CRY Update Magazine - Issue 46 by Cardiac Risk in the Young

News and Events from Across the UK

Issue 46 Summer/Autumn 2007

In this issue: z Meet our County Representative Deborah Anderson, Durham

z Founder & Chief Executive’s Newsletter Alison Cox MBE

z Deputy Chief Executive’s Report Steve Cox, Deputy Chief Executive

z News from the CRY office z Dr Mary Sheppard’s Report From the CRY Centre for Cardiac Pathology

z Save our Athletes z CRY Parliamentary Reception 2007 Speeches and photos

z CRY International Conference 2007

Every week, at least 8 apparently fit and healthy young people die in the UK from undiagnosed heart conditions.

z CRY Heart of London Bridges Walk 2007 Kathryn Harries report and photos

z Julie’s interview with Lorna Carby z Kids for CRY Fundraising Our Junior Fundraisers

z Our Fundraisers Fundraisers with their stories and pictures

z Raising Awareness in the media

CRY’s mission is to reduce the incidence and impact of young sudden cardiac death and support those diagnosed.

Press coverage involving CRY

Unit 7, Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey, KT20 5LR. Tel: (01737) 363222 Fax: (01737) 363444 e-mail: cry@c-r-y.org.uk web: www.c-r-y.org.uk z www.sads.org.uk z www.cry-csc.org.uk

Contents Meet our County Representative

Newsletter from the Chief Executive

2–6

Reports from the CRY Office, CRY CSC and CRY CCP

7–10

Save our Athletes

Parliamentary Reception 2007

International Conference 2007

CRY Heart of London Bridges Walk 2007

Julie's Interview with Lorna Carby

Kids for CRY wordsearch and facts

Kids for CRY Fundraising

17–19

Running for CRY

Our Fundraisers

21–36

Raising awareness in the media

37–70

Bulletin Board

Steve Cox CRY Deputy Chief Executive Thank you for your patience for enduring the long wait for Update 46. We have had 'some' calls at the office enquiring whether we are still putting together an Update brochure and checking that photos and write-ups have been received. Well, after some hiccups, it has been completed. Following on from Issue 45 we have focused on all events to December 2007. Please inform us if we've missed anything so that it can go into Issue 47. Inevitably we have had to carry some events over but we have tried to include as much as possible. Mark Fox brought a great deal of understanding and skill to his role at CRY which was reflected in our publications. It has been a real challenge to find someone to take over from where he left off, and taken longer than anticipated. We are very pleased to welcome Daniel McCabe to the post of Publications Manager with this Update as his first job. We intend to publish Issue 47 shortly after to cover the period from January to 1 June 2008. Daniel is one of a number of new staff we have employed over the past six months. We have two new screening co-ordinators at the CRY Centre for Sports Cardiology and one in the CRY office. We have further supporting roles with our accounts, post and answering the phone. With at least two articles published in the local press every day, Sue has an increasingly tough remit gaining all the permissions to use articles on the web and in our Updates. If you are disappointed that an article is not included in this Update or is not on the website it will usually mean we simply have not been granted permission to use it. Please call us if this is the case and we can discuss possible alternatives as to how we could gain the required permission. Our three research fellows are travelling the UK with our screening team as this programme continues to develop. When they are not on the road they are supporting families at the CRY Inherited Cardiovascular Disease Clinic at King's College Hospital under the supervision of Dr Sharma. In most cases families are being seen within three weeks of receiving the referral letter from the GP, negating the unacceptably long waits so many of you have endured after your tragedy. Facilitating the expertise for fast track referrals is core to the work we do. After the first Bridges of London Walk, Rebecca has our second event well in hand, with places already getting booked up. Furthermore, sponsors are starting to come forward to help fund some of the expenses which is always greatly appreciated. We also have the Fundraising Standards Board stamp of approval to ensure that supporters can be confident in the way all aspects of fundraising are managed. Your fundraising achievements, both for CRY events and in your local communities, continue to astound everyone who works in the office and your courage and commitment at the time of such terrible grief humbles us all. Many thanks to Tim Woolley at Press Craft, Lithographic Printers, for all his advice and support in subsidising the printing of this update. With his help we have been able to reduce our printing costs while significantly improving the quality of the finished product. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without prior permission of the Editor. The Editor and Committee welcome letters but reserve the right to edit when necessary and to withhold publication. Any opinion or statement by the author of any article or letter published does not necessarily represent the opinion of the Editor, or its Officers. Articles pertaining to health related topics are FOR INFORMATION ONLY. Readers should obtain advice from their own practitioner before attempting to diagnose or administer any medication. Mention of any products or procedure should not be considered as an endorsement for said product or procedure.

Meet Our County Representative Deborah Anderson County Representative for County Durham I was truly blessed to have four healthy, fit children. Three daughters and one son. Then, in 1998, my son Dean caught a chest infection and my family doctor who examined him said she thought he may have a heart murmur and would like to have him checked at the hospital. This check took place a few months later and the paediatrician told us that Dean did have a heart murmur but it was what they called an ‘innocent murmur’ and assured us there was no cause for concern. The next year at Dean’s check the doctor was not happy with his heart murmur and sent us straight to hospital where Dean had an echocardiogram. The next day we were told Dean had a serious heart condition called Obstructive Hypertrophic Cardiomyopathy. Our whole world was turned upside down. You don’t expect something like this when your child has been so healthy. We were told one of the risks is sudden death. Of course some patients with this condition can live to an old age. I felt like my son was a living time bomb waiting to explode. I wanted to give him everything and show him the world. I just didn’t know how long I would have my son and prayed that he would be one of the lucky ones and would live to an old age. Dean would be monitored every six months and was given medication. He could not participate in any sports and had to try not to exert himself. He was nine years old. On 3 August 2005 Dean went out with his twin sisters and his nephew. He was so proud to be an uncle. Later that day he was playing out the back with his sister and nephew. He got out of breath so sat down to rest. Then he collapsed. His sister tried to resuscitate him and dialled for an ambulance. Her friend called me. That was it, my worst nightmare coming true. My husband and I rushed to my daughter’s; the paramedics were already with Dean. After what seemed like an eternity one of them came to me and said he was afraid Dean was not responding and they would take him to hospital. I went in the ambulance with him and they continued to work on him. They also tried so hard at the hospital but to no avail. My world was now completely shattered. We were all devastated. Dean had accepted his condition so bravely. It didn’t change his loving, caring personality at all. Dean had continued to work hard at school and had so many plans for his life. He always put other people before himself and would do anything in his power to make people happy. He was so loved and so popular wherever he went. I felt so incomplete. Family and friends helped tremendously but that didn’t give me back my son. I just didn’t know how I would keep on going. Then I thought of how brave Dean had always been and how he always wanted to help others. I had already been onto the CRY website to find out as much as I could about Dean’s condition. I decided that I would try to help raise awareness for CRY and hopefully help other families from experiencing this tragedy. My family and Dean’s school friends have now also raised funds through various charity nights for CRY. We were lucky in the respect that Dean had been diagnosed. I am sure if his condition had gone undetected he would have certainly collapsed at a much younger age and, although Dean was still so young, at least we were blessed to have him in our lives for 15 years when it could have been much less. I am thankful for that, as Dean gave us so much love and pleasure. This is why it is so important for screening of children, especially before they are 11 years as this is the age when they really start to play competitive sports at school. People read about it in papers and sympathise but don’t actually realise they could have a member of their family who has an undetected heart condition until it’s too late. My daughters and I have only recently been screened and I am sad to say that both myself and one of my daughters have the early stages of Hypertrophic Cardiomyopathy (HCM). However, ours is nowhere near as severe as Dean’s was. We are not on medication, so we will remain positive and stay focused, hoping that more research will help us. I am proud to be a representative for CRY and will continue to raise awareness and funds to try and get compulsory screening for children in the UK and to help with research, as there is still so much that is unknown. We also have a website for Dean. This has also helped me enormously: www.dean-henderson.memory-of.com

Issue 46

www.c-r-y.org.uk

Cardiac Risk in the Young

Newsletter from the Chief Executive Alison Cox MBE

June

CRY Founder & Chief Executive 2007 has been another year when we have again taken on four more staff to cope with the tremendous progress in the development of our services. This includes receiving endorsement from the Department of Health for our fast track services for pathology, screening, and support; setting up of the CRY Centre for Cardiac Pathology at The Royal Brompton under Dr Mary Sheppard which uniquely includes the funding of coroners referrals requiring expert cardiac pathology; employment of a Screening Administrator to co-ordinate online bookings; and the training of our third group of Bereavement Supporters under the aegis of new course tutor Andy Usher who has also taken on the role of Bereavement Support Co-ordinator.

May Ray Wilkins becomes CRY Patron I am delighted that former international footballer Ray Wilkins MBE (left) has become a Patron. Midlands Regional Bereavement Support Day (May 12) 32 people attended this event in Birmingham at the Solihull Arden Club. They were divided into five small groups, each one being supervised by a CRY Bereavement Supporter. Appreciating the luxury of time to talk, share experiences, listen and to learn they were not alone were comments made at the end of a very emotional day. www.c-r-y.org. uk/bereavement_support_day.htm

CRY Representative on TV (4 June) CRY Divisional Representative for the East of England and Bereavement Supporter Caroline Gard was featured on Anglia TV talking about her clinic in Colchester on 4 June. Caroline's determination and commitment in achieving her goal to introduce regular opportunities for screening in her area has received tremendous support from her community who have raised over ÂŁ100,000 for CRY's screening programme. This month also saw publication of Dr Jonathan Holliday's article on sudden cardiac death in MIMS Cardiovascular (Volume 2, Number 3, 2007). Raising awareness of SCD in this academic journal circulated to all GPs has been something Jonathan has been focused on achieving for some time. There have been countless incidents of GPs not identifying clear cardiac symptoms in young people that result in appalling unnecessary tragedies, and having the support of such a pre-eminent doctor raising awareness and supporting screening has been of considerable importance in the development of our schools screening programme. Jonathan is the school doctor at Eton College, which became one of the first private schools to introduce a screening programme and has led to significant interest from others in the field of education.

Dr Sanjay Sharma

Dr Elijah Behr

CRY Bereavement Supporters (left to right): Joan Hillier, Diane Tolley, Ursula Bick and Julie Hatton

CRY Chatroom â&#x20AC;&#x201C; Talking Point In response to popular request we have launched Talking Point, a place where young people (aged 35 and under) who have been diagnosed with a life-threatening condition can talk to other young people in similar circumstances. So that users of the CRY chatroom have the opportunity to be online at the same time we would encourage them to log-on Monday evenings from 7pm. However, please note that Talking Point is not for the bereaved. If you would like to talk to a Bereavement Supporter please call the CRY office.www.c-r-y.org.uk/talkingpoint.htm 2 |

Cardiac Risk in the Young

Dr Mary Sheppard

Michael Burgess

www.c-r-y.org.uk

CRY Family Conference Day (9 June) For the last four years we have run an Annual Bereavement Support Day, incorporating both expert medical information and workshops for those bereaved by a young sudden cardiac death. Evaluation forms received suggested that those who found the expert medical information helpful would have liked more time spent on these talks (particularly requesting the opportunity to ask questions) and those who benefited from the bereavement workshops said they would have liked more time for bereavement support. So from 2007 I decided to split the day into two separate events with an Annual Family Medical Conference and Regional Bereavement Support Days to be held in different parts of the country throughout the year. The Family Medical Conference was held at the Institute of Child Health in London. We were again fortunate enough to have our expert consultant cardiologists Dr Sanjay Sharma and Dr Elijah Behr speaking and explaining the lifethreatening conditions that can affect young Issue 46

Newsletter from the Chief Executive people. Expert cardiac pathologist Dr Mary Sheppard and Her Majesty's Coroner Michael Burgess also explained their roles after a sudden cardiac death. These talks were followed by workshops where speakers in small groups addressed any questions. The day was considered informative and helpful by those bereaved families seeking to understand how it is possible for a fit and healthy young person to die from a heart condition that they have no idea they have. www.c-r-y.org.uk/family_conference_day.htm Heart Screening Awareness Partnership (18 June) We were absolutely delighted that our Patron David Walliams could lend his considerable support to the launch of the Heart Screening Awareness Partnership, a joint initiative between CRY and Philips Medical Systems. Promulgating the message in the community that heart disease is not just a problem for the elderly – it kills at least 8 young people every week in the UK – is an uphill battle but one crucial to win as so often clear cardiac symptoms go unrecognised by both the public and medical personnel. David made a very significant contribution to the launch of the partnership by making a DVD that included Bradley Farrow and Jack Mason, members of CRY’s Surgery Supporters Club (www.c-r-y.org.uk/ssgroup.htm). The DVD, which is available on our website, shows young people that screening is not an intimidating process. As David says, "The screening process is so easy, it tickles a little and it's a bit funny seeing inside your heart. But the doctors are very good at what they are doing, so you should not be scared. The tragedy is that the deaths of so many young people from cardiac problems are preventable. The support we have from Philips will help us raise awareness and get more young people into the screening centres." The sooner a patient is diagnosed, the more quickly support can be offered to help manage any situation. Philips is donating advanced medical equipment that will facilitate screening and research. Gala Dinner (23 June) Andrew Castle, GMTV Presenter and former Great Britain Davis Cup Player, hosted a gala dinner in central London WinTennis, who divided profits from the event with CRY. Celebrities attending included Britain's Davis Cup Captain John Lloyd, Peter Fleming who, with John McEnroe, was the dominant men's doubles partnership in Issue 46

the 80's, and CRY Patron Jeremy Bates. Having been asked to speak at this inaugural event I was delighted to spot CRY Trustees, Sue Mappin and Tony Mason, supporting this glamorous dinner on the eve of Wimbledon. Lorraine Kelly TV programme Lorraine Kelly's GMTV programme LK Today offered us an outstanding raising awareness opportunity when they invited Margaret and James Lancaster to talk about the tragic loss of their son, Robert (left). It is only when people hear personal stories from families that they truly appreciate the nature and impact of young sudden cardiac death. The immense courage of our families in publicly speaking about their tragedy is something that we very much appreciate.

