CRY Update Magazine - Issue 47

News and events from across the UK

Cardiac Risk in theYoung Update 47 Spring 2008

In this Update: z Founder & Chief Executive’s Newsletter Alison Cox MBE z Deputy Chief Executive’s Newsletter Steve Cox, Deputy Chief Executive z Meet our County Representative Sharen Stables, Cumbria z News from the CRY office z CRY Centre for Cardiac Pathology launch z CRY Downing Street launch CRY’s football initiative z 2008 London Marathon Report and photos z Interview with Professor Greg Whyte Race Across America (RAAM) z Kids for CRY Fundraising Our junior fundraisers z Our Fundraisers Fundraisers with their stories and pictures z Raising Awareness in the media Press coverage involving CRY

Every week, at least 12 apparently fit and healthy young people die in the UK from undiagnosed heart conditions.

CRY aims to work with cardiologists and family doctors to promote and protect the cardiac health of our young by establishing good practice and screening facilities to significantly reduce the frequency of young sudden cardiac death throughout the UK.

Cardiac Risk in the Young (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 Visit our websites: www.c-r-y.org.uk z www.sads.org.uk z www.cry-csc.org.uk

Newsletter from the Deputy Chief Executive Steve Cox

more time we have to spend on changes and corrections the more it costs to run this complicated service.

CRY Deputy Chief Executive You will notice that for the first time we have printed a full colour Update. In the past, when only a couple of thousand people received Update, this would have incurred a significantly increased financial cost which we were not prepared to bear.

However, printing technology has seen major advances in recent years and the extra cost of printing full colour on a large scale is now relatively small.

We are very pleased to find that more families are finding CRY than ever before. Although we are only too aware that nothing can alter the impact of the unnecessary tragedies that are still taking place, CRY can at least facilitate a process of expert fast-track referrals for families regarding pathology and cardiology. With your support our campaign to raise awareness is having an effect and our ongoing work to maintain the momentum is making a real difference. What this means for CRY as an office is that we need to continually improve our methods of communication with you. As part of that, we are doing our best to make sure you are being kept up to date with changes as they happen.

Memorial and ringfence funding It has been important to update our guidelines on what 'core funds' are used for and what happens when you wish to specifically ringfence for screening in your region. These guidelines form an important document that many families will already be familiar with.

In the past we have only sent out the guidelines upon request, normally after a family has raised ÂŁ5,000. We have recently decided to send them when a donation is first made to help avoid misunderstandings.

When you want to get a screening programme off the ground in your region a ringfenced fund can be useful. However, ringfencing requires a considerable amount of time. It is important for you to understand what you are entering into and therefore reading and complying with lengthy documents is an important part of the process! The choice is obviously down to you.

One of the options that some families may now want to consider is how to use their ringfenced fund. This is particularly relevant to weekend events where more than one family can fund an event at our screening clinics. Holding your own event can take a lot of time and lead to unexpected pressure and anxiety. Sharing your event can relieve much of this. Our first joint event was held like on 1 November at the University of Glamorgan in Cardiff in memory of Gareth McDonald and Stephen Mark Young. This took place with funds raised in Wales specifically for screening in Wales.

Alternatively, if you are happy for your donations to be directed to supporting our overall aims, then remember you are not under any pressure to ringfence. It is sometimes forgotten that CRY's screening programme is subsidised through grants to our research fellows.

Therefore every donation to CRY also supports screening, as well as further support and counselling for both young people diagnosed and families affected by bereavement. Raising awareness and research, too, are costly activities. Funding these is a vital part of our programme. In light of this, we are very proud that these 'governance costs' are extremely low compared to many other middle-sized charities. In fact, 80% of every donation you make to CRY goes directly to our initiatives (to the amazement and delight of our Board of Trustees).

Making our memorial and ringfenced fund statements easier to understand is an ongoing process. Most of the revisions we make are in response to comments from you. If you have any ideas or issues you feel we should consider please email me at steve@c-r-y.org.uk. It is so important to get this right and to minimise bureaucracy, as the

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Communication: the CRY e-newsletter Communication is another vital issue which comes up regularly. CRY now has many thousands of active supporters. After struggling against the clock for years we have now had to accept – as anyone who has been receiving it for a number of years will know – that our Update brochure is usually six months behind the dates covered.

Again, we hold ongoing evaluation to improve the way reporting is done and you will see some parts of the publication changing while others (such as our fundraising and raising awareness pages) will remain in a familiar format. We know that the delays are frustrating but with every mailshot now costing several thousand pounds for print and postage costs alone (quite apart from staff time) we obviously try to include all announcements.

Therefore, our e-newsletter is increasingly popular for those who like to stay in touch with events as they happen. Kerry aims to sends this out every two weeks so that people can be directed to links for new pages on the CRY website and to news articles as we get permission to reprint them. Sometimes it is simply impossible to tell everyone about major events, press releases, articles in national newspapers or new patrons.

Occasionally, as with the announcement of our new 12 young sudden deaths a week statistic and the accompanying CRY family videos, there is a press embargo until the launch date. In this case we circulated the information to our e-newsletter mailing list as the story was breaking with a link on the page for anyone who wanted to watch the videos. We now also endeavour to send email alerts each time we become aware of relevant national radio and television coverage.

We appreciate the e-newsletter does not work for everyone, and rest assured we are certainly not giving up on paper and dependency on our good old post office, which I am sure would go out of business without CRY! But circulating an e-newsletter takes seconds and gives instant access to everything that is going on in the news media and other medias that are simply too expensive to reproduce on DVDs. This potential is often forgotten.

We always aim to be prudent with the money you work so hard to raise and without which it is impossible for CRY to operate. We scrutinise our costs very closely, a constant challenge to how we can continue to develop and expand our goals. The reality is that the e-newsletter offers a tremendous opportunity for CRY to be in touch directly with you as things happen at little direct cost.

If there are things you feel we should be doing which we have overlooked please do not hesitate to contact me. I hope you understand that we are taking some very big steps forward right now. It is due to the fact that most of our support comes from you and your local communities that we are a powerful, uncompromising and independent voice that insists on being heard.

Best wishes for the New Year

Many thanks to Tim Woolley at Press Craft, Lithographic Printers, Surrey, UK. 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.

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Issue 47

Meet our County Representative Unfortunately no reason could be found. It took 18 months for the inquest to be held in England, where the coroner finally recorded a verdict of causes unknown because at that time sudden adult death syndrome (SADS) could not be used on a death certificate.

Thanks to CRY’s website and contacting the charity directly by phone I found out SADS could be hereditary.

I immediately had our daughter Toni tested. Thankfully Toni was fine even though, before Lee passed away, she gave birth to a baby daughter. As soon as Toni became pregnant with her second child we pointed Lee's SADS out to the doctors and the hospital put her on a 24 hour heart machine to keep an eye on her. Everything was fine and we now also have a beautiful one year-old grandson.

Sharen Stables County Representative for Cumbria In 2002 our son Lee went backpacking round the world with his girlfriend Rachel.

Since Lee's death I have found CRY enormously helpful, particularly in knowing there are people out there in the same boat, helping each other and also fundraising. Raising funds for CRY not only hopefully prevents this happening to other families but also keeps the memory of Lee and other youngsters like him alive.

On 3 March we received a phone call to say Lee had died in Goa, India. The day before had been Lee's 22nd birthday and he and Rachel had been out on a boat to see the dolphins and later gone out in the evening for a meal – generally a lovely day.

Even doctors seem ignorant of SADS. Last year a lady four miles down the road from me also lost her son to SADS after contacting her doctor. She was told it was a one-off and certainly wouldn't happen again.

When they went to bed that night Lee was full of the day's events and really happy. The following morning Rachel woke up to find that Lee had died in his sleep.

Thankfully, CRY sent me an information pack to pass on to her, which she took to the doctor's to get her other children tested.

Inside Update 47 Newsletter from the Deputy Chief Executive

2

Meet our County Representative

3

Newsletter from the Chief Executive

4–8

Reports from the CRY Office

9–11

CRY Centre for Cardiac Pathology

12–13

CRY Downing Street Launch

14–15

2008 London Marathon

16–18

2008 Race Across America (RAAM)

19

Kids for CRY Interview with Professor Greg Whyte

20

Kids for CRY wordsearch and jokes

21

Kids for CRY Fundraising

22–23

Running/Skydiving for CRY

24–26

Our Fundraisers

27–52

Our Fundraisers in Northern Ireland

53

Raising Awareness in the media 54–74

Issue 47

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Newsletter from the Chief Executive Alison Cox MBE

CRY Founder & Chief Executive March certainly roared in like a lion for CRY with our two highest profile launches ever occurring within seven days of each other!

The commitment of The Right Hon Andy Burnham, Secretary of State for Culture Media and Sport, to accelerate CRY's screening programme in community sport culminated in a launch at No 11 Downing Street (courtesy of the Chancellor, The Right Hon Alastair Darling) linking CRY with the Football Association (FA), Professional Football Association (PFA) and Football Foundation (FF). Maggie Darling was so impressed with CRY's work that she called her friend Sarah Brown, suggesting she should pop in and see what was happening. Minutes later Sarah was had joined us too! CRY families with children or partners who died suddenly while playing football also attended to raise awareness of sudden cardiac death in the young.

Many of the most prominent UK consultant cardiologists with an interest in screening for these conditions were also present.

Reaching the heady heights of No 11 was promptly followed by the launch of our fast-track expert cardiac pathology service under the aegis of Dr Mary Sheppard at the CRY Centre for Cardiac Pathology based at the Royal Brompton Hospital following a 10 month pilot. Families invited were those that had benefited from this service during this time. As with our No 11 launch the event was so well attended that any guest needing to breathe in had to take a step outside! Our unique pathology centre is believed to be the first dedicated sudden cardiac death laboratory in the world and the guests who toured the premises were duly impressed. Hopefully, in future, there will be no more cases like that of Luke Worgan (16) whose story is on page 73. Luke died in 2005 and his family's ordeal was horribly compounded by having to wait two years to learn what caused his death.

A fast-track expert service provision covering coroner’s costs is one of our key aims in reducing suffering and saving lives. The effort – both ours and yours – to raise awareness of CRY and our service provision is absolutely crucial in the battle to reach families so that we can truly support them at this most terrible time.

January Sir Clive Woodward OBE becomes CRY Patron We are delighted to announce that former England Rugby Union coach Sir Clive Woodward OBE has become a Patron of CRY. Sir Clive said "CRY's outstanding work leading the field in addressing young sudden car4 | Cardiac Risk in the Young

diac death is to be applauded. The fast-track services they now offer, including funding of coroners' referrals to the CRY Centre for Cardiac Pathology, are urgently needed – as is their innovative cardiac screening programme, both in the community and sport.

I am very pleased to be a Patron and will certainly do what I can to help."

Screening meeting (23 January) I was invited by Michael McGimpsey, Minister for Health, Social Services and Public Safety in the new Northern Ireland Executive, to a meeting regarding a screening programme in Northern Ireland. Ian McCall (whose son John died suddenly while taking part in an Under 19 rugby international in South Africa), CRY Deputy CE Steve Cox and Margaret Boyle, a member of the National Screening Committee, also attended the meeting.

Dr Sanjay Sharma and Steve Cox attended the working group that followed. Dr Sharma addressed the group, which was set up with medical professionals to debate the efficacy of screening in the community.

Colchester clinic (25 January) Caroline Gard was delighted to tell me that she had an excellent response to her next CRY clinic at Colchester Hospital after the Essex Rivers Healthcare Trust put an article on the front page of their newsletter.

Caroline started this clinic in memory of her son Andy (above), with the full support of her Primary Care Trust and Consultant Cardiologist Dr Yang.

CRY on SKY (27 January) Andy Scott takes every opportunity to tell the world about CRY and mentioned our work when speaking on SKY’s Big League weekend programme. Andy became a Patron after his career as a professional footballer was abruptly terminated when he had stopped playing during a match because he was feeling so ill.

