.uk or call Helen on 07801 546 859.

The Cupcake Break Thanks to all the cupcake companies that got involved and everyone who took part in the Cupcake Break during Ovarian Cancer Awareness Month, including: Jackie Abbott, Janet Astle, Amanda Blake, Emma Bevis, Anna Breeze, Eleanor Brownlee, Janice Crossman, Diane Corrigan, Bob Davis, Sarah Frankpitt, Emma Grey, Laura Hamilton, Carol Herning, Emma Hogarth, Linda Inchenko, Sarah Luxton, Paula Newell, Elinor Olisa, Clare Picone, Yvonne Plaskett, Hayley Robinson, Kate Rowan, Sandra Ryding, Emma Scott, Helen and Katherine Staniforth, Kate Willis, Lisa Wolford, Megan Woods and Lisa Young. (See the article on page 7 to find out more about The Cupcake Break.)

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

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Ovarian Cancer Action Newsletter Summer 2010