July CRY's Annual Raising Awareness Week (7–15 July) Perhaps our most prestigious annual event is our Parliamentary Reception in the House of Commons Terrace Marquee, held on Wednesday 11 July during our Raising Awareness week. By popular request David was again our celebrity guest. He said "I think tonight really belongs to the young people here who suffer from this condition and I think their bravery is an inspiration to all us.'' Opera singer and new CRY Patron Kathryn Harries surprised the guests with a medley of beautiful songs designed to raise awareness of her Bridges Walk, the first leg of which had been completed from Hampton Court to London the previous Sunday. Unfortunately the reception clashed with what was popularly referred to in ‘The House’ as "Blair's Bash" – Tony Blair's farewell dinner for his MPs, which left us bereft of a large majority of the Labour MPs who usually frequent our reception. However, we still had an excellent turnout of in excess of 30 MPs, a number which would be the envy of many charities. Other guests attending included members of our Surgery Supporters Club, CRY Patrons Jeremy Bates, Simon Halliday, Pat Jennings, Gary Longewell and Andy Scott, representatives from CRY's Northern Ireland Screening clinic, event sponsors Philips, medical professionals, representatives from sporting organisations and our office and screening staff. Speakers included MPs and leading medical experts.

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Cardiac Risk in the Young

Newsletter from the Chief Executive Andy Burnham MP (Chief Secretary to the Treasury): "I think the onus is on all of you to put pressure on all of us to do even more and, (as) you say, hopefully one day we will make a difference." Professor Roger Boyle CBE (National Director for Heart Disease): "There is still an awful lot to be done, but CRY has really been filling many of the gaps that the NHS has not been able to do, which is to sort out all those crucial issues, giving impartial advice, getting fast track to people who do have the expertise to the families that suddenly find themselves in these impossible circumstances." Ann Keen MP (on her first day as Parliamentary Under Secretary for Health Services at the Department of Health): "I know there is an awful lot of discussion at the moment around screening and how best families can feel more secure. The tragedy that would happen to a family when you would lose a child, a brother, a sister, a cousin, a friend – all of those family names we can mention, you can't really understand at all unless it has happened to you. What I would want for all of you is what I would want for myself." Vince Cable MP: "Premature death, death amongst the young is particularly shocking and here is…something that is eminently avoidable in a prevention screening. If the system works, a lot of these deaths could be avoided." Dr Sanjay Sharma: "Apart from diagnostics and these physiological goals, CRY has also been pivotal in identifying the prevalence of things like Hypertrophic Cardiomyopathy. Nobody in the world has actually ever done that in sportsmen. CRY has just identified that conditions like Long QT are more common than Hypertrophic Cardiomyopathy. Again, nobody has ever done that before." www.c-r-y.org.uk/CRY_parliamentary_reception_2007.htm CRY Patron Kathryn Harries in Heart of London Bridges Walk, Part One (7 July) The first leg of this walk began with the CRY party leaving Hampton Court Bridge after a 7am breakfast for the 32 mile trek, finally arriving at Tower Bridge at 8.30pm. Kathryn accumulated friends and family en route, stopping briefly for radio interviews with LBC and Southern Counties radio and a much needed foot massage from friend Jill Philips. Heart of London Bridges Walk, Part Two (15 July) This took place with 400 supporters arriving from all over the UK who between them raised a stupendous £68,000! The superb weather contributed to an emotional 4 |

Cardiac Risk in the Young

day, with 82% walking in memory of a young friend, partner, sibling or child – deeply loved and tragically deprived of the luxury of having a life to live. Save Our Athletes (26 July) The second part of our Philips Heartcare Partnership launched the Save Our Athletes Research Project and found me on 26 July circuiting London's TV studios with Rob Hayles interviewed on Newsnight three times cycling Olympic medal holder Rob Hayles MBE. Rob's long day promoting this initiative culminated with an interview on Newsnight. Running in tandem with Rob's interviews, Olympic medallists Mark Foster and Karen Pickering attended a promotional event at the Waterfront Leisure Centre in London where they were amongst the first elite UK athletes to be screened.

August Nova article (21 August) On 21 August Michelle Wilson was invited to write an article for Nova International on participating for CRY in the BUPA Great North Run in memory of her brother Kevin. Nova put the article in their online magazine. Michelle said "I know Kevin will be very proud of me taking on such a challenge just ten days after the first anniversary of his death and for raising money for CRY, so that they can continue their work and try to prevent Sudden Arrhythmic Deaths from occurring as often as they do." Department of Health's endorsement of CRY's Co-ordinated Fast Track Services for Affected Families This month we welcomed a ringing endorsement from Professor Roger Boyle CBE, National Director of Heart Disease when he congratulated CRY for its "ongoing role in the development of these services." These include: z Fast track coroner/pathology service managed by histopathologist Dr Mary Sheppard and funding coroners' young sudden cardiac death referrals to the CRY Centre for Cardiac Pathology at the National Heart and Lung Institute Imperial College London, Royal Brompton Hospital z Fast track screening service managed by consultant cardiologist Dr Sanjay Sharma at the CRY Inherited Cardiovascular Disease Clinic, King's College Hospital, London z Fast track athletes screening service managed by sports scientist Professor Greg Whyte at the CRY Centre for Sports Cardiology based at the Olympic Medical Institute z CRY Surgery Supporters Club providing counselling, support and help for those diagnosed and holding bi-annual meetings with a counsellor and consultant cardiologist z Bereavement Support through a network of trained individuals whose family suffered a young sudden cardiac death and regional Bereavement Support Days in the North, Midlands, Southwest and Southeast.

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Issue 46

Newsletter from the Chief Executive September

October

Northern Ireland deaths Four young sudden deaths in Northern Ireland received considerable media coverage and lead to such an overwhelming demand for appointments at CRY's Northern Ireland Screening Clinic that it almost brought our office to a standstill. Our screening team responded swiftly and pulled out all the stops, with Screening Manager Anthony Shaw forsaking evenings and weekends to meet this unprecedented situation. Silent at Heart (4 September) I was privileged to be able to go round this stunning exhibition on my own prior to the launch. I found the artwork of these sixth formers deeply moving and extraordinarily perceptive.Congratulations to all involved and a warm appreciation of the enormous amount of work, innovative interpretation and commitment to the young people who participated and their tutors and of course to Mauricio Vinvenzi who translated his story to the students in a way that made it so real, having lost his father at the age of 32.

Austin Mitchell joins APPG (10 October) Austin Mitchell MP became the 105th member of our All Party Parliamentary Group (APPG). CRY International Conferences (12 â&#x20AC;&#x201C; 13 October) Our Annual International Conferences on Sports Cardiology and The Diagnosis and Management of Inherited Cardiovascular Disease were held in London. These academic conferences were awarded the maximum of 6 Continuing Professional Development (CPD) points each by the British Cardiac Society. 210 delegates representing all aspects of cardiac medicine attended from all over the UK including consultant cardiologists, doctors, research fellows, nurses and paramedics. Only doctors were charged, with all other applicants given free places and heard international speakers recruited from Italy, USA and South Africa as well as leading UK experts in their field. Feedback from conference delegates has been extremely positive, with compliments on the content of the lectures, the quality of the speakers and the overall organisation of the two days. Our report on the event appears on page 12. The conferences will be held again in October 2008. www.c-r-y.org.uk/ cry_ international_conference_htm Classical concert (13 October) A classical concert held in memory of Cecilia Barriga was highlighted in the Daily Mail. Professional musicians joined Cecilia's friends and family in performing at this charity concert to raise funds and awareness.

Dr Sanjay Sharma, who acted as Clinical Lead for the project, said "Nobody has actually touched the hearts of parents and school teachers like this project." Showcasing a range of pioneering works, reflecting the heartbreak felt by many young patients and their families, is an innovative way to raise awareness of sudden cardiac death. www.c-r-y.org.uk/silent_heart_press_release.htm Southwest Regional Bereavement Support Day (8 September) Ten people attended this event which was held at the Bristol Golf and Country Club, a wonderfully tranquil location over-looking panoramic views of the Severn Bridge and River. CRY Bereavement Supporters (left to right): Barbara Holland, Diana Bower and Vera Looker

The objective of taking bereavement support to the regions is to make it accessible to all and having lower numbers in no way diminished its impact or our resolve to keep offering this service into the community. www.c-r-y.org.uk/bereavement_support_day.htm

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CRY Schools initiative A unique initiative was launched in County Durham in memory of Kasia Ber when every secondary school governor received a CRY leaflet during the autumn term's Governing Body meeting and each secondary school received two copies of the CRY DVD. This was supported by an item in the Clerk's Report to Governors including contact details for CRY. Southeast Regional Bereavement Support Day (27 October) This event was held at Wimbledon Park Golf CRY Bereavement Supporters (left to right): Club, a superb location Margi Al Chalabi, Maralyn Bowen and Julie overlooking a lake. With Hatton delegates able to be divided into 5 groups, this again proved to be the most well attended of all our bereavement events. We are most grateful to Alastair and Stephanie Paterson for securing the excellent venue and funding the day in memory of their son James.

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Cardiac Risk in the Young

REPORTS FROM THE CRY OFFICE

Heart Rhythm Congress (30 October) I was invited by Consultant Cardiologist Campbell Cowan to chair a session on ‘Caring for the Families of SCD Victims’ at the Heart Rhythm Congress in Birmingham. Speakers included pathologist Dr Mary Sheppard, consultant cardiColin and Sarah ologist Dr Elijah Behr, Coroner Dr Roy Palmer, Mike Yates (Administrator for Chapter 8) and Colin Simpson who spoke about the impact of the recent death of his 20 year-old daughter Sarah and the critical importance of CRY's fast track cardiac pathology service. Media coverage On 8 October the Channel 5 discussion show The Wright Stuff explored the issue of being young and widowed and asked what it was like to lose a partner when you're still in your 20s or 30s. It also addressed the difference between terminal illness and sudden death. James and Katrina The show featured two women whose husbands had died of cancer and CRY Representative for Kent, James Brown, who appeared on the show to talk about the devastating loss of his wife Katrina who collapsed after the British10 kilometre race in July 2006. Also on 8 October Radio Five introduced the issue of young sudden cardiac death in a programme which featured footballer (and CRY Patron) Andy Scott with Dr Sanjay Sharma, who diagnosed him with hypertrophic cardiomyopathy after he felt unwell during a match. On Sunday 14 October I was invited, with Professor Bill McKenna and Dr Richard Shilling, to speak on the BBC Radio’s Five Live Report from 11am to 1pm with presenter Rachel Burden. The programme is Radio Five's flagship investigation programme and this was the follow-up to the 8 October edition. Five Live reporter Sarah Mills explored why screening that could save many lives is not routinely available on the NHS. Freelance journalist Barbara Lentin informed us that she was runner up in the Guild of Health Writers Consumer Writing Awards on 11 October for the feature she wrote for The Times on Nina Jelen and arrhythmias. She felt especially proud that it was this piece of three submitted for the award, as the subject had touched her very deeply during the research and writing.

November National Gallery Breakfast GlaxoSmithKline offered us an innovative opportunity to invite corporate guests for breakfast and a private viewing 6 |

Cardiac Risk in the Young

of ‘Renaissance Siena: Art for a City’ exhibition at the National Gallery. Guests attending this stunning exhibition on 20 November included CRY Patrons Kathryn Harries, Mark Cox and Roger Taylor, and members of our Board of Trustees led by Professor Greg Whyte as well as some CRY families. www.c-r-y.org.uk/cry_breakast_event.htm MP mentions CRY (25 November) Kevan Jones MP (left), Chair of the Cardiac Risk in the Young All Party Parliamentary Group spoke about CRY on SKY news in response to the Queen’s speech.