He was diagnosed with hypertrophic cardiomyopathy by Dr Sanjay Sharma. Andy has campaigned vigorously for our screening programme ever since.

CRY Football initiative (28 January) Andy Burnham MP, Chief Secretary to the Treasury, called a final meeting with the CRY team and representatives from the Department of Health, the FA, the PFA and the Football Foundation to instigate a partnership to promote screening in the football community.

He announced that CRY would be launching this partnership at a reception to be held at Number 11 Downing Street on 28 February 2008.

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Newsletter from the Chief Executive February BBC radio coverage (7 February) BBC Southern Counties Radio breakfast show did an interview with trainee bereavement supporter Vanessa Tardif and myself on young sudden cardiac death. Vanessa was asked to speak about the impact of the death of her brother, Simon Pangborn (left), a fit and healthy athlete who died suddenly in July 2004. Audio clips can be downloaded from our website. www.c-r-y.org.uk/what_is_the_media_saying.htm Daily Mail award (8 February) Chris Grayling MP, Shadow Secretary of State for Work and Pensions and our local MP, popped in to the office again to see how we were getting on and to present us with the cheque for £10,000 awarded by the Daily Mail. CRY was one of the charities selected by Daily Mail readers to receive the award, which is supported by the Royal Bank of Scotland (RBS).

Chris, at six foot four inches tall, just managed to squeeze good-humouredly into a CRY heart suit (above) in order to be photographed handing over the cheque.

Talk to students at Guy's (18 February) I was asked to speak to the latest intake of Pathology students assembled at Guy’s Hospital on the importance of pathology following a sudden cardiac death and the vital issue of communicating with families after their tragedy.

I also visited Millbank to speak on BBC South East News about the tragic death of 27 year-old Sussex footballer Hervé King who died the same week as Emad Othman, player/coach at Portadawe in the Welsh Football League, who died aged 28.

This happened shortly after we had arranged to test Emad’s team, an event at which he would have been screened.

Dr Mary Sheppard APPG talk (19 February) Dr Mary Sheppard was invited to talk to the Cardiac Risk in the Young All Party Parliamentary Group (APPG) AGM. There are now 106 members of this significant group in the House of Commons.

Minister launches CRY football initiative (28 February) The new Secretary of State for Media, Culture and Sport, Andy Burnham MP (formerly Chief Secretary to the Treasury), hosted an event to 'kick off' CRY's initiative to help young footballers, in partnership with the FA, the PFA and the Football Foundation.

We were most grateful to the Chancellor, Alastair Darling, for granting permission for us to hold our reception at 11 Downing Issue 47

Top: The Right Hon Andy Burnham MP; Maggie Darling with CRY Patron David Walliams.

Bottom: Sarah Brown, Alison Cox and David Walliams

Street. We were also delighted when Maggie Darling introduced herself and also called her next door neighbour Sarah Brown to pop in.

CRY Patron David Walliams joined the speakers at this very high profile event. www.c-r-y.org.uk/downing_street_launch.htm

March Steve Cox awarded doctorate Our Deputy Chief Executive Steve Cox was awarded a doctorate in the Department of Epidemiology and Public Health at University College London (UCL). After six years of studying part-time whilst working for CRY this is not only an outstanding academic achievement at one of the world’s leading research institutes in the world but also an affirmation of Steve's tremendous tenacity!

It is a great strength for CRY to have a member of staff with such a unique understanding of the issues pertinent to screening for these conditions.

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Newsletter from the Chief Executive CRY DVD in schools (6 March) Diane and John Ber confirmed that CRY DVDs of Patron David Walliams undergoing screening were distributed to all secondary schools in Durham County. This was done in tribute to their daughter Kasia who had been suffering from dizzy spells and fainting before she suddenly died suddenly aged 17.

CRY opens first UK 'fast-track' pathology laboratory (7 March) Over 165 people – so many that latecomers could barely squeeze in – gathered at the Royal Brompton Hospital for the opening of the CRY Centre for Cardiac Pathology (CRYCCP). The new unit, led by Consultant Histopathologist Dr Mary Sheppard, offers a fast-track pathology service to identify the exact cause of unexpected cardiac death in young people. The unit will provide families with answers within weeks rather than the months or even years which many have previously had to wait.

Left to right (top): Michael Burgess, Sir Clive Woodward, Kevan Jones MP and Simon Halliday.

Bottom: Professor Tony Newman Taylor, Rupert Hunter and Dr Mary Sheppard

Speakers included our new Patron Sir Clive Woodward and Her Majesty's Coroner Michael Burgess and the Head of the National Heart and Lung Institute, Professor Tony Newman Taylor. The National Clinical Director of Heart Disease and Stroke, Professor Roger Boyle, was unable to attend at the last moment. He sent a supporting statement which was read by CRY Patron Simon Halliday. Rupert Hunter gave a very moving speech on behalf of all our families who have been affected by tragedy. Simon and Rupert, together with their family and friends, have raised nearly £500,000 for this service which will offer a free fasttrack expert service to coroners.

This is the first time that the coroners have been able to access a fully funded expert service. It should mean that, by receiving the results within three weeks, no family should have the agonisingly long wait they have endured in the past to establish the cause of death from these genetic heart conditions.

We intend to maintain this service after the three year grant to the Brompton and Imperial College expires. We are grateful to those now supporting us to secure the reserve funding for this vital service. www.c-r-y.org.uk/pathology_launch_march2008.htm 6 | Cardiac Risk in the Young

FA backs CRY (13 March) Following the Downing Street reception on 28 February, the Football Association publicly backed CRY's scheme on the FA website.

Interview with Dr Sanjay Sharma (19 March) CRY Consultant Cardiologist Dr Sanjay Sharma was interviewed on REM.fm (Radio Europe Mediterranean) about young sudden cardiac death and his work with CRY. An audio clip of this interview can be accessed on the CRY website. www.c-r-y.org.uk/what_is_the_media_saying.htm

April Sudden cardiac death article April saw publication of an article by CRY’s expert cardiac pathologist Dr Mary Sheppard in the Bulletin of the Royal Society of Pathologists (Number 142). In the article, entitled 'Sudden cardiac death in the young and helping bereaved families', she explained the importance of the pathologist's role in association with the cardiologists who screen the families.

"Meeting the families and explaining my role to them has opened my eyes to the importance of communication within pathology and with the public. We need to go out there and emphasise the vital role we play in the investigation of sudden cardiac death and other health issues. The bereaved families are looking for answers and need to know more about the conditions that led to the death of their beloved." www.c-r-y.org.uk/the_bulletin_of_the_royal_college_.htm Further exposure for CRY's fast-track pathology service appeared in the April edition of In Touch, the staff magazine for the Royal Brompton & Harefield Trust, which carried an interview with Dr Sheppard.

The CRY massage team

83 CRY entrants in the 2008 London Marathon (22 April) Congratulations to all who took part and special thanks to our team of supporters on the day and the crucial efforts of our masseurs who softened the knotted muscles of our runners in our rooms at the Hilton Hotel where the post-race hot shower we provided gave welcome relief to exhausted participants.

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Issue 47

Newsletter from the Chief Executive The funds raised from the London Marathon are absolutely key to the development of our annual business plan and the Herculean efforts of our runners are greatly appreciated. One of those who benefitted from a massage was Yetunde Ekpe who was interviewed on BBC television during the event.

Yetunde's father suffers from cardiomyopathy and, as her sons attend Eton, they were screened through our programme.

Johnny Lewis had a friend (Martin Gleave) running in memory of his brother Huw and was astonished to bump into Andy Holland in the massage room after Andy had just completed his run.

Andy and Johnny were neighbours in University halls in Swansea in 1993/94. Andy was in Room 203 and, with Johnny next door in Room 204, they got to know each other well. Andy even took a bet he could ride from Swansea to Johnny's home in Tenby after Johnny had challenged him that it was way too far.

After leaving halls, Johnny moved in with some other friends and apart from seeing Andy around campus, they lost touch. As you can imagine, he was very surprised to see Andy after his marathon run – almost 15 years after leaving halls, and even more surprised to find out that Andy’s brother had also died from sudden cardiac death. Just to round off this extraordinary coincidence, Andy ended up running 3:45 in the marathon, exactly the same time that Johnny ran four years ago.

Capital Sporting Dinner 2008 (24 April) I was again invited to speak at this annual black tie dinner which is held at the Grosvenor Hotel in memory of Howard and Sebastian English. Rugby stars speaking were Will Greenwood MBE (England), Gareth Edwards MBE (Wales) and Fergus Slattery (Ireland). The CRY table included Sanjay and Seema Sharma and founder members of our Surgery Supporters Club, Julie Mills and Kerry Ruse/Sheppard.

CRY ‘Silent at Heart' art project wins three awards (25 April) The 'Silent at Heart' art project won three awards for the South East London Cardiac Network at the Cardiac Nursing Awards 2008 held at the Café Royal in London. Inspired by Mauricio Vinvenzi, the project was partly funded by CRY and the Wellcome Trust.

It achieved first place in ‘Innovation in Arrhythmia Care', second place in 'Excellence in Primary or Secondary Prevention' and joint third place for 'Innovation through Service Development'. Dr Sanjay Sharma, who was heavily involved with the project, was present to collect the prestigious awards. www.c-r-y.org.uk/silent_at_heart_awards.htm Issue 47

May International footballer backs screening (8 May) Northern Ireland international Johnny Evans backed cardiac screening of young players on the Irish Football Association website. After the Northern Ireland U19 girls and U17 boys had ECGs (electrocardiograms) carried out by our screening team at the CRY Screening Clinic at the University of Ulster, Jordanstown, Evans praised the Association's Child Welfare Department for initiating the testing of the young players.

The Ray Wilkins Three Charities Golf Experience (16 May) This year's celebrity golf event was held at the Foxhills Club & Resort in Surrey. Each team consisted of three members of the public, plus celebrity team captains. We were delighted to receive a fantastic cheque for £10,000 raised by the event from Ray on behalf of the Three Charities Committee.

Midlands Bereavement Support Day (17 May) Fifteen people registered for our Beareavement Support Day, held at the Coventry Hilton. CRY Bereavement Supporters Margy al Chalabi, Vanessa Tardif, Stephanie Paterson and Joan Hillier took the groups on the day.

(L to R)Margy al Chalabi, Stephanie Paterson and Joan Hillier.

Sudden cardiac death film on BBC website (24 May) CRY supporter and former CRY Publications Co-ordinator Mark Fox became heavily involved with CRY after his twin sister Laura died suddenly of a heart condition at the age of 13. Mark has made a short film about the loss of his sister and the work he has done with CRY. There is a link to Mark's film, part of the BBC's Video Nation series, on the CRY website. www.c-r-y.org.uk/what_is_the_media_saying.htm

June British Cardiovascular Society Annual Scientific Conference 2008 (2-4 June) Dr Sanjay Sharma (left) was invited to present at the prestigious British Cardiovascular Society Annual Scientific Conference this year. He delivered a presentation on 'Cardiac Pathophysiology of Elite Athletes'.

Dr Sharma was recently awarded a Fellowship from the European Society of Cardiology (ESC). He is the only UK doctor on this commitee.

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Newsletter from the Chief Executive Surgery Supporters Club Meeting (8 June) The CRY Surgery Supporters Club had their summer meeting, providing an opportunity for members to receive counselling, socialise, discuss issues and put questions to Dr Sanjay Sharma. A photo from this meeting, plus many other photos from earlier Surgery Supporters Club get-togethers, can be found on the CRY website. www.c-r-y.org.uk/ssgroup.htm#photos Westminster debate on cardiac disease (June 10) Kevan Jones MP (left), Chairman of the Cardiac Risk in the Young APPG, secured a parliamentary debate on cardiac disease in young people in Westminster Hall. Responding was the Health Minister, Ann Keen (right).