December Children's Charity Awards (28 December) Daily Mail readers and Royal Bank of Scotland (RBS) staff voted in their thousands for their favourite children's charities from which 90 were selected to receive the RBS ‘Children's Charity Awards' of £10,000. CRY was one of the lucky charities. Local MP Chris Grayling (pictured, centre) presented the cheque to us at the CRY office. Cursitor Street Christmas Lunch (7 December) Andy Jonesco was one of the many friends of John and Barbara Darby who were appalled to hear of the sudden death of their son Ryan. As Chair he chose CRY to be the main beneficiary from the traditional Cursitor Street Christmas Lunch. 590 people attended this extraordinary, mad event marking the run up to Christmas for the media side of the entire advertising industry. We started celebrations at 12.30 and were finally evicted at 5.30! A very generous private benefactor doubled the total amount raised by guests in memory of Ryan Darby to £9,600. Surgery Supporters Club meeting (9 December) Dr Sanjay Sharma was again the star guest for our Surgery Supporters Club meeting, held locally at The Haywain in Epsom. These events are for young people diagnosed with life-threatening conditions where they get an opportunity to meet each other, talk informally to an expert consultant cardiologist, and also have a group counselling session where they can discuss any social issues that have proved challenging. www.c-r-y.org.uk/ssgroup.htm

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Issue 46

REPORTS FROM THE CRY OFFICE

Kerry Gray CRY Office Manager The CRY website is often praised for offering a wide variety of articles and information, and for this issue of the magazine I would like to highlight quite a ‘mixed bag’ of interesting webpages. Starting with your stories, I would like to thank everyone who has made a submission to the ‘My Story’ section of the website. This has now been split into two separate pages. One page is for personal accounts of your tragedy – see www.c-r-y.org.uk/my_story_loss.htm and the other is for young people’s stories of living with a rare heart condition – www.c-ry.org.uk/living_with_condition.htm We do appreciate that these stories can be very difficult – and sometimes impossible – to write, but we receive a lot of feedback from visitors to the website who have found these personal accounts extremely helpful. CRY has continued its close work with Philips through the launch of the ‘Save Our Athletes’ research project. Read all about this at www.c-r-y.org.uk/simplicity.htm As many of you will know already, our fantastic video of CRY Patron David Walliams being screened also came about through our work with Philips. This video continues to be popular with visitors to the CRY website and we have made it even easier to find by adding links to it to several more pages, including the main ‘Screening’ and ‘Medical Information’ pages. Some of our other Patrons have also been busy recently. As reported elsewhere in this issue, Kathryn Harries was involved in two very successful walks for CRY in July. Photos and a write up of her 32 mile walk along the Thames path on 7 July can be found at www.cry.org.uk /kathryn_harries_bridges_walk_july7.htm The following weekend on 15 July, Kathryn was joined by over 400 CRY supporters on an 8k walk, crossing 8 London Bridges. Photos and a write-up of this day can be found at www.cry.org.uk/kathryn_harries_bridges _walk_july15.htm CRY Patron Andy Scott also took part in the 15 July walk. A few weeks later he was in several national newspapers promoting cardiac screening for footballers following the sudden deaths of players at Walsall and Seville and a close call for a player at Leicester. Some of Andy’s comments can be read at www.c-r-y.org.uk/andy_scott_ quotes.htm. As well as CRY Patrons championing our Issue 46

cause, we are also fortunate to have a number of MPs firmly behind our campaign. Kevan Jones MP, Chair of the CRY APPG, recently made mention of CRY in Parliament as part of his response to Queen’s Speech. Kevan’s comments about CRY can be read at www.c-r-y.org.uk/ kevan_jones_queens_speech.htm You can find a record of CRY’s Parliamentary endeavours, along with a full list of the MPs who are members of the CRY APPG, by going to www.c-ry.org.uk/parliament.htm Raising awareness events, fundraising events and screening events continue to be a central part of CRY’s activities. I have slightly tweaked the ‘Upcoming Events’ page so that it now lists various events, not just fundraising events. In particular, with our screening service going from strength to strength, the ‘Upcoming Events’ page is another way to stay informed of upcoming screening dates. Please visit www.c-r-y.org.uk/upcoming_events.htm to see what is coming up in the next few months. One of the biggest events in the last few months was the Great North Run. CRY had over 60 runners in the event, and supporter Pam Edmunds sent us her account of the event, which she ran with four friends. Read her write-up at www.c-ry.org.uk/edmunds_gnr_2007.htm Plenty of other CRY fundraisers have been busy running, cycling, bungee jumping and doing all sorts of other things to raise money and awareness. Read the latest fundraising event write-ups at www.c-r-y.org.uk/past_events_2007.htm That’s all for this issue. As ever, please do contact me if you have any questions or comments about CRY’s website, or if you would like to make a submission for any section of the website. My e-mail address is kerry@c-r-y.org.uk

Rebecca Zouvani CRY Fundraising Manager Some of the more unusual or challenging fundraising activities recently include the first leg of a 'round the world flight' to raise awareness of SADS, swimming the channel, selling sandwiches in a Mother Christmas and CRY outfit, a sponsored mini car rally, an archery match, the 3 Peaks Challenge, cycling from Falmouth to Surrey and a ‘Lap the Lough’ cycle event which consisted of riding one lap (95 miles) around Lough Neagh; various marathons, half marathons and triathlons. All your fundraising efforts, however straightforward and simple, are very much appreciated. Recent Corporate Fundraising support includes GlaxoSmithKline and the Trustees of the National Gallery donating use of the venue to enable us to hold a breakfast and private view of an exhibition at the Sainsbury Wing

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REPORTS FROM THE CRY OFFICE

of the National Gallery. The event was held on 20 November and was an opportunity to invite, thank and update some of our corporate supporters on CRY's progress and future plans. Chubb Company of Europe celebrated their 125th anniversary by organising fundraising events within the company and also helped fund our International Conference along with Shire Human Genetics and Human Kinetics. Philips Medical Systems supported the Parliamentary Reception in the summer and Persimmon Homes chose to support CRY as their main charity . As most of you will be aware, Gift Aid is an easy way for us to raise additional money without any cost to our supporters. When taking part or organising events involving the use of sponsor forms, please ensure that your individual sponsors complete their full name and home address including post code. We cannot claim Gift Aid on company donations or if your sponsors include their work address instead of their home address. When organising your fundraising activities, the easiest way to ensure that money is collected quickly and Gift Aid claimed automatically is to set up an online donations page such as via Justgiving.com. Justgiving.com have selected CRY to be one of its premium partners and we are working together to maximise use of and income raised via Justgiving; provide and promote more resources and tools for supporters using Justgiving and ensure that our reconciliation process is made easier by using relevant codes.

Anthony Shaw CRY Screening Manager Reporting from The CRY Centre for Sports Cardiology April saw a great deal of change occur at the CRY CSC. The most significant was the departure of Mathew Wilson at the end of March to return to academic circles, with myself taking over as the CRY CSC screening manager. We would like to take this opportunity to thank Mat for the work he performed here at the CRY CSC and for CRY. He was a great help to me and will be sorely missed. However, following Mat's departure and the increased workload at the CRY CSC, we were fortunate enough to recruit Rebecca Howes and Clare Farrell. Both have a strong interest in sport.

Rebecca Howes

Clare Farrell

Rebecca completed her degree and masters at Portsmouth University before joining us from Nuffield Proactive Health where she worked as an Exercise Physiologist.

Clare joins us from Ireland, although she completed her degree and masters at University of Wales, Bangor, before going on to work for Microsoft.

You will be pleased to hear that our Gift Aid income from the beginning of June to the end of December 2007 has increased by ÂŁ12,000 on the same period last year. After the success of last year's Bridges walk (more than ÂŁ68k gross raised) and the positive feedback received from participants, we will be repeating the event on Sunday 20 July 2008. Kathryn will once again lead the walk, which will take on a slightly different route and have different start and finish points. We hope to have a warmup and a couple of songs from Kathryn at the start. For more details please visit www.c-r-y.org.uk/bridges_ walk_2008.htm. Supporters of the event so far include Westminster City Council, St Martins Property Corporation, Chubb Insurance, Foresters and the Retired and Senior Volunteer Programme (CVS). Thank you all again for your continued fundraising efforts on behalf of CRY. 8 |

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Dr Carey Edwards

Dr John Rawlins

Dr Michael Papadakis

In addition we were joined by Dr Carey Edwards, Dr John Rawlins and Dr Michael Papadakis, our new Research Fellows under Dr Sanjay Sharma at King's College London and University Hospital Lewisham. Sports Screenings There have been exciting developments for CRY's screening programme in the world of sport. Firstly, we met with medical staff from the England women's football squad. This led to our screening their entire World Cup Squad leading up to the World Cup where they reached the semi-finals.

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REPORTS FROM THE CRY OFFICE

Olympic and world cycling champion Chris Hoy is screened in Manchester

In July, in partnership with Philips, CRY launched the Save Our Athletes campaign. The first Philips screening took place in October when we screened the GB cycling squad followed by the UK Athletes Development Squad

in December. CRY's association with rugby union and league continued. This included screening the England rugby union World Cup squad prior to leaving for France where they reached the final. After screening the England women's football team, the screening programme within football began to grow. We were asked to visit Blackburn Rovers FC to screen their first team squad, which looks likely to become a regular event. We also continued our partnership with Dr Mike Turner at the Lawn Tennis Association and screened a number of the development athletes based at the new National Tennis Centre in Roehampton. We were also asked to visit Sutton Tennis Club which is run by CRY patron Jeremy Bates. Schools screenings CRY's school screening programme continues to go from strength to strength, with our regular trips to Eton College and Millfield School continuing, as well as returning to Worcester College and Canford School. In addition we were also asked to visit Bryanston and Stowe schools for the first time. The CRY team were also asked to visit Christ the King College in Lewisham as part of an arts project with the South East London Cardiac Network. They were awarded a grant from the Wellcome Trust to raise awareness of sudden cardiac death and cardiac screening through art. Thirty-two art students from the college were Arts project at Christ the selected to take part in the project and King School were screened by CRY. The students were then divided into five groups and tasked to produce different pieces of art about the screening in the following areas: photography, textiles, painting/drawing, graphics and multi-media. The artwork was then presented at an art gallery in Mayfair, central London, before being exhibited around the country as part of a nationwide tour. Finally, in October we visited Tendring College to perform the first of our cardiac screenings as part of the Essex schools project. This initiative was set up by Caroline Gard and is hopefully the beginning of a comprehensive screening of a number of schools within the Essex area. Issue 46

CRY cardiac screening clinics CRY's cardiac screening clinics remain strong with regular bi-monthly events in Colchester where Caroline Gard again works tirelessly on behalf of CRY, and here at the CRY Centre for Sports Cardiology. We have also found that the level of interest in the clinics is beginning to rise gradually. CRY's Northern Ireland screening programme has undergone some very rapid transition since it began in late 2006. Initially clinics were held bi-monthly and alternated between mid-week and weekends. However, because of demand, midweek clinics were changed to weekends to make them more accessible, as well as being run on a monthly basis. The weekend clinics were also increased from one day to three (Friday â&#x20AC;&#x201C; Sunday) as well as doubling the number of technicians at a clinics. We now routinely see approximately 350 - 400 people over the course of a weekend. King Sturge Finally, we were approached by King Sturge, a nationwide property consultancy. Tragically, an employee based in their Leeds office passed away to a cardiac condition, which resulted in the company requesting that we screen all staff at every location around the country. In total, we screened in 14 cities around the country.

Tony Hill CRY Family Screening Manager The following family screening events have been held since my last report. In February the team were up in Preston with David and Ruth Lowe in memory of Andrew Parr. March saw us return to Redcar for Kenny and Maralyn Bowen's annual event in memory of Ian. We also held a two day screening in memory of Jane Star who sadly collapsed whilst at work at GlaxoSmithKline in Harlow. May saw us return to Darwen, Lancashire, with the Wickers/Staff families in memory of Neil and David. We also visited the Isle of Man for the first event in memory of Craig Lunt. In August we visited the Donnelly family in Kent for their event in memory of Adam. Finally, October took us off to Suffolk with the Fox family for their second event in memory of Laura. CRY also had a presence at the British Cardiovascular Society Conference in Glasgow with Ruth Lowe, and AMBEX in Harrogate with Eddie Farrow. Plenty of interest was shown at both events with delegates keen to keep track of CRY's progress.

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CRY centre of cardiac pathology

Dr Mary Sheppard Senior Lecturer/Consultant at the National Heart and Lung Institute, Royal Brompton Hospital Since acquiring a research laboratory and an office through the NHLI at the Royal Brompton Hospital in early 2007, a considerable amount of organisation, diplomacy and logistical work has gone into setting up and making the CRY Centre for Cardiac Pathology (CRYCCP) into what it has become today. With the appointment of research assistant Dr Sofia de Noronha and the purchase of all essential laboratory equipment, the CRY cardiac pathology lab has taken shape. It has now become fully functional and independent of the hospital laboratory whose staff were so kind to lend a hand in its initial stages. This independence has led to a significantly reduced turn around time for cases sent to the Centre so that I can issue my pathology report for Coroners and referring Pathologists within the substantially improved time of two weeks. The majority of these cases revealed morphologically normal hearts which would suggest a SADS (Sudden Arrhythmic Death Syndrome) death. Other cases included diagnoses of left ventricular hypertrophy, cardiomyopathies and myocarditis. Following the official launch of the CRY Centre in March 2008 to spread awareness of this unique and free 10 |

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specialist service to Coroners around the UK, I anticipate an increase in the number of cases sent to our specialist unit. I also attended the CRY Family Medical Conference Day in June where I explained the pivotal role of the pathologist in diagnosing the cause of death. I also emphasised the necessity for retaining the heart tissue for further analysis and fresh tissue also for possible genetic analysis. I lecture thoughout the country and abroad on sudden death. I presented at the CRY Inherited Cardiovascular Disease conference in October and the conference Alison chaired in Birmingham on services for the family after a sudden death at the Heart Rhythm conference. I was awarded the Stokes Medal by the Irish Cardiac Society in recognition of my work in the area of sudden death in Belfast in November 2007. I am also on the Board of the European Association of Cardiovascular Pathology and was involved in the publishing of European guidelines on the proper investigation of cardiac deaths in 2007. I particularly enjoyed meeting and discussing any issues relating to sudden young deaths with CRY supporters and bereaved families when I attended the CRY Parliamentary Reception in July and â&#x20AC;&#x2DC;Art for a Cityâ&#x20AC;&#x2122; at the National Gallery in November.

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Save our athletes

In July 2007 CRY launched the Save Our Athletes Research Project, a five year inclusive athlete cardiac research study lead by CRY, involving data from the USA and Germany. By concentrating on all elite athletes, CRY will be able to gain a broader understanding of the effects of heavy and light exercise on the heart.