Team CRY finish 3rd in 'The World's Toughest Bicycle Race' (11 June) Team CRY – Richard Ball, Clive Middleton, Greg Whyte and Mat Wilson – successfully completed the daunting 3000 mile Race Across America (RAAM) cycle race. The boys achieved their goal of a podium finish and managed to raise an amazing £35,000 from their adventure!

Team CRY (left to right): Greg Whyte, Clive Middleton, Richard Ball and Mat Wilson

spoke about her ambitions for improving services for the bereaved in her district.

After the talks family members were able to put questions to the speakers.

The day was considered informative and helpful by those bereaved families seeking to understand how it is possible Clockwise from top left: Dr Mary Sheppard, Coroner Penny Schofield, Dr Elijah Behr and Dr Sanjay Sharma for a fit and healthy young person to die from a heart condition they were completely unaware of.

Win Tennis Gala Dinner (21 June) I was invited to speak at the second annual Win Tennis Gala Dinner was held once again in support of CRY. The event was hosted by Andrew Castle, GMTV presenter and former GB Davis Cup player, and supported by CRY’s new Patron Roger Taylor (see below) and his wife Alison.

Roger Taylor MBE becomes CRY Patron We are pleased to announce that the former British tennis No 1 and Wimbledon semi-finalist Roger Taylor MBE has become a Patron of CRY. Roger has long been a supporter of our charity, attending several events and supporting CRY initiatives.

He says "I have supported a number of CRY events and am very pleased to become a Patron. CRY does outstanding work in identifying young people who are at risk from this silent killer through their unique screening programme.

CRY Family Medical Conference, London (14 June) CRY’s Family Medical Conference was held at the Institute of Child Health in London.

Tennis is a long time supporter of CRY and with my background in sport I would be delighted to help in any way I can."

We were again fortunate enough to have our expert consultant cardiologists Dr Sanjay Sharma and Dr Elijah Behr speaking and explaining the life-threatening conditions that can affect young people. Expert cardiac pathologist Dr Mary Sheppard and Her Majesty’s Coroner Dr Penny Schofield explained their roles after a sudden cardiac death.

CRY All Party Parliamentary Group gains its 107th member We are pleased to announce that Gwyn Prosser MP has joined the CRY All Party Parliamentary Group, and in doing so has become the APPG's 107th member.

Dr Scofield, the newly appointed Coroner for West Sussex, 8 | Cardiac Risk in the Young

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Issue 47

Reports from the CRY Office Kerry Gray

the day, plus transcripts and audio files of the presentations made, can be found at www.c-r-y.org.uk/family_medical_ conference_2008.htm

CRY Office Manager As usual, the first half of 2008 has been extremely busy at CRY, with all manner of events and new initiatives taking place. This seems like the perfect opportunity to remind CRY supporters about the CRY History page on the website.

This page lists chronologically many of the major developments at CRY over the years and is a good illustration of just how much CRY has grown since it was set up in 1995. See www.c-r-y.org.uk/cry_history.htm February saw the launch of an initiative involving CRY, the Football Association, the Professional Footballers' Association and the Football Foundation working together to promote the idea of screening in football. The launch took place at Number 11 Downing Street and was hosted by Andy Burnham MP. Photos from the launch, plus transcripts and audio files of the speeches made, can be found at www.c-r-y.org.uk/downing_street_launch.htm In March another important launch took place with the official opening of the CRY Centre for Cardiac Pathology, under the auspice of Dr Mary Sheppard at the Royal Brompton Hospital.

Details of the launch, along with photos, can be found at www.c-r-y.org.uk/pathology_launch_march2008.htm The London Marathon is always a big event for CRY and 2008 was no exception. We were delighted to have over 80 CRY runners in the Marathon, backed by our biggest ever team of supporters, masseurs and cheerleaders! We received a lot of great photos of our runners, which can be seen at www.c-ry.org.uk/london_marathon_2008_pics1.htm and at two other pages linked to this one.

Back in September 2007, CRY was involved in the 'Silent at Heart' art exhibition – the brainchild of Brazilian-born artist and curator Mauricio Vincenzi whose father died of sudden cardiac death at the age of 32. In April 2008 this innovative project won three awards at the Cardiac Nursing Awards 2008.

See www.c-r-y.org.uk/silent_at_heart_awards.htm CRY continues to maintain a high profile in parliamentary circles and on 10 June Kevan Jones MP (Chairman of the CRY All Party Parliamentary Group) secured a parliamentary debate on cardiac disease in young people in Westminster Hall. A transcript of this debate can be found at www.c-ry.org.uk/Hansard100608.doc June also saw the second ever CRY Family Medical Conference, which took place at the Institute of Child Health in London. This event was an invaluable opportunity for bereaved families to have access to top medical and legal professionals in order to get specific questions addressed and to help them understand the tragedies that have befallen them. Details of Issue 47

CRY supporters continue to send me their personal stories and fundraising event write-ups, and I am grateful for all the contributions I receive. We get a lot of feedback from families who have found it helpful and inspiring to read about the experiences and activities of others, so please do keep on sending your words and pictures to me at kerry@c-r-y.org.uk.

Rebecca Zouvani

CRY Fundraising Manager The variety and scope of fundraising events organised by families and other supporters continues to raise vital awareness and funds for CRY. In the first half of the year we have had supporters taking part in various 'open' activities through Skyline Events such as skydives, overseas treks in places such as the Sahara and Peru and the London to Paris Cycle Ride.

Other challenging events in which our supporters took part included a cycle ride from Lands' End to John O'Groats by James Brown (left) and his team, various marathons and half-marathons both here and overseas, a tennis tournament, car rallies and the gruelling 3000-mile Race across America undertaken by CRY Trustee Professor Greg Whyte and his team-mates.

Held between 11 and 18 June in aid of CRY, Greg and the boys managed to achieve their very ambitious target of third place in the race.

Our London Marathon team of 83 has so far raised almost ÂŁ150k. The first of our runners across the finish line was Kevin Hawker with his donated place. He completed the race in 2 hours 41 minutes! Mention should be made, too, of Rosemary Castle who has taken part in the London Marathon for CRY every year for the past five years. Rosemary ran in memory of her friend's son Alessandro who was about to become a semiprofessional footballer in Italy when he died suddenly. This year, as well as our usual volunteers, we were very lucky to have a large after-race massage team, several of whom were students from King's College Hospital in London. If you know anyone who lives close to London and would like to help at this event, please ask them to email me at rebecca@c-r-y.org.uk.

We really couldn't manage to provide an after-race service for our runners without the goodwill of our volunteers. We are particularly keen to recruit some more volunteer 'cheerers' to encourage and support our runners next year.

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9

Reports from the CRY Office still very much in its infancy but a massive thank-you must go to the Secretary of State for Media, Culture and Sport, Andy Burnham MP, who hosted the launch, for his help in setting up the initiative.

Sports Screenings The Philips 'Save Our Athletes' project continued when the Great Britain Boxing squad was screened in Sheffield. This was followed by the England Under-20 Women's Football squad who were screened prior to departing to Chile for the U20 World Cup and then the GB Basketball U18 female squad.

Other sporty and social events in the first half of the year included a sponsored 'Groove' and a number of charity social evenings. Golf matches included the Ray Wilkins Three Charities Golf Day at Fox Hills which raised £10,000 for us.

We are hoping to introduce, very soon, an online resource for our volunteer fundraisers. This comprehensive resource has been compiled by the Institute of Fundraising and we feel sure it will be very helpful. This will include fundraising ideas and materials, including budget forms, to enable you to work out the viability of your proposed activities. It will also enable you to link to fundraising guidelines for each activity you choose.

In addition to these summer Olympic sports, we also began screening some of the winter sports teams and have to date screened the Speed Skating, Biathlon and Snowboarding squads.

We continued our excellent association with England Rugby, returning to screen the England Academy and U18 Rugby Union Squads and for the first time the U16 squad as well. We were also asked to visit Lancashire County Cricket Club to screen their senior players and it looks likely that we will be invited back later in the year to screen their new academy intake, which will hopefully become an annual fixture.

We were invited to Bisham Abbey to screen the junior players at the Win Tennis academy for the first time.

Major fundraising activities in the pipeline include the next Bridges Walk, a clay pigeon shoot, and rowing a boat across the Atlantic. There will be a host of CRY awareness events around the country during CRY Raising Awareness week (10 to 18 October) and throughout October. We are very grateful to everyone who has responded to our request to hold an awareness raising event in their local community.

Finally, we screened a number of the Kenyan middle and long distance runners who were in the UK for a short training camp.

Thank-you all again for your efforts, especially in this very challenging financial climate.

The next few months are likely to be very exciting as we will be visiting a number of football clubs which currently include Chelsea, Middlesbrough, Fulham, Wolverhampton Wanderers, Queens Park Rangers and Leeds United. With new UEFA guidelines indicating that all players should ideally be screened twice before they are 21 years-old, it is hoped that this will lead to the regular screening of football teams in the future.

Anthony Shaw

CRY Screening Manager Reporting from The CRY Centre for Sports Cardiology (CRY CSC) Firstly, I would like to start by welcoming Jon Senior (right) who recently became the fourth and newest member of the team at the CRY CSC. Jon joins us from the University of Bangor, where he completed his degree and masters studies.

The major news from the CRY CSC was CRY’s visit to Downing Street for the launch of a series of clinics in association with the Football Association, the Professional Footballers' Association and and the Football Foundation. This initiative is 10 | Cardiac Risk in the Young

Schools Screenings We continued our annual screenings at Millfield, Eton and Worcester College and returned to King’s Bruton and Bryanston schools after the success of our initial screenings last year. We were also asked to visit Cranleigh School in Surrey for the first time and, due to massive interest in the screening, we have arranged a second screening date next June. Both screening dates went extremely well and it is likely to become a regular event every two years.

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Reports from the CRY Office Tony Hill

We also performed our first international screening when we were invited to the British School of Paris to screen their students. This was organised through Professor Greg Whyte and Richard Ball who, in addition to their help with this screening, also cycled across America in aid of CRY!

CRY Family Screening Manager The following family screening events have been held since my last report. The team returned to Preston to screen for the Lowe family in memory of Andrew Parr in November.

The other news regarding school screenings is a slight change in the screening process. Initially school screenings were ECGonly, but we are now able to carry out echocardiograms on anyone on the day where the Research Fellows feel follow-up testing may be necessary. Initial feedback on this change has been extremely positive and this type of service is what we are looking to offer at all CRY's screenings.

CRY Cardiac Screening Clinics Clinics continued at the CRY CSC, Colchester and Northern Ireland.

The major piece of news concerned the clinics in Northern Ireland where we screened a number of the football clubs based in Northern Ireland to fulfil a requirement from UEFA for players who represent their teams when playing in European competition.

As the CRY screening programme continues to develop, the next step is to expand CRY's screening clinics to cover more cities around the UK. There are currently plans to open a second clinic in London, this time in the centre of London and at other major cities around the UK including Birmingham, Liverpool, Manchester, Leeds, Newcastle and Edinburgh.

Mobile Screenings In addition to clinics, we trialled mobile screenings in Northern Ireland.

Clockwise from top left: West Midlands ECG Testing Campaign; Bowen family screening, Redcar; Rugby Football League screening; Staff and Wickers family screening, Darwen

In March we were back in Birmingham for the West Midlands ECG Testing Campaign in memory of Alison Linforth. Then we were off to the Isle of Man for a two day testing event in memory of Craig Lunt. At the end of the month we revisited Redcar with the Bowen family for their annual event in memory of Ian. June took us back to Darwen with the Staff and Wickers families for their annual event in memory of David and Neil. The family screenings are becoming more popular and as a result we currently have a waiting list for these events. I also managed an event for the Rugby Football League on behalf of the CRY CSC where we tested up and coming rugby juniors.

This began in January when we screened Brackaville Gaelic Football Club, followed by a screening organised by Strabane District Council and finally a screening at Pomeroy Gaelic Football Club.

Finally, we were asked by Tate Britain in London to screen the participants of an art exhibition. 'Work No 850' by Turner Prizewinning artist Martin Creed involves athletes running at top speed through the Duveen galleries (among the visitors) every 30 seconds, all day, every day.

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CRY also had a presence at the Cardiomyopathy Association's conference in London and the British Cardiovascular Society's meeting in Manchester where Dr John Rawlins (CRY Research Fellow, above right) was presenting research he had gathered at CRY screening events.

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Cardiac Risk in the Young | 11

CRY Centre for Cardiac Pathology

Inside the CRY Centre for Cardiac Pathology (CRYCCP)

The agonising wait endured by many families following the sudden and tragic death of a child or partner could soon be over with the opening of the UK's first ever 'fast-track' pathology laboratory to analyse the causes of unexpected cardiac death in apparently fit and healthy young people.

A grant in excess of ÂŁ200,000 has been awarded to one the world's leading cardiac pathology experts, Dr Mary Sheppard.

A pilot of the service has been run at the Royal Brompton for the past 10 months, during which time the team has received direct referrals from almost 100 coroners across the UK.

The new unit, known as the CRY Centre for Cardiac Pathology (CRYCCP) is based at the world-famous Royal Brompton Hospital. It is funded by CRY and has been jointly established with support from Imperial College London.

Alison Cox said "For years, we have been frustrated by the time it takes for families to get answers about a tragedy which happens without warning or explanation. A fast-track service accessing expertise, which also funds the coroner's costs of this vital investigation, is long overdue."

The official launch took place on Friday 7 March and was attended by more than 160 people, including bereaved families and supporters of CRY and the hospital.

Speakers included Michael Burgess, HM Coroner for Surrey and Coroner of the Queen's Household, new CRY Patron Sir Clive Woodward and Alison Cox MBE, Founder and Chief Executive of CRY.

Michael Burgess added "We thank CRY and we also thank Mary and her team here for the important service they are providing. If the turnaround proves quick enough, we may be able to avoid some inquests entirely."

CRY funding for the project is due to the astonishing fundraising of the English family who lost both a father and teenage son to sudden cardiac death as well as two fundraising events in 2006 instigated by CRY Patron Simon Halliday (England Rugby Union double grand slam winner and member of the team of 1991 World Cup finalists).

Howard and Sebastian English both died playing rugby.

Sebastian (aged just 15) died 10 years after his father, as his family were unaware he had an inheritable condition, highlighting the importance of a correct pathology diagnosis for appropriate family referral and screening.

The new centre will allow coroners to refer cases directly and receive a full report of the actual cause of death, usually within two weeks. Currently, some families have to endure a wait of anything from three to eighteen months for answers following their tragedy.

New CRY Patron Sir Clive Woodward

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CRY Centre for Cardiac Pathology

Clockwise from top left: CRY Patron Simon Halliday; launch guests; Kevan Jones MP, Dr Mary Sheppard; (left to right) Emily Maitlis, Kevan Jones MP, Simon Halliday, Sir Clive Woodward, Mark Cox and Jeremy Bates; CRY Supporters Rupert and Stephanie Hunter with Simon Halliday

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CRY No. 11 Downing Street Launch

Andy Burnham MP

CRY Patron Andy Scott

The new Secretary of State for Media, Culture and Sport, The Right Hon Andy Burnham MP, launched an initiative at No 11 Downing Street which linked Cardiac Risk in the Young (CRY) with the Football Association (FA), the Professional Footballers' Association (PFA) and the Football Foundation.

Chief Executive and founder of CRY, Alison Cox MBE, said "Andy has been a fantastic supporter for many years. This reception today further demonstrates his commitment to get something achieved in football and the fact that we have to work hand-inhand with the Government and leading sporting organisations to reduce incidence of young sudden cardiac death.

The organisations will work together to highlight the opportunities for testing young people to detect cardiac problems. The event was also attended by families whose children or partners who had died suddenly while playing football.

The Secretary of State became involved with CRY in 2002 shortly after becoming an MP. He was one of the first members of the Cardiac Risk in the Young All Party Parliamentary Group (APPG). He has openly pledged to help address the issue of sudden cardiac death in the young.

When 16 year-old Daniel Young from Atherton in Lancashire collapsed and died while playing football in September 2005, his parents (Dionne and Craig Young) invited Mr Burnham to attend a CRY cardiac testing event funded by donations from the community.

We are delighted that the FA, PFA and Football Foundation will highlight the issue of cardiac risk to the football community and inform people how they can access heart testing if they want it, having weighed up all the information and advice available to them."

Medical experts and charity campaigners believe that making screening available at 'grass roots' level can potentially save more young lives. The FA and PFA introduced a voluntary heart screening programme for 16 year-old players attached to a professional football club more than 11 years ago.

The Premier League also now undertakes biannual cardiac testing for all professional players, including examinations for such things as sounds, murmurs, pulse and arrhythmias.

The Secretary of State said "I am all too aware of the terrible impact that sudden cardiac death has on families across the UK, particularly following the death of a talented and popular young footballer in my constituency. Today's launch marks an important step as CRY continues to push forward cardiac testing in the community and take positive action to prevent these terrible and often preventable deaths among young people.

CRY expects to carry out cardiac testing on around 10,000 young adults this year, via either its specialist clinics across the UK or its mobile screening units which regularly visit sports clubs and schools.

Joint initiatives such as this, between health experts and the world of sport, can really help us to make personal cardiac testing accessible to as many young people as possible and I applaud the ongoing work and commitment of CRY.

The Health Minister, The Right Hon Ann Keen, also attended the event and said "Sudden cardiac death is a devastating condition that robs young people of their futures. But it is often preventable. That is why raising awareness among families across the country is so very important and I would like to con gratulate CRY for their tireless work in this area. It is wonderful to see health experts and sporting organisations coming together to offer potentially life-saving tests for young people. I wish

I also pay tribute to Daniel's family who have worked with CRY to ensure other families have the support and information that they didn't. This campaign is in memory of him."

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It is hoped that initiatives such as this partnership will help to increase the choice available to young people.

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CRY No. 11 Downing Street Launch

Left to right: Kevan Jones MP, CRY Cardiologist Dr Sanjay Sharma and CRY CE Alison Cox

CRY Patron David Walliams (left) and CRY Trustee Professor Greg Whyte

the initiative every success and hope it continues to grow."

Former professional footballer and CRY Patron Andy Scott was forced to retire from the game in 2005 after cardiac screening revealed that he was suffering from a potentially fatal condition known as hypertrophic cardiomyopathy. He said "There is clearly no reason why a young person should die when they are in the prime of their career and fitness. Today's announcement marks an ideal opportunity for all young players to be screened.

It literally only takes 10 minutes to save a life."

Above, left and right: CRY Supporter Dionne Young

Above, left to right: Ann Keen MP, CRY Patron Jeremy Bates, John Bramhall (PFA), Alistair Bennett (FF), Professor Peter Weissberg (Medical Director, British Heart Foundation) and the CRY van outside No 11 Downing Street.

Right: Maureen, Hayley and John Marshall. CRY’s launch in 1995 helped publicise the death of Maureen and John’s son, John, an Under 15 international footballer who had just signed for Everton. John suddenly died on Caps Day after two years attendance at the FA School of Excellence at Lilleshall. Far right: Dr Mary Sheppard with CRY Patron Pat Jennings

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2008 London Marathon Thank-you to everyone who ran for CRY, not forgetting everyone who supported our runners, both on the day and leading up to the race. At this year’s London Marathon we had 83 runners. Of these, 58 were Golden Bond runners and 25 who donated their places to run for CRY. The total raised so far is a fantastic £147,653.

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2008 London Marathon

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2008 London Marathon

Our runners in 2008: Julie Alcock Nic Allwright Chris Andreou Adrian Armstrong Annette Ashley Wayne Banks Karen Birch Margaret Hannah Bourne Graham Brown Susan Bryden Philip Butler Rosemary Castle Damian Coe Gav Copland David Cornwall Danny Coyle Michael Davies Andrew Davis

Mark Dickinson Yetunde Ekpe Mark Evans James Fairbairn Elizabeth Foster David Forster Sue Foyle Martin Gleave Jon Green Jennifer Harrop Kevin Hawker Madeline Haworth Andy Holland Alistair Holland Ian Hutchinson Michael Hutchison Robert Hutchison Caroline Jaggard

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Gary Lancet Jennie Lock Andrew Lowe Hugo Lowry Jane Loyd Jennifer Mackay Derek Mackay Lorraine Manlove Richard Manlove Duncan Marriott Hayley Mason Joseph Mercer Matthew Miller Christopher Moffett Alison Moffitt Naomi Newton-Fisher Ian Nichol Andrew Orchard

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Sarah Parsons Rosie Plowman David Pritchard Liz Prokopowicz Kimberley Rawson Sean Reading Neil Richardson Lisa Rockett Melanie Rogers Andy Roscoe Mark Salthouse Tom Scott Asa Skipp Tara Slinger Beth Stephens Robert Stoker Peter Sykes Mark Turpin

Kate-Serena Tydman Martin Upton Chris Valentine Stuart Vallance David Walbrook Ben Watson Caroline Westwood Melanie White Elizabeth Young Neil Young

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2008 Race Across America (RAAM)

Team CRY pulled off an amazing third place in this year’s Race Across America (RAAM), billed as 'The World's Toughest Cycle Race.' Greg Whyte gives us a few thoughts on the race: We were prepared physically to absolutely where we wanted to be and I think that came out in the third place that we got overall. We had that sorted, we had the nutrition sorted, and all the data that we collected and analysed shows that our energy intake was the same as the energy expenditure.

Europe which the Tour De France went over this year. Big old thunderstorms came in. We got them in Missouri. As we got on the bikes the rain started – it just switches on, boom! Torrential rain. And it was scary. On two wheels inflated like concrete to reduce resistance you don't get much grip, so we were spinning a bit. We came out of Johnson City and the storm was literally 400 metres behind us. We're on carbon bikes and the forked lightening was coming down next to us and lighting up the sky. But the great thing was, because the storm was behind

The one thing that we hadn't factored in was the concept of sleep deprivation. We were on maximum two hours of sleep a day, and that really does take its toll. Essentially you're sleep deprived, you are incredibly tired physically and then you're asking your body to get on a bike and push as hard as you possibly can at three o'clock in the morning. How difficult that element of it was really was a big shock to us. But it shows you what can be done. And to be fair, raising the money's not the work, it's all the preparation.

It's a huge challenge – four riders, 15 crew. And you need 15, that wasn't over-generous. A lot of personalities take a lot of management. You might be 'the main player' because you're the one actually doing it, but you'd be nothing without the people who are supporting you. When things go wrong, like navigation problems, we went wrong. What you have to remember is that they're not deliberately sending us the wrong way, they want to finish third as much as we do . . . everybody's working all for the same goal.

us, it was actually pushing us. We were clipping along at about 30 miles an hour, literally almost just gently pedalling – those moments were just incredible. What you're thinking to yourself is actually, we’re in third place, so the guys in fourth place are right in the middle of the storm. The storm was doing us two favours. One, it’s pushing us along and, secondly, it's slowing them down!

In the Rockies we climbed to 10,500 metres, the highest point we went to. That's 1000m higher than the highest road in

Team CRY achieved their top three place in the 'Four Person Male' category.

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KIDS FOR CRY Our interview with

Professor Greg Whyte CRY Trustee

Greg Whyte is one of the UK’s leading sport scientists and has worked with Olympic and professional athletes for more than 15 years.

A former Great Britain Modern pentathlete himself, Greg swam the English Channel in 2007 and earlier this year competed in the Race Across America (RAAM) for CRY. How did the swimming the English Channel compare with the cycling Race Across America?

Any ultra-endurance event has a unique misery about it.

Swimming the Channel is freezing cold and it's miserable from the very first stroke. The RAAM is not cold, it's quite the opposite. It's incredibly hot in places, although overnight it does get down to freezing, but it's having no sleep, the constant motion and the fact that it's actually over seven days rather than over seven hours. So each event has its unique misery and the RAAM certainly has got its own!