Karen Pickering and Mark Foster

Launching the campaign were athletes from all over the UK including Rob Hayles, three times Olympic cycling medal holder; Karen Pickering, Britain’s most decorated female swimmer; and Mark Foster, double Commonwealth swimming champion. They were amongst the first athletes to have their hearts screened by CRY experts at the Waterfront Leisure Centre, London.

Sir Ian Botham OBE, President of the CRY Centre for Sports Cardiology, comments: “We want anyone who participates in sport to have heart screening, just as they do in Italy. The Save Our Athletes screening programme is a giant step towards that because of the empirical evidence it will provide. We must stop the terrible tragedies of young people involved in sport dying needlessly.” Professional sportspeople know that to reach peak performance they need to understand their body inside and out. For elite athletes in high profile sports, heart screening is a fundamental part of training but, due to the costs, access is not universal. Athletes in sports with lower profiles who represent our sporting future are left vulnerable to sudden death syndrome (SADS). Exercise is associated with a 10-fold increase in the incidence of heart problems, yet a simple cardiac scan followed by professional examination of the data can highlight symptoms that, if left unmanaged, can lead to sudden death in healthy young athletes and fitness enthusiasts. Statistics and facts The screening programme will be led by Professor Greg Whyte, Chairman of CRY and Professor of Applied Sport and Exercise Science at Liverpool John Moores University, working in tandem with consultant cardiologist Dr Sanjay Sharma, Director of Heart Muscle Disease at King’s College Hospital, London. In the first two years CRY will screen 1500 elite athletes using the latest cardiac imaging technology from Philips at centres across the UK, including the CRY Centre for Sports Cardiology at the Olympic Medical Institute, London. Professor Whyte comments: “The Save Our Athletes project will be world leading, enabling CRY to research the role of cardiovascular screening, allowing us to fully identify disorders capable of causing sudden cardiac death. Everyone is potentially at risk and the only accurate means of diagnosis is through expert cardiovascular assessment. The next five years will be seminal to our understanding of which people are most vulnerable to sudden death during exercise.” Since it was established in May 1995 to raise awareness of sudden death syndrome, CRY has been campaigning and lobbying to raise awareness of the condition. CRY also works to provide counselling support to bereaved families and any individuals who have been diagnosed. Alison Cox, CRY Chief Executive and Founder, was awarded an MBE in 2007 for services to healthcare pertinent to the tireless work of the charity’s team and CRY’s supporters from all over the UK. Ms Cox comments: “CRY was established with the screening of athletes for the Lawn Tennis Association (LTA). Today we work to support anyone and everyone affected by the circumstances of sudden death. The Save Our Athletes research will help us further our campaign for change and reduce the terrible roll-call of tragedy of young sudden cardiac death." The symptoms of heart conditions can be very deceptive, especially to people who have always been able to push themselves to the limit. Often people relate pains to over-exertion or a drop in power to an ‘off day’, but sometimes these are the body's warning signs of heart conditions. CRY has developed a Fitness Checklist for anyone who has worries about their heart health. You can now go to www.c-r-y.org.uk/cardiac_checklist.htm

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CRY Parliamentary Reception 2007

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CRY International Conference October 12th & 13th October 2007 Every year CRY hosts a two-day international medical conference which focuses on sudden cardiac death in the young.

Dr Domenico Corrado

This year's event was held at the Cavendish Conference Centre in London in two separate conferences over two days designed to appeal to different members of the medical profession. The conference attracted speakers and delegates from around the globe, including many of the world's leading experts on young sudden cardiac death. Sudden cardiac death in a young and apparently healthy individual or an elite athlete has devastating effects on a family, friends and the local lay community. The vast majority of deaths are due to congenital malformations of the heart or inherited structural disorders. There are currently between 8 to10 young sudden cardiac deaths per week in the UK and many of the causal disorders could be recognised during life, and sudden death prevented.

Dr Paul Thompson

Professor Bill McKenna

Dr Elijah Behr

Dr Mary Sheppard

Professor Greg Whyte

Most conditions causing sudden cardiac death in the young are rare when compared with hypertension or coronary artery disease. However, the impact of potential life years lost due to these deaths is striking. The lack of provision of adequate training in the recognition and management of these disorders results in misdiagnosis or false reassurance of a young patient with symptoms of cardiac origin. In situations where death has occurred, family members may not be offered cardiovascular evaluation because of the lack of awareness of the genetic basis. In March 2005 the UK Government launched the 8th National Service Framework chapter on cardiology to address diagnosis and management of disorders capable of causing sudden cardiac death in young individuals. However, few centres in the UK have the expertise in the diagnosis, risk stratification and treatment in this field. The CRY International Conference provided information about the conditions causing sudden death in the young as well as concise practical methods in their diagnosis, risk assessment and treatment. The practicalities and difficulties associated with screening for conditions causing sudden cardiac death in young asymptomatic individuals were discussed. Many of the speakers have national or international reputations in the field of sudden cardiac death, and have been pivotal in establishing international guidelines and management protocols. The first conference 'Sports Cardiology: From Theory to Practice' was held on Friday 12 October and focused on sudden death in the young athlete with relevance to consultant cardiologists, specialist registrars in medicine and cardiology, sports medicine physicians, general practitioners with an interest, sports physicians and sports physiologists. The speakers were (in order) Professor Greg Whyte who introduced the event, Dr Paul Thompson, Professor Keith George, Dr Sanjay Sharma, Professor William McKenna, Dr Domenico Corrado and Professor Tim Noakes. The second conference 'Diagnosis and Management of Inherited Cardiovascular Disease' took place the next day (Saturday 13 October) and focused on the causes, diagnosis and management of conditions causing sudden death in young individuals. The agenda was designed to appeal to general physicians, general practitioners, senior cardiac physiologists and cardiac nurses. Speakers were Dr Sanjay Sharma, Dr Domenico Corrado, Dr Pier Lambiase, Dr Elijah Behr, Dr Amanda Varnava, Professor William McKenna, Dr Paul Thompson, Dr Mary Sheppard and Professor Greg Whyte. The CRY International Conferences are endorsed by the British Cardiac Society and each conference is accredited with 6 CPD points.

Dr Sanjay Sharma

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www.c-r-y.org.uk/ cry_international_conference_htm

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CRY Heart of London Bridges Walk

On 7 July CRY Patron Kathryn Harries, opera singer (soprano), completed a 32 mile (51 kilometre) walk along the Thames path from Hampton Court to Tower Bridge, crossing all the Thames bridges en route. Then, on 15 July, Kathryn was joined by over 400 CRY supporters on a walk crossing 8 bridges from Westminster to Tower Bridge – a distance of approximately 8k. Commenting on these events, Kathryn Harries says: "Like many of you, I've read about fit, young people dying without warning because of an undiagnosed heart condition. As a mother of two, I've barely dared to imagine the terrible grief of these youngsters' families. I didn’t realise there was something I could do. Then I heard about CRY. This fantastically energetic charity aims to make screening for heart conditions part of every young person's life. Our children are our future.” www.c-r-y.org.uk/kathryn_harries_bridges_walk_july7.htm www.c-r-y.org.uk/kathryn_harries_bridges_walk_july15.htm

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KIDS FOR CRY Julie’s interview with Lorna Carby Echocardiographer How did you first hear about CRY? I work for the NHS, at the University Hospital Lewisham cardiology department and was approached by Dr Sanjay Sharma to provide echocardiographic support seven years ago. This was my first encounter with CRY. Soon after, there followed the sudden death of a healthy young man from heart problems at my children’s school. His family read an article in our local paper about CRY, and his death was investigated and rediagnosed as SADS. His siblings also attended my children’s school and they were screened on the strength of these findings. Why did you decide to become associated with CRY? Following my first family screening with the Fox family in Suffolk more than five years ago, I was moved by the strength of the families involved and the whole concept of screening young people to prevent sudden cardiac deaths. I have since supported research with my MSc in acute cardiology and have read many studies related to sudden cardiac death. I have looked at the data related to ethnic groups and the screening programme that is enforced in Italy. I found myself very passionate about the need to screen, not just for sportspeople, but for every child.

“The most appealing part of the CRY campaign is the positive energy from everyone involved. This energy generates focused research which will eventually answer many questions, such as why any healthy young person can die.” Could you tell me more about the achievements of the CRY team that went to the Isle of Man? There were approximately 12 members for this very large screening weekend – 250 clients were booked. We were two echocardiographers, seven ECG technicians, one cardiologist and two admin supporters in total. It was a busy, hard working and fulfilling weekend. It was very positive, not just for the family who had booked us, but for all those working. Did you attend the CRY Parliamentary Reception? I attended the Parliamentary Reception this year and was greatly moved by young individuals’ stories about how Issue 46

Lorna screening Olympic cycling silver medallist Rob Hayles MBE

CRY had helped them find cures and support for their different cardiac anomalies. I was also proud to witness how far CRY has come since the early days. I was also pleased about the many MPs who recognise the conditions associated with these young people. Our celebrity, David Walliams, spoke so eloquently about his support with CRY. Then, to top it all, MBE recognition for Alison Cox, whose hard continuous work building up this charity has been rewarded (lump in my throat from joy). What most appeals to you about CRY's campaign? The most appealing part of the CRY campaign is the positive energy from everyone involved. This energy generates focused research which will eventually answer many questions, such as why any healthy young person can die. It brings many people from different walks of life together to increase awareness and support. Medical companies are becoming more gracious and are supporting CRY by providing them with the latest Echo and ECG machines. What are your hopes for CRY in the future? My hope would be compulsory ECG screening of all young people of school age in the UK. This would be followed by echocardiograms for those at risk, to reduce the incidence of the tragic event of sudden cardiac death in an unsuspecting young person.

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KIDS FOR CRY The Kids for CRY theme is: Hospital Can you find

Nurse

Consultant

Treatment

Patient

these words? Doctor

Operation

Medicine ECG Emergency Ward Bed

Doctor Doctor Jokes Doctor, Doctor

Doctor, Doctor

I keep thinking there are two of me...

I think I'm a bridge...

One at a time, please.

What's come over you? Oh, two cars, a large truck and a coach.

Doctor, Doctor Will this ointment clear up my spots?

Doctor, Doctor

I never make rash promises!

I think I'm a cat...

How long has this been going on?

Doctor, Doctor

Oh, since I was a kitten I supposeâ&#x20AC;Ś

I've broke my arm in two places...

Doctor, Doctor

Well, I wouldn't go back there again!

I think I'm a dog...

Doctor, Doctor I was involved in accidents with three trains last week. What's wrong with me?

Looks like Repetitive Train Injury.

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How long have you thought that? Ever since I was a puppy.

I see. Well, you'd better sit on the couch... I'm not allowed on the couch.

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KIDS FOR CRY FUNDRAISING In Memory of Hannah Turberville A donation has been received in memory of Hannah from The Teddy Bear’s Club (Mother & Toddler Group) who have sent in a cheque for £200. z The Harpenden & Redbourn Girlguiding donated £100 from their St George’s Day service. z Mrs Katy Turberville forwarded a donation for £150. “This is the money from the collection at the St George’s Day Service for Scouts, Cubs and Explorer Scouts of the Harpenden District. I am an Akela of a cub pack in Harpenden and we are delighted they chose to donate the collection to CRY.” Jan Yardley, Harpenden & Wheathampsted Scout Council z “Another donation for Hannah’s Memorial Fund! £170 was from Hannah’s uncle’s wedding, which took place on 31 March. Hannah was to have been a bridesmaid and her twin sister Lucy did a fantastic job along with her cousin and the bride’s sister. There was a sweepstake on where the honeymoon would be and it was donated to CRY. £130 was a donation from Uncle Jeremy and Aunty Caroline (the newlyweds) to make the total donation to £300.” Katy Turberville

Croydon High School and Whitgift School

“On 26 June, 16 students from Croydon High School (girls) and Whitgift School (boys) played a charity netball match against each other to raise funds for CRY (the boys’ chosen charity) and SPARKS (the girls’ chosen charity). The event was organised by myself (Katie Lister) and Dan Mullarkey from Whitgift. It was an amusing day with lots of pre-match banter along with some on the court. The highlight was when the boys stripped off their tracksuits to reveal gym skirts and, in the case of one boy, fishnet tights!! The boys put up a good attempt to beat us girls, however, it wasn’t good enough! The girls won (only just) 12-7. I am hoping to organise the same event next year and will try and beat the amount raised!” Katie Lister Katie Lister sent in a cheque for £209 for CRY.

Claysmore School “Following a meeting of the grant-making committee we are delighted to enclose a cheque for £200 for your work researching into the causes and possible cures for Sudden Death Syndrome. All our donations are made from money raised over the course of the year by our pupils in a variety of ways: a sixth form Ball, a 24 hour event, non-uniform days, chapel collections and various trading enterprises around the school and local community.” Richard Carr, Megan Rose and Clayesmore Charity Committee

Blossom House School Once again we have received a donation from the Blossom House School. The amount received was £300.