What were the best moments?

Obviously finishing third, which is where we wanted to be. But I think along the route it was the amazing scenery that you got as you drifted across the West Coast. You started right on the beach at Ocean Side. You then went across the deserts of California and you then climbed the huge mountains of the Rockies and down across the plains of Kansas which were incredibly boring but an incredible contrast to the mountains.

Actually doing that at 12 midday and also at 12 at night, with the contrast of temperatures, was truly magical. Probably best done in a car, not on a bike!

And the worst?

We got to the point where you couldn't wash your kit and you couldn't dry it. The cardinal sin for cyclists is to wear a damp kit, because all it does is give you sores around the backside.

All four of us were in absolute agony at one point going across Missouri. Humidity was up in the 90s and we couldn't get any dry kit on. It was painful just to sit on the saddle, never mind cycle, and the problem is you've got to keep going. You can't say to yourself “Well, actually, I'll take a couple of days off and I'll come back onto the bike”, you've got to keep going.

How did you keep going?

What you do is you draw on more pleasurable experiences and try and basically replace the misery with those thoughts.

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Incredibly difficult to do sometimes, but if you can do it then that should get you through. And I think when you talk to most of the guys who – talk to James Cracknell when he went across the Atlantic, similar sort of thing – it's basically just replacing it.

What are you going to do next?

Climbing Mt Kilimanjaro in February is going to be very exciting, I think, and a very tough time. A lot of people underestimate it.

It's one of those things where everyone knows somebody who’s been on holiday and walked up Kilimanjaro. It's like the marathon – because of that people think it's easy. It's not until you get up there that you realise how difficult it is. So it's a real challenge and I'm very excited with the guys that we're doing it with.

Why do you raise money for CRY? One thing that's always heartening for me is that you forget how generous people are. And I think if anybody is worried or anxious about whether they will raise the money, we raised over £35,000.

So if you are thinking about doing something for CRY then give it a shot because people will give you money, and there's no better way of doing a physical challenge than actually succeeding and raising money for a great cause as well.

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

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Because she had a pumpkin for a coach.

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Cardiac Risk in the Young | 21

KIDS FOR CRY FUNDRAISING In Memory of Hannah Turberville "I am pleased to enclosed a cheque for £257.06 which is the amount collected at our school production in the summer term. The donation is in memory of Hannah Turberville who was a pupil at this school and who died suddenly earlier this year." Mrs D M Walker, Head teacher

In Memory of Adam Drawbridge "Please find enclosed a donation of £235.89.

We are a small Early Years School and held a collection during our Christmas play. We wanted to donate to CRY, as an ex-member of staff and good friend recently lost her 23 year-old son to sudden adult death syndrome." Victoria Fry, School Secretary, Stockton House School

In Memory of Matthew Glan Hughes "Please accept the enclosed cheque for £50. This money has been raised by sixth form students in Kings Monkton School, Cardiff, in memory of their friend Matthew Glan Hughes. Our Matthew was 17 years when he passed away in April this year."

Paul and Fay Hughes

In Memory of Mike Scott Marje Scott sent in donations totalling £800 in memory of Mike. "As you will know by now Lady Lumley's school in Pickering always hold a nonuniform day near to Christmas in memory of Mike, who was Deputy Head Boy there when he died. This year they held the event on Monday 17 December and raised the brilliant sum of £500. As always we are very touched and thrilled that they still remember Mike and support CRY."

In Memory of Simon Pangborn "Please find enclosed a cheque for £900 to be added to Simon's Memorial Fund, presented by the FC Bracknell under 14's (formerly Simon's Arrows) football team. The team was put together

by Simon and managed by him up until he died in 2004.

At Simon's funeral, many people donated money to the team in his memory, but our boys are fully kitted out and do not need anything – lucky boys! Our son Harry continues to captain the team and the club has created a Simon Pangborn Shield, to be awarded each year to the club team that displays good sportsmanship and fair play – a discipline that Simon always encouraged in the boys. Proud to say that we have won it two out of the three years so far!" Sam Pangborn z "Over the last couple of days children from Lyndhurst School have been making peppermint creams and selling them. All the money each group makes goes to a charity which they decide on. We have chosen CRY as our Charity. We have raised £13.31.

We hope the money will be a great help." Emma Davis, Emma Colling and Eleanora Brown (Mega Mighty Minty Mints)

In Memory of Claire Beer "Last Summer, our daughter, Becky Kent (step-sister of Claire Beer) who is 14, completed an abseil down the Maternity Block at Ipswich Hospital. This was organised

by Mega, which enables people to raise funds for their chosen charity. Our sponsorship total has come to £198 for the Claire Beer Memorial Fund." Mrs A Kent

In Memory of Nicky Musgrave "I enclose a cheque for £75 which my friends and I raised last month by carol singing. The reason I would like to give this money to your charity is that my big sister Nicky died.”

Laura Musgrave

In Memory of Kallista Heavey "I am pleased to enclose the sum of £154 donated in memory of Kallista Lily-Ann Heavey from all the staff at Mill Hill Primary School and also £150 kindly donated by the United Co-op Band, Crewe, as one of our teachers is a member." A M Warren, Headteacher 22 | Cardiac Risk in the Young

In Memory of Cecilia Barriga We have received a donation of £250 from the Coloma Convent Girls' School.

In Memory of James Wood A donation of £205 was received from the Haileybury School in memory of James.

In Memory of David Williams Thamesmead School, Shepperton, have held various fundraising events throughout the year and raised £429.90 in memory of David.

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KIDS FOR CRY FUNDRAISING In Memory of Megan Williams "My daughter Megan, who sadly died on 8 November, was a pupil at Seahaven Dance School. At their show on 24 November they had a bucket collection and raised £420 for CRY. Please accept this in her memory. A £10 cheque is enclosed from the Hawkins family in her memory also." Maggie Williams z We have received further donations totalling £418 in memory of Megan. z "Please find enclosed a cheque in the sum of £112.22 representing funds raised by the staff and parents at this school. We choose a charity each year at Christmas time. Last year a friend of mine lost her little girl, Megan Williams, to cardiac problems not previously known and we hope this donation will go towards research into these terrible conditions."

Heather J Baldwin z "Please find enclosed a cheque for £500 from the school family at St Joseph's Preparatory School. Throughout the academic year 2006/2007 all the school family have worked hard to raise money to support your charity. During Lent our pupils were very creative and ran stalls, games and sponsored activities. They are always generously encouraged by their parents and families." Mrs S D Hutchinson (Head Teacher) z Dorothy Galloway sent in a donation of £164.60.

"At our Christmas performance we had a collection for CRY." z "Please find enclosed a cheque on behalf of Broadoak School, Partington. We raised the money by producing language translation cards and selling them to parents." Jessica Genovel sent in a donation of £52.04. z Some of the Year 8 pupils at Brynteg School took part in a 'Sponsored Silence' and raised £24.50. z Loreto Grammar School, Omagh have sent in a donation for £107 for CRY. "The cadets on our Squadron recently held a fundraising evening and have decided to donate part of the proceeds to your charity. Please therefore find enclosed a cheque for £45 which, although a small amount, is hoped to be helpful to you." Mrs C Warburton, Honorary Treasurer z Mr D Wood forwarded a donation of £97.43 raised from a collection at the Nursery Christmas production held at Colchester High School.

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z The staff, children and parents of Whitehill Infant School, Crowborough, East Sussex, have sent in a donation of £265.29. z The students of Easingwold School held a fundraising event on 7 November. The day included dressing up and a boys versus girls netball match which raised £501.63. z The pupils of Breadalbane Academy Secondary school raised £265.79.

z "This donation of £130.83 is the result of a collection taken at our Christmas Nativity Celebration."

Ann Gaffney, Head Teacher

z "Our school recently held a 'Stars in Your Eyes' show which involved pupils from Years 8 to 14 performing in our local theatre and we would like to donate £500 of the proceeds raised to CRY." R Hopkins, Strabane Grammar School z Despite g l o o my weather predictions, Haslemere L a w n Tennis Club (HLTC) held an extremely successful junior doubles tournament in aid of CRY on Monday 14 April. On courts unexpectedly bathed in warm sunshine, HLTC's Head Coach Beryl Bishop steered 34 players aged between nine and fourteen through a busy games schedule. With extraordinarily good timing, all the matches and presentations concluded just before a deluge of heavy rain sent everyone running for shelter in the clubhouse.

Local sponsors, JAM Tennis, Sports Locker and Forrest Cobblers, donated the prizes and trophies awarded to winning partners Sam Crossman and Ollie Duckworth (Under 10s), Finn Bridger and Rob Patrick (U12s) and sisters, Megan and Lauren Chuter (U14s). The organisers, Charlotte Maude and Helen Wright, would like to thank all the children who took part in the tournament for raising over £200 for CRY as well as the sponsors, whose generous support helped us to raise this significant sum of money. Following the day's success, Beryl Bishop has expressed a desire to hold more charity fundraising tennis events in the future.

www.c-r-y.org.uk

Cardiac Risk in the Young | 23

Running for CRY In Memory of Sebastian English

In Memory of Carl Stubbings

"My partner Phil Austin, nephew Chris Lane and his friend Dave Williams, ran the Cardiff Half Marathon in October 2007 to raise money for CRY. My cousin Keith Newton died suddenly in 1985 at the age of 22 after stepping out of the bath. The cause of Keith's death was recorded as ‘viral pneumonia.’ His son was three weeks old.

Stefano Zammuto took part in the London Marathon and raised £1,550.

In Memory of Christopher Haw Oliver Vernon-Harcourt successfully completed the Great North Run and sent in a donation of £110.

In Memory of Greg HighwoodMack Matthew Spain took part in the Great North Run, the Great South Run and the Hyde Park run and raised £567.82 in memory of Greg.

In Memory of Paul Simpson Nicholas Glynn took part in a Goblin event and raised £544 via Just Giving in memory of Paul Simpson.

In Memory of Philip Jefferies

Eight years later on 14 October 1993, my brother Howard English, aged 32, collapsed and died during rugby training. The cause of Howard's death was recorded as ‘floppy mitral valve disease.’ He left a wife, Stephanie, and three children: Sebastian aged five, Sabrina, three, and Titus, 14 months.

It was only after Howard's son, my nephew Sebastian, died during a rugby match on 15 February 2004 at the age of 15 that the true cause of all three deaths became apparent. They had all died as a result of arrhythmogenic right ventricular cardiomyopathy (ARVC). We now know the gene causing this condition has been present in at least three generations of our family and it is desperately sad to think that we had to lose three wonderful people before this was identified.

This is why CRY's work in raising awareness of sudden cardiac deaths in young people among both the general public and the medical profession is so important, so that other families do not have to endure the heart break that we have. The boys did so well in the half-marathon which they ran, somewhat poignantly, on the 14th anniversary of Howard's death. Phil, at the grand age of 50 completed his first distance run in a time of two hours 20 minutes. Chris, who had also never run a half marathon before completed the course in one hour 40 minutes and Dave finished in one hour 45 minutes. They raised £2,200 for CRY and the Sebastian English Memorial Fund.

Well done boys! I suppose I'll have to do it next time too..."

Elaine English 24 | Cardiac Risk in the Young

Andrew Barnes competed in the BUPA Great Capital Run and donated £315 in memory of his brother-in-law Philip Jefferies.

In Memory of Jonathan Leigh Jack Storr took part in the Great North Run and raised £735 via Just Giving for CRY.

In Memory of Richard Kitching In June Laura Cawthan ran the 10k Run in Nottingham and through sponsorship raised £2,968.70

In Memory of Adrian Regan "Please find enclosed a cheque for £425 from Peter McNamara and his brother-in-law David Sharp who completed the Great North Run. Adrian passed away, aged 34 years, in 2003. We would like to thank them very much." Joan and Chris Regan

In Memory of 'Gareth' Alasdair Roxburgh completed the 10k Race and Fun Run and raised £200 in memory of Gareth.

www.c-r-y.org.uk

Issue 47

Running for CRY In Memory of Tom Ap Rhys Price

In Memory of James Green

The Hertfordshire Trainee Solicitor Group took part in the Herts TSG Family & Friends St Albans 10k Charity Fun Run, which took place on Sunday 20 May. They donated £1,761.75 in memory of Tom Ap Rhys Pryce.