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KIDS FOR CRY FUNDRAISING In Memory of Kallista Heavey “Kallista was the much-loved daughter of a member of staff and her death from severe myocarditis in September 2006, when she was only eight months old, was very sudden and raised concern from our parents, children and staff. The Heavey family have also become involved with your charity and we have pleasure in enclosing a cheque for £2,000 as money raised through a sponsored walk instead of our usual sports day event.” A M Warren, Headteacher, Mill Hill Primary School

In Memory of Sebastian English “My son Sam Christophersen, 11 years old, is a pupil at The Dragon, Oxford and asked for help in raising money and awareness for CRY. Sam is a cousin of the English/Hunter family and was very saddened by Sebastian’s death. The sum donated by The Dragon came from a collection held during the performances of ‘Hiawatha’ last term.” Rachel Christophersen forwarded a cheque for £304.19

Kings College

Brighouse Juniors AFC

“Please find enclosed our cheque for £388.79 for you to add to your funds. This amount has been collected during the year by our students and staff at Kings College by holding a mufti-day – it was the students choice to donate to your charity.” Diana Pinto

“We are a local junior football club, and at our annual end of season open weekend we support a charity by putting out the collection boxes to give something back to another charity that relies on supporter-led fundraising activities.” Nicola Barker sent in a donation of £177.17.

In Memory of Cameron Strathie

St Wilfred’s COE High School

Cameron-Anne Oliver raised £170 in memory of her classmate, Cameron Strathie who died, aged six, of an undetected heart condition. “As previously advised, Cameron-Anne was picked to take part in our local Gala Day which involved taking part in a ceremony. After speaking with Cameron Strathie’s family, Cameron-Anne placed a wishing well outside our home for donations.” Hazel Oliver

Biddock Sports College Caron Galley has forwarded a donation of £1,521.51. This money was raised during Biddick Sports College's non-uniform days.

In Memory of Charlotte Wright

The pupils of St Wilfrid’s COE High School and Technology College raised £174.21 for CRY.

In Memory of Cecilia Barriga Donations totalling £1730 were raised by Katherine Lambeth who is just 16 years of age and a student at the Coloma School in Croydon where Cecilia attended. In July Katherine held a concert at her church for CRY, which was a huge success. The concert was of a very high standard consisting of a range of chamber music and solos by seven young people aged from nine to 16 years old.

Amy Mead has donated £38 in memory of her friend Charlotte.

In Memory of Suzanne Bennett The North Muskham under 9’s football team have sent in a donation of £5 in memory of Suzanne.

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In Memory of Nathan Butler We have rreceived a cheque for £52.91 from Rachel Edwards on behalf of St Joseph’s Preparatory School. “This relates to money collected at our recent prizegiving evening. We would like this money to be attributed to the Nathan Butler Memorial Fund.”

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Issue 46

KIDS FOR CRY FUNDRAISING In Memory of Charlie Morettes “On 18 July, a local representative from Cardiac Risk in the Young visited Sutton-at-Hone C of E Primary School to receive a cheque for £2,000, as a result of their recent fundraising efforts in memory of Charlie Morettes, who they tragically lost on 16 May this year. CRY is the charity that is being supported by Charlie’s family, so that research can be made into cardiac problems in young people and children. Many of the children involved were in Charlie’s class. His class teacher, Mrs Randall, also raised £400 by being sponsored to dance on the stage at the Stag Theatre in Sevenoaks. The children had performed in a dance show at the Stag Theatre and a choral festival at Woodville Halls, Gravesend. Retiring collections were made, and the children and staff were overwhelmed by the generosity of the public at these performances. Julie Donnelly, a representative from CRY, very kindly visited the school to receive the cheque, and thanked the school for their efforts in raising this money. The school is very grateful for the support from CRY, and they hope that CRY will be their adopted charity next academic year so that they can raise more money and awareness for the charity, whilst remembering a very dear little boy, Charlie.” z Allison Spalding has forwarded cheques totalling £2,712.50 which were donated by various people and organisations in memory of Charlie. z Kerrie Brandon sent in a donation of £315. “I am a member of staff who has been raising money for your charity by doing a Mrs Kirsty Randall (Dance Teacher), CRY Representative Julie Donnelly and School Choir Teacher Mrs Rachel Walters. Right: the School Choir raffle for your worthy cause. Unfortunately my family has been touched by the loss of a young boy ‘Charlie’ who attended my daughter’s school in Sutton-at-Hone. I know you need lots more funds but I hope this little bit helps. Keep up the good work.”

8 Bridges of London by Lewis Scott, aged 9 It all started on Sunday 15 July 2007. I was determined to do it! When we walked past the Houses of Parliament, Mum said we were close to where we had to meet, so we kept on walking. Finally, we reached the park where we had to start. After 10 minutes of waiting we were off! Grandad and I sped off leaving my Nan, Mum and Dad behind. We reached the first bridge after about 5 to 10 minutes. When we crossed we looked at our map – 7 more bridges to go. To get to the next bridge took 7 to 15 minutes, and so on, until we were in sight of London Bridge, the 7th bridge. We were so encouraged by seeing London Bridge we started jogging, then we slowed down because there were drinks, and then we started to jog again. We slowed down again to listen to a man who was singing along the bank of the river before moving on again. When we set foot on Tower Bridge my mind jumped, I started running for the end and crossed – yippee! I got a certificate declaring I had completed the walk. My family and I managed to raise just over £2,000 and, all in all, it was a fantastic day and I deserved the sleep I had when I got home!

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running for cry

In Memory of Craig Johansen

In Memory of Leigh Graham

Tom Naylor took part in the Great North Run and raised a further £480 in memory of his close friend (and brotherin-law) Craig Johansen.

Following her run in the Glasgow Women’s 10 kilometre race, Lucy Graham donated £260 in memory of her cousin Leigh.

In Memory of Richard Bethell Kerry and Phil Bethell took part in the Frinton and Walton Half Marathon and raised £100 in memory of Richard.

In Memory of Christopher Haw Suzanne Forster took part in the Great Manchester Run, and raised £350 in memory of Christopher.

In Memory of Jonathan Leigh “I am the sister of Jonathan Leigh, who died suddenly on 17 September 2005. At the end of April, me, my youngest sister Rebecca, 15, my cousin (Mark, 21) and his girlfriend (Louise, 21) did the Leeds Met Carnegie Run in memory of Jonny and in order to raise money for your charity. I have enclosed a cheque for £205 from the sponsorship money Rebecca and I raised.” Nicola Leigh z Mark Thompson also sent in £119 for the same event.

In Memory of Philip Jefferies

In Memory of Laura Copping

Andrew Barnes, who competed in the BUPA Great Capital Run, donated £315 in memory of his brother-in-law Philip Jefferies z Mr John Mayhew donated £300, which was raised on completing the London Marathon in April.

£250 sent in by Lyn Copping z £30 sent in from Councillor William Ashley z Jessica Weeks has donated £784 from sponsorship for running in the London Marathon.

Belfast City Marathon On Monday, 7 May 2007 two relay teams from the Irish Football Association, in conjunction with CRY, ran in the Belfast City Marathon. The runners were Glenda Dines, Darren Veighey, Angela McKibbin, Lerina Bright, Paul McMeekin, Jonathan McMeekin, Colleen Macauley, Paul McCrink, Valerie Hamilton and Janet Elliott. On behalf of the IFA, the International Team Manager, Nigel Worthington, was delighted to hand over the money raised, in the sum of £2,100 and to wish CRY continued success in their research, screening and purchasing of the equipment necessary in meeting their requirements.

Lexus Croydon 10k in memory of Cecilia Barriga On 21 October 2007 Philippa Stanyard and top Scottish cricketer Neil McCallum – who scored 60 against Pakistan in the summer – sportingly donned heart suits to publicise CRY and to help raise funds in memory of Croydon Harrier Cecilia Barriga. Down from Edinburgh for the weekend, they volunteered to run with just one day to go. Neil 'batted along' to finish 164th in 47 minutes 45 seconds, with schoolteacher Philippa finishing 196th in 49 minutes and 20 seconds. British 400m runner Martyn Rooney, Croydon Harriers' very own guest of honour at the Lexus Croydon 10k, was also present at the event, and congratulated the two "Brave-hearts" at the end of the race. Mike Fleet, Croydon Harriers 20 |

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Philippa Stanyard, Martin Rooney and Neil McCallum

Issue 46

Our Fundraisers

In Memory of Phillip Holland

In Memory of Tony Mead

Barbara Holland has sent in a donation for £1,000 to mark Phil’s recent birthday on 27 March.

“I have pleasure in enclosing a cheque for £1,200 for your worthwhile charity. As you will be aware the money was raised following the Tony Mead Memorial Cup Rugby Match held at Newquay Rugby Football Club on 27 April 2007.” Rob Parish

In Memory of Katrina Brown “Reckitt Benckiser is very proud to support CRY and the Katrina Brown Memorial Fund. As part of our Community programme, we regularly support our employees that have taken part in a fundraising event, by match funding their efforts up to £500. However, when Caroline Bottomley contacted me regarding the tragic death of her close friend, Katrina Brown, and the amazing fundraising programme that she and the family and friends of Katrina were organising in her memory – we felt very strongly that we should do more to reward these efforts. I am therefore enclosing a cheque for £5,000.” Sandra Hennessy – Corporate Communications Officer

In Memory of Kasia Ber John Steel challenged himself in a sponsored swim by completing 600 metres after weeks of training at the gym and pool. His previous best was 175 metres so he was very pleased despite his aches and pains. A minute’s silence was held on the day in memory of Kasia. John hoped that she would bring him luck and that he would do her proud. The amount raised was £160, which he says will go in memory of a good person. John would like to thank many people including the staff at Peterlee Leisure Centre for getting him fit for the event, his family and friends for their support and for cheering him on, and also to his girlfriend Nicola who kept him motivated. Kasia’s parents would like to say “Thank you” to John for doing this in memory of their daughter.

In Memory of Kevin Wilson Knowsley School of Dance held their Annual Show in June. They raised £606 through raffles held on the night.

In Memory of Dominic O’Loughlin

z The Horden Village community have raised £515 in memory of Kasia.

Francesca O’Loughlin has forwarded donations totalling £350 in memory of Dominic.

In Memory of Dr Leon Walkden Mrs J Walkden has forwarded several donations to the value of £1232.17 in memory of her husband Dr Leon Walkden.

In Memory of Tyler Bing Leah Rowland sent in a donation for £2,000 in memory of Tyler Bing. She has also sent in a further donation for £500 from the Royal Bank of Scotland Group which recognises her voluntary work for CRY.

In Memory of Ian Bowen An all night disco was held by Alan Moylan to celebrate his 30th birthday in memory of his friend Ian. He raised £460.

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The Unipres Golf Society had a charity golf competition at Maften Hall in Northumberland in aid of CRY and the Kasia Ber Memorial Fund. They raised £305 and all of the lads had a great day out. The competition was won by Mark Canning and the trophy was presented by the Chairman, Jason Cameron. “Thank-you to all the fantastic people who took part and well done.’’ John, Diane and Christopher Ber

In Memory of Luke Worgan "As part of our last year at Olchfa School we are challenged to raised funds for the charities of our choice. We decided to raise funds for CRY in memory of Luke Worgan who died unexpectedly, shortly after finishing school. As we are an 'arty' lot we decided to hold an exhibition of our work and charge an entrance fee and also to sell the works and donate the whole price to CRY. The evening was held on 5 February. We are happy to say that we have raised £282 in total." Tom Lucas, Kieran Ahmed and James Webborn.

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Our Fundraisers

In Memory of Cameron Strathie

In Memory of Cecilia Barriga The Mulberry Bush Charity Ball held last June raised £750. z “Sponsorship money for the Women’s Hydro Active Challenge raised £121” Jane Jones, Treasurer MF z “My daughter Shannon is a pupil at Coloma Convent Girls’ School and 1½ years ago she became ill and we found that she had a non-malignant tumour on her ovary. It had twisted around her fallopian tube so she had to have one side removed. St George’s and Mayday were fantastic so we thought it would be nice to raise some money towards a charity. As this was an unusual case Shannon suggested that the money we raised be sent to your charity. This summer we had a garden party and we managed to raise £651. This is to go towards the memorial fund for Cecilia Barriga.” Catherine Males

In Memory of Matthew Glan Hughes We have received donations of £850.60 in lieu of floral tributes for the late Matthew Glan Hughes.

“Please find enclosed cheques for CRY which are funds raised recently by all our family and friends in memory of our son and brother Cameron. We lost Cameron on 7 January 2006, aged 6 years, very suddenly. He has since been diagnosed as having had ARVC. We wanted to raise money and awareness for CRY after you were all such a help to us, and indeed still are. £1,230 was raised after our friend and neighbour Alan MacKinnon ran the Glasgow half marathon. £2,530 was raised in January after a work colleague of my husband’s offered to get a group he runs to do a charity spiritual and clairvoyance night. I work for HBOS and due to their charity work they fund match up to £500, so taking this into account the total raised from these two events is £4,410. Nothing will bring our wee lad back but raising money for CRY in his name has helped us all focus on something and we will be planning something for next year.” John, Deborah and Leah Strathie

In Memory of Adam Donnelly “The Kent Ravens had a season of firsts during 2007, not just the opening of Princes Park Stadium or playing in the Conference premier in front of a packed crowd. The Raven’s own Vicki Bacon and the Donnelly family represented the club to donate £1,000 to CRY, who kindly send Phil and Robert Eastty to collect the cheque. The club chairman commented “Finally it’s good to be able to give something to such a good charity. We’ve always tried to raise a little bit of money to help, but this shows how far we’ve come when a club like ours can donate this kind of money and the hope is that it’ll help raise the knowledge about sudden death syndrome in the young.” Phil Eastty from CRY said he enjoyed the great occasion at the new stadium. Thanks also to the Ravens for their welcome and making an occasion of donating the money. With the 2007 season now over the Ravens are already building for 2008, with the search for players and coaches ongoing for all their teams and back room staff. If you’re interested in joining the Kent Ravens please see our web site at www.kentravens.co.uk and hopefully we’ll see you at Princes park Stadium soon.” Alan Bacon, Chairperson z Through donations and selling merchandise at a recent screening event, Julie Donelly raised £367.36.