"As you may remember my brother, Stuart Ramage and I (Shelagh Green) ran the Great North Run at the end of September to raise funds for CRY." The amount of money raised from this event was £1,222.

In Memory of Darren Sharpe

In Memory of Mike Scott Marje Scott has sent in a further donation of £120 from the Great North Run.

Lorna Turner took part in a Santa Run in memory of Darren Sharpe and raised £155.

In Memory of Kevin Wilson In Memory of Kasia Ber Rory Horner took part in the Sheffield Half Marathon and raised £200 in memory of Kasia Ber.

In Memory of Ryan Darby Julie Alcock took part in the London Marathon and raised £100 in memory of Ryan Darby.

Michele Wilson sent in a donation of £1,678.

"We thoroughly enjoyed taking part in the Great North Run. The atmosphere was fantastic and it was also very humbling and inspiring to see so many people who have had their own tragedy or struggle in life running for charities so that they can help and support others in similar circumstances. I was very proud to run for CRY in memory of my big brother Kevin, who was a keen half marathon runner himself and would have been very proud of me taking on such a challenge just ten days after the first anniversary of his death." z "Please find enclosed a cheque for £831.50 from money I have collected for my participation in the Great North Run for CRY. I ran in memory of Kevin Wilson, who was an Admin

In Memory of Katrina Brown Stephen Henderson took part in the Chicago Marathon and sent in a donation of £655. This money has been matched by his employer ABN Amro, making a total of £1,310 in memory of Katrina Brown.

In Memory of Cecilia Barriga Mike Fleet completed the Lexus Croydon 10K Race and raised £150 in memory of Cecilia Barriga.

In Memory of Ashley Livesey "Please find enclosed a cheque for £515 which was raised by my company's Chief Executive, Mr Hugh Broadbent and Associates, including partners of First Choice Homes, Oldham. The monies were donated by way of several people, including Mr Broadbent and myself taking part in a coast to coast ride, off road and on, from Whitehaven to Sunderland in August 2007.

The ride was undertaken in memory of our son Ashley who suddenly collapsed whilst running for his school in an interschool's cross country event in March 2004, as part of several events undertaken by myself and his family, collectively known as Team Ash." Gary Livesey

Issue 47

Assistant in my College, St Edward's, Liverpool. I hope this, in some way, provides assistance for the help and support you give families and the everyday expenses you incur." Luke Ferguson z A total of £910 was raised by Charlotte Brown for her competing in the Great North Run.

In Memory of Rhian Nadine Fry Dr Louise Budd completed the Great North Run and raised £275 in memory of Rhian Nadine Fry.

www.c-r-y.org.uk

Cardiac Risk in the Young | 25 25

Running for CRY

Bath Half-Marathon 16 March 2008 z A donation of £500 was received from Peter Collins who ran in the London Marathon this year.

z Andrew Shiel completed the Great North Run and raised £150.

z David Simpson took part in the Great South Run and raised £200.

z Mr John Mayhew donated £300, raised by completing the London Marathon in April.

z Nina Aretakis took part in the Experian Robin Hood HalfMarathon and raised £150 via Just Giving.

z "Alison and I completed the 2007 Great North Run in 2 hours 24 minutes. We found the run very hard, hot and hilly, but we have pleasure in enclosing £1,000." Tina Brett and Alison Clarke

z For completing the Glasgow Half-Marathon, Elaine Graham and her team donated £1,721. Her employer, Capital One, has donated an additional £2,000 through matched funding. z Alison Jeffery has sent in a donation of £259.19 after she took part in the Great North Run. z Paul Clark took part in the Great North Run and raised £137.50. z Craig Smith took part in the Great North Run and raised £378.50. z Pam Edmunds took part in the Great North Run and raised £202. z Michelle Lewins and Grant Watchman took part in the Great North Run and raised £224.40.

z Paul Winkle took part in the Great South Run and raised £965. This amount was also matched by his employers, BP. z After completing the Belfast City Marathon in May, Joel Ferguson donated £300. z Elaine Freeman took part in the Great South Run and raised £169. z David Elms raised £145 in sponsorship from competing in the Cardiff Half-Marathon in October 2007. z Mr John Bowden took part in the Great Manchester Run and raised £105.

Skydiving for CRY

z Andrew Markam took part in the Great North Run and has raised £155.

z Mrs Hackwel-Atkins took part in a tandem skydive and raised £172.

z Michelle Broadley completed the Great North Run and raised £150.

z Jack Sheehan successfully took part in a tandem skydive and raised £120.

z Emma took part in the Bath Half-Marathon and raised £255.78.

z Ross Haywood sent in donations totalling £330 and Mark Whitehouse £350, raised from taking part in a tandem skydive.

26 | Cardiac Risk in the Young

www.c-r-y.org.uk

Issue 47

Our Fundraisers In Memory of Vicky Stockton “It all began – as I believe almost all great plans begin – down the pub. Myself and two good friends were sampling a selection of particularly refreshing beverages whilst discussing the possibility of a project we could engage ourselves in. We immediately discovered a few obvious parallels in our approach to this, and they involved travel on the cheap and an excuse to swan about in otherwise unjustifiably ostentatious car best seen outside a merchant banker's garage sometime in 1985. It was at this moment that we decided we needed to attend a banger rally and thus team 'Gin'll Fix It' was born. The team consists of me (Ben Fisher) and my two partners in grime, Chris Lingwood and Paul Arthur.

This came in the form of a charity event, and after the loss of a very dear friend Vicky Stockton last year we thought we could perhaps attempt to bring something positive from it and help people with a similar condition. This is the sort of thing Vicky strongly believed in, and if she were still here today then I'm sure she'd be the physical fourth member of Gin'll Fix It as well as the spiritual member that she will always be anyway. It was therefore with great satisfaction that not only did the car (MINKY) complete the 14-day, 5000 mile round trip with barely a complaint, but that we were also able to raise £3000 for Cardiac Risk in the Young.

The rally we chose is fully ‘organised’ by Street Safari and is one of many events they run each year. The routes cover many destinations throughout Europe but we decided we wanted a bit more of a challenge and the possibility to reach an entirely different continent. With this in mind we chose to join the 60 or so other teams taking part in the Calais to Casablanca rally, and therefore be able to say we drove to Africa. The main stipulation is the car used must not be worth more than £100. This would prove to be one of the largest challenges of them all.

The event was not a race and no prizes were earned for arriving anywhere first. Points are awarded for categories such as longest hitch-hike, most impressive bodge, biggest pile of junk and various other challenges along the way. The majority of the cars taking part were not expected to survive the journey and would be scrapped or auctioned, leaving the participants to return to the UK via a more reliable mode of transport. We, however, decided to also make the return journey in the car we set out in. This would mean over two weeks of tortuous driving through France, Andorra and Spain, then crossing the straits of Gibraltar to Morocco and on to Casablanca. After a brief stop, we would then turn the car around and make the same journey home, with a little trip over to sunny Portugal for good measure!

The car we chose was a 1985 BMW 7 series. Rescued from a puddle out the back of a garage near Bristol, we hoped after several months or tuning and modifying and help from some sponsors, 'MINKY' would finally be ready!

It soon became obvious that we had bitten off a bit more than we could chew. With all of us working full time and having to travel across the UK to meet every weekend, we realised we required some motivation.

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We'd like to take this opportunity to thank all those whom donated with such generosity, as we clearly smashed our ambitious target of £2000, which is a testament to the great positive impact Vicky had made on all those who knew her.” Ben Fisher There are many more details surrounding the trip on our own website: http://www.thousandmonkeys.com/ginllfixit/ including a link to Paul's blog which contains loads of pictures from the event. z “The ‘Gin'll Fix It’ Car Rally from Calais to Casablanca (and back to Lancaster) raised £2,843.60 in memory of Vicky."

Chris and Julie Stockton z "Pennine Magistrates, who cover Burnley, Pendle and Rossendale, raised £232.20 from their Christmas raffle and decided to support CRY after their members heard about our loss from Julie." Chris and Julie Stockton

www.c-r-y.org.uk

Cardiac Risk in the Young | 27 27

Our Fundraisers In Memory of Polly Hughes

In Memory of Matthew Kamis

"All our employees at Dalehead first heard about CRY when our Managing Director, John Hughes, lost his daughter Pollyanna in March 2006, which shocked us all. Therefore when the Samworth Challenge was put to the company it seemed like the ideal opportunity to raise some money for your extremely worthwhile cause which has in many ways affected us all.

Within the Company, four very fit people, Tom Begg, Wayne Fairhurst, Larsen and Graham Gidney, were chosen to participate in this Challenge, which included running, cycling and swimming. In total, £3,431 was raised by everyone at Dalehead." Tom Begg, General Manager, Dalehead Foods Ltd

Mrs Trina Kamis sent in a donation of £1,456.

"My husband and I would like to thank all those concerned in the sponsorship of Corp of Drums 10 hour Drumming for our son Matthew James Kamis, and also Matthew's work colleagues, family and friends."

z Julia Hughes forwarded a donation of £100 from West Wickham Village Hall in memory of Polly.

In Memory of Paul McGlynn "Please find enclosed a cheque for £250. My husband Paul died on 4 January 2006 from ARVC. This donation is from monies collected in lieu of Christmas presents between myself and Paul's family. I hope and am sure that this will help in your continued support and research into sudden deaths." Mrs K McGlynn

In Memory of Dave Sanger "I am enclosing a cheque for £500 from the company's annual charity fund (Firmin Coates Limited) in memory of David Sanger."

Pam Sanger

In Memory of Tom Clabburn Paul Clabburn forwarded a donation of £700 from News International in memory of his son Paul.

In Memory of Charlie Headland Ann Headland forwarded a donation of £100 in memory of her son Charlie. "Charlie was such a special son to me. Special because we adopted him when he was 12, having fostered him from six years old. Special because he had learning disabilities. Charlie had lived very happily in a care home for several years, coming home regularly for weekends. The evening before he died they had enjoyed a very lively and happy evening. Thank you for your support from CRY."

In Memory of Mary Woods In Memory of Jennifer Hawes "Please find enclosed cheques to the value of £723 which was raised by a concert at our church. I would be grateful if you would add it to the above fund in memory of our daughter."

Marilyn Hawes

In Memory of Nicholas Thorne Rob Thorne donated £398.15. The money raised was from the Bridges Walk and general donations.

We have received donations totalling £255 in lieu of floral tributes in memory of the late Lucy Mary Priscilla Woods who died on 19 November 2007.

In Memory of Lauren Holly Lyndsay Butler took part in the Kilimanjaro Trek in October 2007 and sent in a donation of £175 in memory of Lauren.

In Memory of Robert Lancaster Marc Boughton sent in a donation of £250 in memory of Robert Lancaster who died on a family holiday in March 2007.

28 | Cardiac Risk in the Young

www.c-r-y.org.uk

Issue 47

Our Fundraisers In Memory of Kim Wheating

In Memory of Danny Young

"When the opportunity arose for Cluttons to sponsor a team of girls to take part in the 24 Hour Three Peaks Challenge and raise money for charity, I thought it could be good fun. After all, it was only walking. I was also very keen to support CRY as one of our nominated charities following the sudden death of my best friend, Kim Wheating, from arrhythmia. Kim and I had climbed Scafell Pike when we were 19. It therefore seemed a suitable challenge to undertake, albeit 25 years later and my being 20 years older than the rest of the team! In fact I did not recognise any of the Scafell Pike climb, but that might have been due to the fact that it was midnight by the time we got to the top! When we started the challenge at the bottom of Ben Nevis at 9.12am on Saturday, the team of seven were apprehensive and I had not quite realised that mountains were so high! At Kim's funeral, her daughters read Helen Steiner Rice's moving poem that included the words: Feed not your loneliness on empty days, But fill each waking hour in useful ways, Reach out your hand in comfort and in cheer And I in turn will comfort you and hold you near; And never, never be afraid to die For I am waiting for you in the sky!