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In Memory of ryan darby John and Barbara Darby sent in a donation of £285. This represents donations from the CRY collection boxes in memory of their son Ryan. “On 10 June my family and I did a 12-mile walk around Rutland Water. The reason we wanted to raise money for CRY is because in September 2006 Ryan Darby, aged 27, unexpectedly passed away due to cardiac arrest and we wanted to do a walk in memory of him, also to raise awareness in our area as it isn’t a commonly known illness in our community. We started our walk at 9.00am. Fortunately it was a very cool day and the weather stayed fine the whole walk, which was a plus. After about eight miles the walking started to take its toll on us all, but we knew we just had to keep going. Although it was such a long way to walk we all still really enjoyed ourselves and each other’s company, all in all it was a very fun experience.

z John and Barbara Darby donated £9,200 in memory of Ryan. They raised the money by holding a Charity Night at the Metrogas Sports Association in June. Lots of donations as raffle prizes helped to achieve this amount. CRY Representative Rob Thorne was delighted to represent us and had a very enjoyable evening.

After all sponsorship money was collected, altogether we raised £392.42 which we are extremely happy with, and proud. The walk was definitely worth doing.” Amanda Fereday, Julie Feely and Lyn Fereday

z Sisters Leighann and Claire Acuta took part in a Tandem Skydive in memory of Ryan and raised a total of £710 for CRY. z Barbara Darby sent in a donation for £259.15. This money came from collection boxes at Steads Shoe Repairs, Bexleyheath, Bromley Park Residents and Beckenham Town Football Club.

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In Memory of Sebastian English

“When Mark Davies, a friend of mine for over 30 years, suggested a bike ride from John O' Groats to Lands End, I told him he was insane and thought I had finally rebuffed his numerous and continuous suggestions to do something special for CRY. Two weeks later, another phone call, another suggestion – the Three Peaks Challenge – he had caught me at a weak moment and I rather reluctantly said 'OK then', not really knowing what I had agreed to do. A week later, five team captains had been secured and approximately fifty people mustered, all to climb the three highest mountains in Great Britain, within 24 hours, in June. He isn't called Mark 'consider it done' Davies for

nothing…but why the urgency and the remarkable and immediate response? Thirteen years ago, I married Stephanie English, the widow of a great friend of mine, Howard English, who had collapsed and died at Esher Rugby club in October 1993. Howie's death was diagnosed as Floppy Mitral Valve Disease, a heart condition that was not hereditary and Steph was assured that Howard's death was a tragic one off. Our wedding was a happy occasion and the majority of my friends knew Howie well and this was the perfect ending to a ghastly period. Steph was happy again and Howie and Steph's children, Sebastian (5), Sabrina (3), and Titus (1) had a new daddy. It was all wonderful, and a year later Marcus arrived and two years after that the family was made complete with the arrival of Rory.

instantly. The diagnosis of ARVC was too late for our darling Bas. The effect on Steph and all of us was completely devastating and has changed our lives forever. However, we were not alone, and it was clear that our fabulous friends and family had also been living our nightmare with us since Sebastian's tragic death. Mark Davies has said that when organising the Three Peaks Challenge, his role was easy. It only took a phone call to key friends from various parts of my life: Home in Cheshire, School at Rugby, University at Loughborough, Work in Newcastle and London, and a team of Mark's friends from Bristol; the recruitment job was done. It was as though our friends had been waiting for an opportunity to throw themselves into something major, to cap their anger and disbelief that Sebastian could have been allowed to die and that Howie's death had been misdiagnosed. They also wanted to continue to support us in raising the profile and activities of CRY and promote Steph's passion of trying to help families avoid multiple deaths after suffering a tragic loss by ensuring an accurate diagnosis and pathology, and insisting on a proper system to advise these families and to get all vulnerable members checked and sorted. And, wow, did they do just that! What is so remarkable about the response is that the majority of those taking part in the Three Peaks

Ten years later, however, history was to repeat itself in the most unbelievable and cruel way. Sebastian was passionate about playing rugby and was a dynamic fullback. He was super-fit and fast. On a Sunday morning in February 2004, Sebastian inexplicably collapsed whilst retrieving a ball that had rolled out of play and died 24 |

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in memory of sebastian english

As a result, the fantastic work of CRY is now understood by many more people throughout the country and over £100,000 has been raised for CRY. Although this is phenomenal, the lasting memory for Steph and I is the massive and continued love and support of all our friends who participated, donated and who refuse to let the memory of Howie and Bas fade away. We can't thank them enough”. Rupert Hunter (Peak Earlys) z Sam Powell sent in a donation of £1,710.

Challenge had to train and train hard. Preparing for the challenge involved many hours of walking at weekends away from their own families. This was not just one weekend of madness, but an awesome commitment by everyone involved. And so in the Spring, for the Amberley Trotters, Lufbra Students, Northern Lights, Peak Earlys and Rugby Ramblers, the training began. For some, a gentle walk to the pub on a Sunday, or discovering beautiful countryside on their doorstep. For others, a proper team training schedule or 'I'll leave it until next weekend'. However, as June approached, (a few hundred pounds lighter thanks to the local Blacks store) and as the huge sponsorship monies began to roll in, we all began to realise we were committed and about to embark on something very special and an experience we would never forget. For me, many memories: pre-match nerves at Glasgow Airport and at the base of Ben Nevis, the beauty of the summit, running the last kilometre, the hopeless attempt to get some sleep on the minibus, the one Snow Patrol CD, the dreadful satellite system getting us lost in a Carlisle car park at 2.30am, the horror of the Steps on Scafell, the agony of the knees, the magic of Gemma (our physio), the elation on Snowdon, how delicious fish, chips and mushy peas are, and the ecstasy of sleep. What a tribute to Howie and Sebastian. It is remarkable how one man's determination to do something, five team captains' unflagging encouragement and fifty people's commitment, can achieve so much. Issue 46

z “On 31 May, a charity event was held at Plug ‘N Play in Reading. The line up consisted of three bands: Enjoy Destroy, WinterKids, and Thorn Stone and The Barrow Gang, with DJ’s after. Everyone enjoyed themselves and £642.87 was raised”. z Mr E Cameron Watt has sent in a donation of £300. This money was raised at the Bath Half Marathon in memory of Sebastian. z By running in the Bath half marathon in March, Camilla Rowland raised £250, which she donated to CRY. z “Please find attached the final cheques for the Tandem Skydive that Ben Rubio and Jamie East did on behalf of CRY.” Together with the Just Giving website they raised £1,913.33. z A donation of £20,743 was raised from the annual Sporting Dinner in memory of Sebastian. CRY Patron Sir Clive Woodward (left) was the guest speaker at the event, held on 21 March 2007. z CRY Patron Simon Halliday (left) has forwarded donations amounting to £1,950 from the 2007 Bath Half Marathon.

z “I enclose cheques totalling £735 as donations to the Sebastian English Memorial Fund. The money was raised by Tarquin Henderson, Guy Duckworth, Rory Holgate, Steve Bates and Rory St Johnston through a gig they played in June. We hope the money will help in some small way with the fantastic work of CRY.” Clare Henderson z Mrs Elaine English has sent in a donation of £150 from the sale of CRY wristbands. z A donation of £600 was received from Mrs Jo Bird on behalf of the Cardiff Inner Wheel. The amount was raised at a quiz evening.

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Our Fundraisers in Northern Ireland

In Memory of Aaron Lundy As a fundraiser for CRY in memory of Aaron Lundy (www.aaronlundy.com) a team of six cyclists took part in ‘Lap The Lough’. This is a unique cycle event, which is in its second year and entails covering a lap of Lough Neagh, which is slap bang in the middle of Northern Ireland, in a day! The team, consisting of six people – Martin & Susan Duffy, Sean McKay, Michael Sayers, Daniel & Claire Duffy – were part of a large contingent of 500+ riders who set out to tackle the route. With the weather set fair we took off at 9am to tackle the 95 mile route. Very quickly it became obvious that we were surrounded by seasoned cyclists and indeed after the first ½ mile we were left behind by the main bunch! This did not matter to us as we quickly settled into a good rhythm covering an average of 15 miles per hour.

The first of the water stops 33 miles into the cycle provided a good opportunity for us to tweak the bikes slightly and take on some much needed ‘power’ snacks! Then it was back on the bikes with the lure of lunch 25 miles up the road providing all the encouragement we needed. At this point no-one was suffering and a bonus was that no-one had encountered any technical problems, including punctures! The lunch break was much appreciated – who would have thought that a sandwich and a cup of tea would provide so much satisfaction. Not so nice was the first 20 minutes back in the saddle after lunch! The fine weather continued into the afternoon and as we gradually circumnavigated the Lough our thoughts turned to the finish and if anyone would be there to see us! As we neared the finish at 5.10pm spirits were high and we were pleased at how well everyone had coped. When we arrived we were not disappointed as the organisers were still present and provided us with a cup of tea and some chocolate biscuits! What was even more heartening was being told we were not the last to finish! Over the coming weeks the sponsor money was to flood in and a grand total of £2,515 was raised for CRY. When I asked if they would do it all again next year I was to receive a muted response – although somehow I think I may be able to persuade them. There is no truth in the rumour that there are currently six bikes for sale on ebay! Best wishes to all the dedicated staff, patrons and fundraisers at CRY. You carry out phenomenal work! 26 |

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Our Fundraisers in Northern Ireland

In Memory of Michelle Sinclair “Please find enclosed £1,315 in memory of our daughter Michelle who died suddenly at Northumbria University in Newcastle Upon Tyne. This money was raised in lieu of flowers after a beautiful ‘Celebration Service’ for Michelle in her home church in Northern Ireland. Our family are totally devastated by this great loss in our lives but we do hope this money will help your charity in some small way.” Mrs K Sinclair, Michelle’s mum

In Memory of Jamie Gault Margaret Gault has forwarded donations totalling £715. £513 was raised at the North Antrim District 10 Girls Brigade Annual District Parade, held in April. z A donation of £1000 was received from Bombardier Shorts Employees Charities Society. z The Bombardier Aerospace (N.I.Foundation) also donated £500. z An amount of £3000 was donated by Newtown Abbey Borough Council, representing funds raised during Mayor Lyn Frazer’s year in office.

In Memory of Nicholas Collins Brenda Collins has forwarded a donation for £120 from the teams of Lisburn Basketball Club and Bangor Basketball Club in the final of the annual competition for the Nicholas Collins Memorial Trophy (Lisburn won, Bangor were second). Nicholas was a keen member of the Lisburn Club when he died in November 1998, aged 16, and the Club established the Trophy Tournament after that. This is the first year that it has been associated with any charity and they wish that the money go to the CRY Northern Ireland Fund.

In Memory of John McCall “On behalf of Lisburn RFC Mini Rugby Section, I would like you to accept the attached donation which we trust will be put to good use at CRY’s screening clinic at the University of Ulster, Jordanstown. We raised the money at our recent annual Mini Rugby prize giving ceremony.” Geoffrey Reid has forwarded a donation of £250.

In Memory of Leann McBurney We have received a donation of £515, in lieu of floral tributes, in memory of Leann McBurney.

z John Richardson, Nikki Glynn, Gerry Malone, Niall McCaffery, Daniel Whitefield and Mark Graham ran the Belfast City Marathon. The amount raised was £460. They all had an enjoyable day although a very wet one. z CRY Patron Mark Carruthers (left) has sent in a donation of £600 for the Northern Ireland Fund. z The On the Move Club of the 1st Presbyterian Church, Ballymena, has donated £370.

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Our Fundraisers

In Memory of Andrew Parr “Please find enclosed two cheques totalling £1,156.80 (in memory of Andrew Parr) raised by Morag Smith (the mother of Andrew’s friend Phil) and her partner Jim at a charity evening held at the Grasshoppers Rugby Club Preston. The entertainment included a comedian/singer, a magician and DJ. “A good time was had by all!” Ruth Lowe Ruth also sent in cheques totalling £160. This money was raised through a ‘Tale of the Seas’ quiz. z A donation of £254 was received from Steve Rybowski and Rick Dolby for completing the Run Preston 5k, and Ray Warbrick for completing the 10k run. z A donation of £1,050 was received from the Barton Ladies Choir who held a musical evening. This photo (right) shows Fay Percival the choir conductor handing the cheque to Ruth Lowe. z £170 was sent in by Irene Burwin and Pam Hyde who have been friends for over 30 years, and have both recently celebrated their 60th ‘coming of age’ birthdays. In between some very heavy showers, they did manage to run the Bowl & Buffet Knockout Pairs Competition, which was won by Carole Bradley and Irene. Despite the weather, they said, “they had lots of fun and really did bowl in all that rain”. The money was raised by donations and a raffle.

In Memory of Lee Philip Stables

z Mary Fletcher competed in the Manchester 10k Run and raised £666.

Sharen Stables sent in a donation of £248.45. This was collected in memory of her friend, Sarah’s mum, who died recently.

In Memory of Stevie Wiggins The Preston Grasshoppers RFC raised £400 at their Summer Ball Raffle in memory of Stevie Wiggins.

The money was raised at her funeral service.

In Memory of Andrew Gard

“The majority of the money has been raised throughout our annual family fun day which is held each year to remember Stevie and help raise awareness for CRY.”

Clacton Hockey Club held a fundraising day to mark the 10th anniversary of Andrew’s death and raised £500.

z Simon Mulholland sent in donations amounting to £1,025.

In Memory of Ian Merchant Barbara and Dennis Merchant have sent in a donation of £100 from their charity box.

In Memory of Michael Looker Vera Looker has sent in donations totalling £144.09 from the CRY collection boxes.

In Memory of Carl Wiggins We have received a donation of £1497.63 in memory of Carl Wiggins. This is in lieu of floral tributes.

In Memory of Graham Button “Please find enclosed a cheque for £100 donated to CRY in memory of Graham Button by BAA Stansted Airport. This was kindly forwarded to Hollie Button, Graham’s sister, who works for the airport” Mrs Alison Button 28 |

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In Memory of Kieran Hyatt Marilyn Davies sent in a donation of £639. This money was raised at her husband’s 60th birthday party in memory of Kieran Hyatt.

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Our Fundraisers

In Memory of Hannah Turberville Paul Russell sent in a donation of £500, which he raised when taking part in the London Marathon. There was also a matched giving donation of £500 from the Cooper Gay Charitable Trust, bringing the total to £1,000. z Arthur J Gallagher (UK) Ltd. have sent in a cheque for £500.

In Memory of Amy Williams “Ben Williams, a supporter of CRY, gives slide shows of the canals and waterways, also ‘Across Canada by train’ and other trips, including America. Any CRY supporters who are members of women’s groups, probus or other groups looking for speakers can contact Ben on 01204 305 808. All proceeds go to CRY. Ben will travel some 25 miles from Bolton and does day time or evening shows.” Ben Williams (Amy’s grandfather) has donated £125 from his talks.

In Memory of Jeremy Cole “I have pleasure in enclosing a cheque for £189 from the proceeds of a fundraising event held on 24 April by the Southampton Law Society to be allocated to the ‘Jeremy Cole Memorial Fund’ within CRY. The event was organised by the University Law Society who chose CRY as the charity to support following a suggestion from myself as the 3rd year law representative at Southampton University.” Amy Cole.

In Memory of Nadine Rhian Fry Coleen Fry has forwarded a donation of £200 from Mr K Jolly, Priory Developments Limited. This was to support Adam and Richard’s Nurburg Racing Circuit trip on 28 May to raise awareness and funds for CRY. z A further donation of £217 has been received for this event.

In Memory of Nathan Jennings “We recently lost an aunt and we asked for donations for CRY instead of flowers.” Mrs Jenny Jennings sent in a donation of £160.

In Memory of Oliver Hewitt “On 27 November 2006, 160 people gathered in a small pub in Aldridge to raise money for CRY in memory of their special friend, Oliver Hewitt. Oli tragically passed away in March 2006 of Myocarditis. His death left us devastated. He was a fit, healthy, 23 year-old with a love of football and the gym. Oli’s family found CRY and I know that they have been a great source of comfort and knowledge to them. We decided to raise money to help raise awareness and prevent families suffering the same loss. The charity night was a great success filled with much love and laughter. We included a quiz and raffle on the night and the generosity of those there overwhelmed us. But we also wanted to do something extra special, to pay tribute to Oliver’s love of fun. Twelve of his closest friends agreed to take part in a ‘naked’ boy calendar called ‘Hunks of the Hill’ in tribute to the place Oliver lived. We couldn’t believe the support and response we had – we actually turned people away! We sold 200 calendars and got an article in the local newspaper. We are still grieving for the loss of such a special man, but we hope that by helping others by supporting CRY we will pay a fitting tribute to Oliver’s life.” Amy Groves. A donation of £2,200 was sent in. 29

Our Fundraisers

In Memory of Graeme Blenkinsop A charity football match in the memory of a beloved son, brother, boyfriend, grandson, nephew and friend (Graeme Blenkinsop) was held to raise money for CRY and St Marys Hospital Breast Care Trust Fund. Both charities are very dear and important to the family and friends of Graeme. Graeme was a keen sportsman and played football from an early age. Some teams include Primary, Middle and High Schools along with Isle of Wight Youth, East Cowes Youth, Gurnard Youth and GKN Senior Team. Along with football he also enjoyed golf, cricket, badminton and skiing. The match was between GKN Westlands FC (a local East Cowes team) and friends of Graeme. It was held at the GKN football ground, on an extremely hot Sunday afternoon. Money was kindly and generously donated from donations, raffle tickets, on the spot fines from the referee, Brian Hayward (well, the players can't help it if they looked untidy and missed goals), snack sales at the ground and at the BBQ venue of the Victoria Tavern in East Cowes. The game ended in a four-all draw and the teams enjoyed a well deserved cold beer after the match. Graeme died in his sleep on 4 August 2006 of an unexpected heart attack. All of his family and friends knew him as a gentle giant who was fun loving and enjoyed the odd beer and night out! Graeme had just obtained a 2:1 degree at Bournemouth University in accounting and finance and was looking forward to a well-paid career in this field. He is missed and loved very much and always will be. The total money raised was an amazing £1,910, which was split between the two charities donating to each £955. We would like to thank all those who organised, played, donated and came to the football match and next year we would like that number to increase. Mrs Jan Blenkinsop, in memory of Graeme Blenkinsop, born 18th March 1985

In Memory of Alex Buckler “Please find enclosed cheques for £635, being the sum raised from the classical guitar concert in memory of Alex. Nathan, from New Zealand, was working with us when our lives changed forever and has always been a terrific support. Recently he has been studying for a Trinity Classical Guitar Performance exam which he passed with distinction. Before leaving to go home he wanted to raise money for CRY and organised two concerts, one at Bruton and the other in Cargreen, Cornwall. All those attending enjoyed the evening enormously and once again our family is indebted to Nathan for his support to our adopted charity for Alex.” Rosalind Buckler z Charles and Rosalind Buckler have sent in a donation of £178. Of this, £78 was raised at the Archery Shoot held on their farm and £100 from the T-shirts, which were printed for Alex’s annual Hockey March. “We had a great reunion with over 30 of his school friends and Kings Bruton hosted it once again.” z Hilary Hackwell Atkins took part in a Tandem Skydive and raised £884 for CRY. z By completing a Tandem Skydive, Gavin Francis raised £155. 30 |

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Our Fundraisers

In Memory of Martyn Luckett “This money was raised early November last year from a charity lingerie fashion show in memory of Martyn. Mrs Siti Sweeny of Lacy Connections spent four months rehearsing routines with ten young ladies to ensure that Martyn would have been proud and they did a fantastic job. The event raised £2,024.50. Over 300 people attended. There was a tribute song for Martyn played by my boyfriend, Andrew Henderson (guitar) and Claire Elvins (vocals) who beautifully played ‘Time of your life’ by Green Day. I gave a presentation on the work of CRY and the reasons behind my involvement. Then there was an amazing fashion show of all the latest fashions in the lingerie department. Both the men and women enjoyed themselves tremendously whilst raising money for CRY.

Lots of friends of Martyn’s attended in tribute and friends of the family. It was brilliant because we made so many people aware of CRY and the work you do.” Charlotte Luckett

In Memory of James Kelly John Bonner has donated £831.50 in memory of James Kelly, a pupil of St Patrick’s Primary School, which his children attend.

He raised the money by cycling from Kilsyth near Glasgow to the West Coast of Donegal in Ireland – a total of 230 miles – with his brother Con Bonner and brother-in-law Billy McDonald. John’s cousin Hugh Bonner joined them on the last day. They enjoyed some glorious sunshine and hospitality along the way. The event took place from the 4 to 7 April. James said “This was a great trip, in memory of James, who never made a trip to Ireland, a place his parents said he would love to have seen.”

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In Memory of Gregory Highwood-Mack On Wednesday 12 September 2007, our parents, Chris and Elisabeth Mack, began a 4 day, 450-kilometre cycle from London to Paris in memory of our brother, Gregory Highwood-Mack. All the money raised has gone to supporting CRY. Greg collapsed at work when his heart suddenly stopped on 10 March 2006. After nine days in intensive care at the William Harvey Hospital in Ashford, Kent, surrounded by the people who loved him and whom he loved, Greg slipped away. During the nine days in hospital it was discovered that Greg had a heart condition called Hypotrophic Cardiomyopathy – a condition that remained undetected throughout his life. We now realise just how important cardiac screening is. It is our parents’ hope that the money they have raised will increase awareness and encourage cardiac screening in young people. When our mum suggested the cycle, it was more in jest than a serious proposal. However, as she thought more about it, the more the idea of cycling from London to Paris for CRY appealed to her. Many factors motivated our parents to take on this challenge. Our mum was born in France and French culture has always been a big part of our family's lives. Greg's love of the outdoors, his passion for cycling and his sense of adventure confirmed that this challenge would be the perfect way to honour his life. And it was a chance to get fit and raise money for CRY. A large part of their motivation for taking on this challenge was to honour Greg. Perhaps they had secretly hoped that the physical pain involved in the challenge would reduce the heartache felt since losing Greg. It was indeed both an emotional and physical challenge – neither having cycled in years! They purchased new bikes and began an intensive 12week training programme. On 12 September they set-off for London to begin their journey. Leaving Greenwich, along with 101 other riders, they covered 135 kms, through Kent towards Dover. The following morning, they set off from Calais for Abbeville. Contrary to popular belief, Northern France is not flat! Day 3 was a shorter ride to Beauvais, a stretch of the journey where we – Stephanie, Gabrielle, Camille – and Greg's fiancée, Laura, came to offer emotional and motivational support. Finally, on the morning of 15 September, our mum and dad began their final cycle into Paris. All 103 cyclists peddled around the Arc de Triomphe and along the Champs-Élysées to finish at the base of Eiffel Tower where family, friends and supporters met them with huge applause and admiration. When asked about the experience, our mum said: "Looking back on these past four days, I realise that the physical pain could never match the heartache of losing my Greg." But they both feel the experience was a positive one. Greg always used to say "just keep swimming" when faced with difficult times, and this journey has proven that with love and determination one can survive and find a way through. This 'epic' adventure has raised well above our parents’ original target of £8,000. At present they have helped to raise almost £16,000 for Greg's memorial fund at CRY. This money will be added to the £5,000+ raised by the skydive for Greg, completed by Greg's sisters, fiancée and friends and the cycle completed by Greg's work colleague, Matt Spain. Stephanie, Gabrielle and Camille Mack, Laura Manni

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Our Fundraisers

In Memory of David Bick The sum of £1,350 was collected from a raffle organised by Mr and Mrs Bick’s granddaughter Hannagh Pulley (below). The prizes were donated by the business community of Tamworth.

z Val Cookson sent in a donation of £300 for CRY from the sale of the Dollywood and Friends 2007 calendars. z Julie Hatton accepted a cheque for £800 on behalf of CRY from a Charity Presentation Evening held at the Masonic Hall, Middlesbrough on 17 May 2007. z Liccy Dahl sent in a donation for £100 via WinTennis Ltd. z Mr Roy Currell from Market Drayton has sent a donation of £150. z Sharlene Brown organised a Dress Down Day in her office and a donation of £1,086 was raised. A further matched giving donation of £1,086 has been received from Abbey National. z The Finance Department of Zoo Studios have sent in a donation of £300 for CRY. “Please find enclosed a cheque for £259 from donations collected from a sponsored River Race done by myself and my friend Dan. Hopefully we will have more money to send to you when all donations are collected.” Jonathan Newton & Dan Nichols

In memory of Kay Wilson “Please find enclosed cheques for £500 from Mr & Mrs Ford-Terry, raised through the sale of dance photographs, and £30 from us by way of a cash donation on behalf of the late Mr Dave Clark in place of flowers at his funeral.” Jacqueline, Ray and Kelly Wilson

z In memory of Mrs Marian Beatrice Colley and Suzanne we received a donation of £221.40 in lieu of floral tributes. z CRY Patron Kathryn Harries (left) has sent in a donation for £750, which was collected at the Coverwood Concert. The Just Giving page now stands at £1,170.

In Memory of David Elliott “My father John Fishwick died on 7 May this year, aged 87 years, after a long and full life and with a loving family around him. Unfortunately, his grandson-in-law, David Elliot, died aged 34 years of Sudden Adult Death in July 2002. We have supported CRY in the past after receiving help from yourselves. Please accept this donation (£350) in memory of my dad and David”. Mrs Janice Gilson

In Memory of Jenny Finney Karen Finney has sent in a donation of £745. This money was from her mum and dad’s Golden Wedding celebrations.

In Memory of Levon Morland Donations totalling £560 have been received from Mr & Mrs Readman, Mrs P Swainston and Radflex Contract Services Ltd.

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z An amount of £10,500 was raised by the Cobham Rugby Club, following the Windlesham Pram Race, which was held on Boxing Day 2006. Simon Halliday represented CRY to receive this donation. z Caroline McKenna sent in a donation for £252.25 in memory of ‘Vicky’. "In April this year I ran a raffle at the salon where I work in memory of my granddad who passed away from cancer and one of my best friends who passed away from Sudden Adult Death Syndrome. Your charity was chosen by Vicky's parents, the website gave them a lot of information which helped them to understand what had happened to their daughter when even the doctor's couldn’t explain it." “I have pleasure in enclosing a cheque for the amount of £3,697 as a donation to CRY. This money was raised by the Corporate Sales Department at the Chelsea vs Tottenham Hotspur match on Saturday 7 April. We trust that this donation will help with your very worthwhile cause.” Sheniz Osman, Corporate Sales Dept.

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Our Fundraisers

In Memory of Matthew James Kamis Trina Kamis has sent in a donation of £600 in memory of her son Matthew who died suddenly on 15 January 2006. Matthew’s family held a car boot sale and tombola in his memory to raise the funds. The helpers on that day included Matthew’s mum and dad, his brothers Phillip, Shaun and Mark, Aunty Christine and Rose and sister-in-law Marion.