I was certainly feeling each waking hour and on reaching three of the highest points in the UK I did feel nearer to my dear friend and it may have been this uplifting feeling that that enabled me to achieve our challenge. We all completed the task at 9.10am on Sunday, some 23 hours and 58 minutes later and with only two minutes to spare. In total, we have managed to give CRY £3,550." Philippa Railing and Lauren Hunt

In Memory of Carl Stubbings Heather and David Stubbings have forwarded a cheque for £600 from Derek and Audrey Sunderland. Derek and Audrey donated their Golden Wedding Anniversary gifts by asking for money towards Carl's Memorial Fund.

Our CRY County Representative Sue Jarvis collected a cheque of £637.82 from the Talbot pub in Atherton in memory of sports-mad Danny.

"The money was raised by holding a charity auction. One of the items auctioned was a football shirt signed by the Manchester United team. Also on offer was a meal cooked by the pub chef and an evening out with one of the bar staff.

Everyone had a fantastic night."

In Memory of Faye Linton Lynda Linton held a fundraising day in memory of her 25 year-old daughter Faye who died suddenly in October 2006. The event took place on 30 November 2007 and included an auction, raffle, bingo, buffet and karaoke. This event raised £3,736.25.

"Faye was within days of going on a 'once in a life time' holiday to America when we found her dead in bed on the morning of 30 October 2006. The doctors knew that Faye was in heart block but as she had a pacemaker fitted less than six months before they were happy for her to go, even though they did not at that time know what was causing it. She was a beautiful, happy, kind and very hard working young woman. She worked in a very busy call centre for Barclays Bank in the business section. As you can imagine, her loss has devastated her family and friends. What we would like to see happen is for our donation to go towards research into this condition so that it could be detected in the living." Kevin and Lynda Linton

In Memory of Howard Jennings "Please find enclosed cheques for the sum of £4,148 raised from our charity golf tournament on 3 September in memory of Howard. This totals £4,628, (including the £500 from Lloyds TSB, via the endeavours of Carole Haylock who participated in a fundraising charity golf day) that has already been received by CRY. What a fantastic result this year."

Keeley Ashley

In Memory of Phillip Elliott Helen Elliot sent in a donation of £200. “Please accept the rest of monies donated at my husband’s funeral. Phillip died suddenly at home on 7 December from a massive heart attack. Phillip was only 47 years old and was a fit and healthy guy who loved hs sport. His son George has been tested at Leeds Carnegie by CRY and we as a family decided that CRY would be a worthy charity.”

Mr and Mrs Stubbings have also sent in a donation of £3,318 from fundraising events they have held.

Issue 47

z The Easingwold with Raskelf Parochial Church have forwarded a donation of £790.56 in memory of Phillip Elliot.

www.c-r-y.org.uk

Cardiac Risk in the Young | 29

Our Fundraisers In Memory of Levon Morland "Please find enclosed a cheque to the value of £10,000. The presentation was made at our annual Grand Charity Night held at the Chilton Lodge Hotel, Houghton-le-Spring, on 7 September 2007. A great night of music, dance, eating and drinking was had by all, while we raised cash and awareness of CRY's campaign. Many thanks to all who took part and to our main sponsors of the event: Rosebery Inns and Leisure, Thompson's Solicitors, Rowley Ashworth Solicitors, Browell Smith & Co. Solicitors, Northumbrian Water, and the big prize donors – Northumbrian Water, Electrolux Home Products, Husqvarna (Flymo), Slaters Menswear and Chapmans Jewellers." Jeff Morland z Jeff Morland also forwarded cheques amounting to £355, sent from S Donaghy, Mr and Mrs Carr, DM and P Holding, Mr and Mrs Vasey and Mr and Mrs Broadley.

In Memory of Michael Jeffery

In Memory of Dean Williams

"I am writing enclosing cheques amounting to £3,140 from sponsorship raised by the friends and family of Michael Trevellyan Jeffery, who tragically died on 1 October 2006, aged 29 years, whilst competing in the Great North Run. 27 of us competed in the event on 30 September 2007 in his memory and those who couldn't compete (his children included) cheered on from their armchairs. I know that these funds will be put to good use by your charity and we all thank you for helping to raise awareness of SADS. Medical research and screening would appear to be the only way to prevent premature death and the devastation it causes in its aftermath. We support you fully in all your hard work." Alison Jeffrey, Kathryn and Joe (Michael's widow and offspring)

In Memory of Mark Marden

In Memory of Brice Ginisty

"Following our fundraising events in September and October 2007 I am pleased to attach two cheques totalling £2,452.75. These monies were raised in memory of Mark Marden, the son of a colleague within the team." Pam Dickins, on behalf of the Release Management Team at Norwich Union

"VF Corporation annually recognises the top 100 Associates who accumulate the highest number of community service hours. To honour this year's winners, a US$1,000 contribution will be donated to the qualified charity of their choice." Susan Williams, Treasurer, The VF Foundation

In Memory of Philip Abraham

In Memory of Jane Starr Mrs A Zienkowicz sent in a donation of £500 in memory of Jane. "Last year, on 17 May, I lost my best friend Jane Starr from a rare heart condition.

This charity now means a lot to me. We did a 14 mile charity walk – me and three other friends."

30 | Cardiac Risk in the Young

"My husband and I celebrated our 25th wedding anniversary on 15 October this year and rather than receive presents we asked our friends and family just for a donation to CRY. We lost our son Dean on 22 June 2002, aged just 19 years. He was fit and healthy, loved his football and sports, loved people and loved life itself, as any 19 year-old does. He went to bed on the Friday night, kissed me and his dad goodnight. The next morning his boss rang to ask why Dean was not yet in work. I went into his room and found him – nothing could be done. That was the day that changed our lives for ever." Joyce and John Williams

J A Smith, Centre Manager, Hedge End Park, sent in a donation of £100. "Throughout November and December we had a seasonal scene in the Mall and this cheque forms part of the donations kindly thrown into the setting during the period of display."

www.c-r-y.org.uk

Issue 47

Our Fundraisers In Memory of Christiaan Smith Mr Edward Francis made a donation of £455 in lieu of flowers when he lost his wife Pamela.

Pamela had many times helped to raise funds for CRY.

In Memory of James Wood The Broxbourne Sailing Club held their 12 Hour Sail Day on 4 August and raised £780 in memory of James Wood. z At their annual event the Broxbourne Tennis Club raised £219.87.

In Memory of Mark Liengie "Please find a cheque for £237.24 raised in Holy Family Church after Masses, in memory of our son Mark Liengie who collapsed and died, aged 20 years old, on New Year's Eve 2001." Heather and Joe Liengie

In Memory of James Patrick Patterson "Campion Old Boys Golf Society organised a golf day at the Warley Park Golf Club in July and raised £2,500 in memory of James Patterson.

James was a former pupil of Campion School in Hornchurch and the Old Boys Rugby Club."

Peter Patterson z The Billericay Circle of the C a t e n i a n Association chose CRY as their charity in memory of James Patterson, son of Peter Patterson, a member of the Billericay Circle, during Steve Haigh's Presidential year. At their Past Presidents evening in May 2007, Steve presented two cheques totalling £2,120 to CRY Representative Mike Aylott. James was 28 when he died suddenly of Brugada syndrome in September 2005.

In Memory of Adam Keeling David and Susan Keeling sent in a donation of £232. "This was collected in memory of our son Adam Keeling who died, aged 16, in 2001. The money was raised through raffles and donations by the regulars at ‘The Sportsman’."

In Memory of Alison Linforth

In Memory of Stevie Wiggins Simon Mulholland forwarded a cheque for £120. "The money was raised through a raffle at a Casino night held at Preston Grasshoppers RUFC in memory of Stevie Wiggins."

"Please accept a cheque for £130 from my colleagues at the Royal Bank of Scotland, Trade Service, Birmingham. This is continued support in memory of our daughter Alison who we lost on 11 September 2003.

Also a fantastic cheque for £2,750, raised by the Longbridge Methodist Church over the last 12 months via various fund raising activities. This is the church where we held Alison's funeral service." John, Eve and Gemma Linforth

z Neil Ashton took part in the Coast to Coast Cycle Ride and raised £290 via Just Giving.

In Memory of Tabitha Shapland Alex and Jane Shapland have sent in a donation of £135 raised at the Easter Egg Raffle in memory of Tabitha.

Issue 47

In Memory of Thérèse Field "Cheques totalling £735 were raised at a dinner dance organised by the family of Thérèse to remember the 10th anniversary of her death.

The event was attended by almost 100 people and was a lovely evening". Tara Gore

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Cardiac Risk in the Young | 31

Our Fundraisers In Memory of Greg Highwood Mack Christopher and Elizabeth Mack donated £7,470 from competing in the London to Paris Cycle Ride in September in memory of their son Greg. z Chris and Elizabeth Mack have sent in a further donation of £250 raised through the same event (the Just Giving site stands at £7,020). In November Chris wrote “Please find enclosed cheques for a total of £550 which I think represent the last of the sponsorship that my wife and I raised through our sponsored London to Paris Cycle." z "A cheque for £200.14 was presented to CRY Representative Vera Looker by Camille Mack in memory of her brother Greg.

During the presentation Camilla read out her story and then brought the proceedings to a close with a lovely poem. It took place in the new theatre at the Portsmouth Grammar School.

There were 300 pupils present as well as former teachers, the headmaster and the deputy headmaster. The money was raised by Camille with the other pupils and some members of staff who were brave enough to submit to having wet sponges thrown at them.”

In Memory of Kallista Heavey When Kallista's father Tom asked his sister Nora to sponsor him and three others for the 8 Bridges Walk, Nora thought it didn't seem enough, so she asked ‘The Minstrel Boy’ to run a pub quiz. By the time they had finished planning, the quiz became a full day of events. Rain called off the pony rides and bouncy castle, but all the local shops donated gifts for auction and to sell on the day. Nora felt a bit embarrassed asking at first, but all gave with kind hearts generously. The BBQ and pub quiz all helped raise the total to £445 in one day; the total raised was £447.17. The local newspaper promoted the event beforehand and shops displayed posters. Nora said "It seemed strange, but the day gave them something positive to focus on after such a tragedy". Nora hopes she can do more in the future. z Debby Heavey (Kallista's proud mum) has forwarded donations totalling £288.70.

In Memory of Reece Goodman "I enclose cheques to the value of £3,864.50.

This money was raised in memory of Reece Goodman. Our beautiful little boy passed away, aged one, after being diagnosed with dilated cardiomyopathy. We were due to race in the Coventry Fun Run on 1 July. Due to adverse weather conditions it was cancelled.

Undeterred, we made our own plans and with the help of Coventry City Football Club and 60+ family and friends, we ran and walked 18 laps of the Ricoh Arena (equivalent to the four mile Fun Run)." Rob Goodman and Lara Daly

In Memory of Laura Moss

z Elizabeth Dziedziczak took part in the London to Paris Cycle Ride and raised £10,446 via Just Giving in memory of Greg. z Further cheques totalling £2,570 have been received in support of Elizabeth and Chris's Cycle Ride. z "Earlier this year, Marks & Spencer successfully bid at an auction at the Retail Trust Charity Dinner for a Corporate Golf Day at Woburn. It was held in October and we raised £11,310 for two charities – The Textile Children's Trust and Cardiac Risk in the Young. I am delighted to enclose a cheque for £5,655. I hope this will help you to continue to do the invaluable work that your organisation undertakes." John Dixon (Director, M&S Direct) 32 | Cardiac Risk in the Young

"I first heard about CRY ten years ago through the tragic death of Laura Moss in Weymouth. This year, with my 50th birthday looming, I thought I would love a party. I put the event to positive use and requested guests to give donations to CRY in lieu of presents and due to my guests' generosity we have raised £1,500."