In Memory of Kevin Stentaford “Please find enclosed a cheque for £1,055. We would like to donate this sum in memory of our son Kevin who we lost in August 2001. Kevin was only 20 years old when he collapsed and died whilst playing football. Walking the West Highland Way in Scotland raised this money. A distance of 96 miles which took over six days, from Glasgow to Fort William, along the shores of Loch Lomond, and through the West Highland area of Scotland, taking in Glen Coe and finishing near the foot of Ben Nevis”. Roy and Carol Stentaford were joined by a group of friends – Chris Huyton, Paul Dickens, Kate Horsley, Dave Simpson and Amanda Tasker. Unfortunately, Carol and Roy had to stop walking after 4 days and 64 miles due to sever blistering of the feet. Kate also had to pull out half way through the fifth day due to injury, but the other four members of the group finished the trek.

In Memory of David Quinney The proceeds from a charity shop which Mick and Dorothy Quinney had from 23 to 30 March, together with donations, have raised £3,050 in memory of their son David.

In Memory of Nathan Butler Arthur Butler and Mary Bury held a garden party in memory of Mr Butler's grandson Nathan and raised £150. z Judith Foulkes sent a cheque for £84.50 from the sale of CRY merchandise at the Nathan Butler Memorial Day on 14 July. “The picture (right) shows sales being ‘encouraged’ by Rebecca Foulkes and Matthew Clarke.” z "I am pleased to enclose two cheques for CRY's fundraising efforts on behalf of the Nathan Butler Memorial Fund. Nathan was my lovely, 16 year-old nephew, who died in February 2006. £535 is as a result of a disco that I organised in our local village hall in May. We had a great evening and special evening. Thanks must go to our DJ Pat Alcock who made the evening go so well. The second is from another good evening when our friends were holding a leaving part from the Manor Hotel in Cheadle. Steve Foster and Paul Farrington did an excellent performance of the Blues Brothers and raised a staggering £180." Carole Alcock 34 |

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Our Fundraisers

In Memory of Dylan Thompson

In Memory of Marcus Armstrong

Angela Harper has donated £681.65, from a Bucket Collection in memory of her son Dylan Thompson.

Marcus was 28 when he died. Two days previously he was at home when he felt ill. He was short of breath, sweating and had chest pains. The symptoms were identical to when he was rushed to hospital a few years earlier. It was diagnosed as a panic attack after lots of tests and four hours in hospital. Marcus told his partner Lucy he would be fine as he didn't want to go back into hospital again. The next day he felt better and went to work as a taxi driver in Harwich but his mum insisted he went to the doctor for a check-up. He reluctantly went, they did an ECG, blood pressure and other checks and he was assured everything was fine. The next day he collapsed and died. The post mortem gave the cause of death as Haemopercardium and dissection of the ascending thoracic aorta. Marcus was not overweight, hardly every drank and regularly played his favourite game of golf. He was a single figure golfer and represented Harwich & Dovercourt on several occasions. There are now three trophies played for annually in his memory.

In Memory of Ian Strange “Would you please accept this cheque in memory of my dear son Ian’s birthday on 16 May. Ian died on New Year’s Eve 1988, aged 21 years. I will always be forever grateful for the help and support I received and are still receiving from CRY. Keep up the good work.” Patricia Strange sent in a donation of £100.

In Memory of David Cochrane Cochrane Lodge Hopeytoun St John has once again been fundraising. They did a sponsored ‘2 Bridge Inn Walk’ from the Bridge Inn Ratho to the Bridge Inn Linlithgow and raised £7,000. Kathy and Sandy Cochrane presented the cheque to Sheila Green.

He lived in Colchester with Lucy, his partner of six years. They had only lived in their new house for five months. Lucy qualified as a teacher of music in Colchester and Marcus was very proud of her achievements. He had won a competition on the local radio station and had two tickets to a musical festival at Hampshire for that weekend. He spoke to his mum on the phone and then told Lucy how much he loved her before going out to fit his satellite navigation in his car for the following morning's journey to the concert. Ten minutes after going out of the front door he was found dead by the side of his car. The hospital said it was instantaneous and he never suffered but that is no consolation to those left behind. Marcus was popular and loved by everyone. So many people had many happy memories about him. He always believed you should live life to the full and this he had done. His death has left a massive void in so many people's lives. After 14 months Lucy still struggles with him not there. Lucy and her friend Jaye held a piano concert in Marcus's memory in May and all the proceeds went to CRY. "Following the recent charity concert held in May, in memory of Marcus Armstrong, we are delighted to enclose a cheque for the sum of £1,112 raised for your charity, along with individual donations totalling £155 in respect of the above event." Jaye Toms

Photographs courtesy of the Linlithgow shire Journal and Gazette

In Memory of Calum O’Reilly We have received a donation of £311.36 in lieu of floral tributes in memory of Calum O’Reilly. “This donation is being made in memory of Calum who died on 9 March this year. Calum was the son of one of our colleagues, Vera O’Reilly, and the donation is made by all of Vera’s close friends and colleagues at John Lewis Bluewater”. Issue 46

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In Memory of Christiaan Smith We have received a donation of £540.21 from Roger and Paulette Smith in memory of their son. Cardiac Risk in the Young

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Our Fundraisers

In Memory of Alun Mardon “Please find enclosed cheques totalling £200 in memory of my husband Alun Mardon, aged 25. Alun collapsed during a rugby game on 14 April this year. The cause of death was a blockage in the cardiac arteries. We were unaware that Alun had any heart problems.” Victoria Mardon

In Memory of Andrew Murch “I recently made contact with CRY for the first time following my son’s death in March of this year from an unspecified heart arrhythmia. The website has been an immense help to my family and I hope to establish further contacts over the coming weeks. A local club with which my family has a connection has donated £100 to a charity of our choosing. I am pleased to forward this amount to CRY.” Gordon Murch z Mrs Pauline O’Brien and Gail Penman have made adonation of £200. “Our donation was made in memory of Andrew Murch, who died in March 2007, aged 21. Andrew was the eldest son of our dear friend Hazel and her husband Gordon.” Pauline O’Brien

In Memory of Louise Worth

In Memory of Stuart Attridge

“Following a request by my brother-in-law, Thomson Jarvis, I am delighted to enclose a cheque for £1,000, kindly donated by Stagecoach Group.” Sue Jarvis

“Please accept this further donation of £500 in memory of our son Stuart Attridge who died suddenly in January 2006 from ARVC. It was raised by auctioning a signed shirt from Arsenal Football Club.” Rosemary Attridge

In Memory of Robert Burns “I am writing this letter to let you know that we had a five-a-side football tournament on 13 May. It was a Memorial Day for Robert Burns, my son we lost a year ago on 9 May, aged 19, and we raised £500”. Doreen Burns

In Memory of Neil Wickers Bill and Irene Wickers have forwarded a donation of £210, which was given to them at their Screening Day on 5 May 2007.

In Memory of Laura Moss “Thank you all for your support and help in organising the Charity Match played on 10 May between Meds and Porters of Dorchester County Council. The Porters won the match but the charity won on the day. I am pleased to say we raised £1,504, which I have enclosed for you. I had so much fun organising this and enjoyed myself.” Gareth Rolfe. Julie John represented CRY on the day. z A further £50 was also donated for the above event.

In Memory of Becky Heathcote “Today would have been her 23rd birthday and it seemed appropriate to send the donations received from all who knew her on this day (2 May).” Kate Heathcote

z The Blackburn & Darwen District Charity Stewards Committee presented a donation of £150 in memory of Neil Wickers and David Staff.

In Memory of Andrew Stevens “Please find enclosed several cheques which totalled £2070.63, which were collected over a period of fundraising events. These included a charity day, a concert and collection pot on the bar at the Apollo Theatre. Donations from friends, a cooked breakfast party for the Police at Cowes, profit from Virgin Vie and a memorial gig”. These funds were raised in memory of Andrew Stevens.

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Kate Heathcote sent in a donation of £330.

In Memory of Paul O’Neill Melissa O’Neill (pictured right) successfully took part in a Tandem Skydive and raised £100 in memory of her brother Paul.

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Bulletin Board

eBay for Charity If you sell items on eBay, it is now possible to donate a percentage of the sale value to CRY. This scheme was re-launched in May 2008 to make it even easier for sellers to donate to charity. MissionFish UK seller agreements are being terminated and replaced by new and simplified ‘eBay for Charity’ Seller terms and conditions. These new terms and conditions reflect a fundamental change to the programme: all sellers will be able to make and manage their donations from within their ‘My eBay’ accounts, rather than through a separate account with MissionFish. As a result, eBay sellers who donate through eBay for Charity will: z z z z

benefit from a lower minimum donation of £1, rather than the existing £2. no longer have to register with MissionFish before donating to a charity be able to make donations using the default payment method they have on file with eBay, e.g. PayPal or Direct Debit be able to request refunds directly through the Unpaid Item process, rather than through MissionFish

The eBay for Charity scheme was originally piloted by the BBC's Children in Need appeal, and is now open to all charities that register for the scheme. You can read more about how to support CRY via eBay for Charity at http://pages.ebay.co.uk/community/charity/index.html If you have any queries about how this works, please contact Kerry in the CRY office at kerry@c-r-y.org.uk

Online Shopping

Important information about Memorial Funds

If you do any shopping online, you can now raise money for CRY at no extra cost to yourself. Over 300 online retailers have signed up to the easyfundraising.org.uk scheme, including all the big names in retail – Amazon, Boots, BT, Currys, HMV, WH Smith and hundreds more.

If you would like donations to your Justgiving page to be in memory of a particular person, please specify this person’s full name in the text on your Justgiving page.

To use this scheme to raise money for CRY, simply visit www.easyfundraising.org.uk and create a free account. When you create an account, select CRY as the charity you wish to support. CRY is listed as 'Cardiac Risk in the Young (CRY)' in the A to Z of good causes that can be supported. Then, the next time you are shopping online, instead of going directly to the website where you will be purchasing items (e.g. amazon.co.uk), go to the easyfundraising.org.uk website and log-in to your account. Then simply find the website you wish to purchase items from in the A to Z list on the easyfundraising.org.uk website, and click on the link to visit your intended website. You can read full details on how this works at www.easyfundraising.org.uk

Similarly, if you would like donations to your page to go to a particular Memorial Fund that has been set up within CRY, please specify this in the text on your Justgiving page. This is very important in helping us to keep track of where donations should be going. Please also note that setting up a Justgiving page in memory of someone does not also automatically create a Memorial Fund for that person. You will still need to contact the CRY office to 'officially' set up the Memorial Fund within CRY. For ANY queries about Memorial Funds, please contact the CRY office on 01737 363222

CRY Talking Point www.c-r-y.org.uk/ssgroup.htm Talking Point is a place where you can talk to other young people (aged 35 and under) who have been diagnosed with a life-threatening condition; if you have had surgery or you are about to confront surgery; or if you just would like to chat about CRY’s Surgery Supporters.

Cuba Bike Ride www.c-r-y.org.uk/cuba_cycle_ride_skyline.htm Prepare to be overwhelmed by Cuba's natural contrasting beauty. From the dazzling beaches and clear blue seas of the Gulf of Mexico to the vibrant city of Havana, you cannot fail to be mesmerised by its traditional charm. For those of you in search of the challenge of a lifetime, Cuba will not fail to leave an indelible mark on you, providing memories which will last forever. You don't need to be an athlete to enjoy this charity cycle ride, although some training is advisable before undertaking this challenge (a training plan will be provided). Some people take part with friends or family, but most people come on their own – a great way to make new friends and raise money for CRY! In order for you to be able to take part in this fantastic charity cycle ride, we ask you to first make a non-refundable deposit of £349. The rest of the trip's expenses will be FREE providing you raise a minimum amount of £2850 in sponsorship money. CRY will receive at least £1425 for each fundraiser who takes part in this event. This event will be taking place from 13 – 23 March 2009. This should give you plenty of preparation time to gather sponsors, to book time off work, get in into shape etc. To receive an information pack about this event please e-mail forevents@c-r-y.org.uk The Cuba Bike Ride is organised for CRY by Skyline Events. Other overseas challenge events in aid of CRY are also available through Skyline, please see www.c-r-y.org.uk/free_fundraising_events.htm Issue 46

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God’s lent child

I’ll lend you for a little while a child of mine, God said, for you to love the while he lives, and to mourn for when he’s dead. It may be six or seven years, or forty-two or three, but will you, till I call him back, take care of him for me? He’ll bring his charms to gladden you, and should his stay be brief, you’ll always have his memories as a solace in your grief. I cannot promise he will stay, since all from earth return, but there are lessons down below, I want this child to learn. I’ve looked this whole world over in my search for teachers true, and from the folk that crowd life’s lane, I have chosen you. Now will you give him all your love and not think the labour vain, nor hate me when I come to take this lent child back again? I fancy that I heard them say “Dear God, Thy will be done, for all the joys this child will bring the risk of grief we’ll run. We will shelter him with tenderness, we’ll love him while we may, and for all the happiness we’ve ever known, we’ll ever grateful stay, but should the angels call him much sooner than we’d planned, we will brave the bitter grief that comes, and try to understand”.

This beautiful poem was handed to Tony and Evelyn Sayer as they entered the church for the funeral of their son, Kevin, on 14 April 1995. Eighteen year-old Kevin died on the night after our first player/public screening. We hope its words comfort you and bring you peace.