Maureen Cooke

In Memory of Ben Simpson "Please accept a cheque for £200 from family and friends of Ben, a talented and gifted sportsman who collapsed and died whilst playing hockey in October 2005 at the age of 26 of undiagnosed heart disease. The Ben Simpson Golf Society holds two annual tournaments, one in London and one in Bournemouth, specifically to celebrate Ben's life and to raise money to promote CRY's wonderful work. We will continue to do so until such time that young people are no longer needlessly snatched from us far too soon. We would like to thank everybody concerned for their support and generosity." Penny, Rob and Joe Simpson

www.c-r-y.org.uk

Issue 47

Our Fundraisers In Memory of Simon Hewett

In Memory of Ian Bowen

Mr J C B Hewett sent in this account of his mountain trek on the GR5 from Contamines to Bellentre over 15–17 July 2007. "Following an annual hiking tradition which began some 35 years ago, four old friends set off in brilliant sunshine to find the famous GR5 trail (which travels all the way through the Northern Alps to the Mediterranean) south of Contamines on the western flank of Mont Blanc.

Stewart Overend and Donna Middleton of Barclaycard have sent in a donation of £1,000 in memory of Ian Bowen. z "Please find enclosed cheque for £163 for Ian's Memorial Fund. Chris, Sue, Emma and myself held a tombola in our Morrison's store." Maralyn Bowen z Maralyn Bowen also forwarded a cheque for £100 in memory of Ian. This was donated by Alan Wilkinson from Amec Group Limited. z June Hewitson made a donation of £100. z Glen Shephard and Frank Spencley organised the Burdon Prep Golf Day and sent in a donation of £200. John Noble from Brockway Conveyors sent in a donation of £100.

In Memory of Simon Wilson

Three days and two nights later they arrived at Bourg St Maurice, a couple of hours haul along the Isere River from Ballentre, more or less on schedule, decidedly worse for wear, but otherwise unscathed.

"I enclose the sum of £500 in memory of my son Simon, who died 12 January 2003. He was 28 years old, fit and healthy. He was actually in hospital for six hours when he collapsed and died of cardiac arterial thrombosis. My family and friends gave me donations instead of gifts for my 60th birthday. I hope this will be of some help." Dorothy Wilson

In Memory of Laura Fox A cheque for £2,914 was received from Kate and Robi Fox. The money was in respect of many fundraising events which included Red Cry at Night 2006/2007, the Great North Run and 'Bobby on a Bike'. Also included in the amount were donations from the funeral of Lilian Dunnett.

In Memory of Niall Maclennan We have received a donation of £7,962 from the Accenture Employee Charity Fund.

The decision to go for sponsorship was made late in the day but all four radonneurs are glad they did it, and that they did it for CRY."

In Memory of Stewart Howard Jane Howard has forwarded a cheque for £151, which was donated by the staff at Tesco in Thetford.

Issue 47

In Memory of Andrew Gard "Enclosed is a cheque for £101.61. We raised it by having a family get-together, all bringing food to put on the table. The day was fine so the children could get outside and play on the hall green, while the adults caught up on the latest news. The eldest was 89 and the youngest was three months old." Anita Cleverley (Andrew's Aunty)

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Cardiac Risk in the Young | 33

Our Fundraisers In Memory of Laura Hillier Contributions from family and friends, together with the proceeds from a collection box at Blisworth Surgery, enabled us to donate cheques totalling £468.94. Also included were further donations in respect of events celebrating Shirley and Bob Kingston's Golden Wedding." Tony, Joan and Matthew Hillier

In Memory of Simon Pangborn Mr Keith Bush, the Mayor of the Borough of Surrey Heath for 2006/2007, has donated £1,000 from the Mayor's Charity Appeal. He was delighted that his year as Mayor "afforded him the opportunity to raise money for our very worthwhile and deserving organisation."

In Memory of Martyn Luckett On 15 July, the five of us came up from North Devon for the CRY Bridges Walk in London. We were doing it in memory of our son Martyn Luckett who died suddenly aged 19 in July 2005 from myocarditis, a viral infection to the muscle of the heart.

The walk was a wonderful experience, along with 400 other people all there for their own reasons. We raised between us £8,324. This was me (Brenda Luckett), Charlotte, Nick, Katie Jewell (Martyn's cousin) and Andrew Henderson, Charlotte's boyfriend. On 30 November we had a presentation of the cheque when [CRY Representative] Tim Salisbury came to receive it. The picture shows (left to right) Tim, Katie Jewell, me and Charlotte.

"In August we held our annual Motor Cycle Trials School which was our 16th 34 | Cardiac Risk in the Young

so far. For the last three years we have held it for CRY in memory of Martyn who was a keen motorcyclist himself. Over the two days there were 65 riders taking part in the training. On the Friday evening we had a BBQ with a live band and a big draw. Over the two days, around £2,200 was raised for this very worthy cause.

At the BBQ Joe Baker was presented with the Martyn Luckett Memorial Trophy which he won at the Trial held in July in Martyn's memory." John and Brenda Luckett

In Memory of Claire Keen and Paul Byrne "Please find enclosed a cheque for £620 for the Claire Keen and Paul Byrne Memorial Fund. One of our local football teams holds a charity match every year and this year they very kindly chose CRY as the charity to benefit. The match was played on June with the young ones versus the older ones. We had a great day and they also held a raffle. Many friends play in this team and the deaths of my sister and Paul affected them all so this was their way of helping." Miss Emma Keen

In Memory of Philip Lee Stables "Please find enclosed cheques totalling £1,510.87 in memory of our son Lee Stables. £1,350.87 is for the shark swim and £160 is for the car boot sale." Sharen Stables

In Memory of Matthew Gadsby Donations totalling £1,340 have been received from Les and Russell Cartwright from competing in the Three Peaks Challenge. Their team went under the name of '3 Peaks 3 Brothers'.

In Memory of Alex Roberts Paul and Fiona Roberts held a fundraising day in April in memory of their son Alex. Included in the day's events were a BBQ, disco and raffle.

However, the highlight of the day was Bungee jumping. The amount raised was £5,005.

In Memory of Graeme Blenkinsop "I am very pleased to enclose a cheque for CRY for the sum of £100 for Graeme Blenkinsop's memorial fund. This money includes donations from my work colleagues and money in lieu of not sending Christmas Cards to my close family and work colleagues." Mrs Jan Blenkinsop z Jan Blenkinsop has forwarded a donation of £100 from Mr and Mrs A Seaward in memory of Graeme.

www.c-r-y.org.uk

Issue 47

Our Fundraisers In Memory of David Staff David's father Granville was best man to friends who recently got married. As both had been married before, they requested donations to David's Memorial Fund rather than receiving presents. The amount of £225 was donated. z "Please find enclosed cheques to the value of £440 to be placed in the David Staff Memorial Fund. I lost my 84 year-old mother recently to cancer and it was my father's wish that it would be family flowers only at the funeral, but that if anyone wanted to offer any donations that they should go to David's Memorial Fund.

My mother was a great supporter to CRY, selling raffle tickets locally and buying Christmas cards etc. She will be sadly missed but she is now reunited with her grandson, David." Granville Staff

a great effort to keep in touch and meet up in Sheffield. We all greatly miss Max and wanted to do something in his memory.

We organised an event where we watched The Simpsons Movie (he was a big fan!) then all went out together. Everyone who attended made an extra donation to charity (about 50 people). It was a lovely night and I am really pleased we have been able to raise some money to go towards your work in Max's name. I think Max would have pleased with this choice."

Anne Beeley (on behalf of all Max's friends) z Donations amounting to £255 were received in lieu of floral tributes in memory of Max. z A further £50 has been received from John Heath & Sons, Funeral Directors, in memory of Max.

In Memory of Richard Mason

z "Please find enclosed a cheque for £250 from a recent fundraising event, the David Staff Memorial Fell Race, organised by the Darwen Dashers Running Club." Jonathan Stubbs, Darwen Dashers Running Club

"Once again this year my friends at The Angle Ring Co. Ltd have raised £215 in memory of my son Richard Mason by donating money instead of sending Christmas Cards." Val Mason

z Mr C Riley, Assistant Secretary of the Bank Terrace Lodge, has forwarded a donation of £250 in memory of David Staff.

In Memory of Ryan Darby

In Memory of David Staff and Neil Wickers

Peter Ash took part in the London to Canterbury Bike Ride and raised £915 via Just Giving in memory of Ryan Darby.

Granville Staff forwarded donations amounting to £315. "Andrew O'Sullivan and David Frost are personal friends. Andrew is a keen supporter of the running club that organises David's Memorial Race every year and David Frost lives in Malta, but earlier this year came to England to do the coast to coast walk from St Bede's in Cumbria to Robin Hood Bay in Northumberland." z"Please find enclosed a cheque for £1,052. We raised this at the Autumn/Christmas Fayre. We had good fun and the many children that came enjoyed the toy stall." Irene Wickers

In Memory of Andrew Cannon "Andrew William Irving Cannon, who was very well known in legal circles in Bournemouth, having a major role with the Crown Prosecution Service, collapsed in Court and died most unexpectedly shortly thereafter at the age of 43 years." The family and friends of Mr Cannon sent in donations amounting to £1,503.50 in lieu of floral tributes.

In Memory of Max French "I am enclosing a cheque for £445, raised in memory of my friend Max French. Max died on 2 June 2007. He was 24 and suffered from HOCM, although he did not know it.

Max belonged to a large group of friends who have known each other since secondary school and have stayed close though many of us have moved away for university. We have all made Issue 47

In Memory of Leanne Faulkner Mrs Gay Baker made a donation of £200 in memory of her niece Leanne. The money was raised from a jewellery and craft sale.

In Memory of Jonathan Leigh "A donation of £4,000 was raised by one of Jonathan's football clubs, Carleton FC, through two Sportsman's Dinners. The amount represents a magnificent effort on behalf of Jonathan's teammates and friends, which is another reminder to his family of the warmth and affection with which Jonathan was held."

David Leigh z David Leigh forwarded a donation of £161.91 from a collection at the late David Newbould's funeral. z Isabelle Leigh has sent in a donation of £108 in memory of Jonathan. This money was raised from the sale of bands and badges. z The annual Glynn Davies Memorial Trophy and Castleford and District FA Invitation League events raised £1,585 in memory of Jonathan Leigh. Vivianna Archer-Todde represented CRY and collected the cheque from David Leigh before one of their League meetings at the Vickers Street Working Men's Club.

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Our Fundraisers In Memory of Cheryl Glassborow "Cheryl was our youngster daughter – 19 at the time she passed away, fulfilling her dreams of having reached University at Bournemouth and enjoying a new experience in life. She was a very warm, loving girl whom touched the lives of everybody she met. She always gave and never expected anything in return. We know that Cheryl would have been proud to help CRY continue the necessary raising awareness of your campaign, just as we are. Please find enclosed a cheque for £250, the total sum of donations made from a coffee morning held in aid of CRY and Cheryl's memory to open her Memorial Fund."

Sandra, Ron and Donna Glassborow

In Memory of Harcourt 'Olly' Tucker Stuart Harrison, Pembroke College Junior Common Room Treasurer, forwarded a donation of £100 in memory of fellow student Harcourt 'Olly' Tucker, who passed away on 12 November from sudden death syndrome. Also remembered is student Sundeep Watts.

In Memory of Kim Stacey "Please find enclosed a cheque for £176 which was raised yet again by my students on our annual ‘CRY Fun Night’ which we do every year in memory of Kim." The donation was made by the Hosinsool-Taekwondo Club.

In Memory of Marie Louise King "Please find enclosed a cheque to the value of £500. The money is from donations given on the death of Marie Louise King who passed away on 13 June 2007. She lost a daughter at the age of 14 through sudden death syndrome and her family thought this charity to be the most appropriate." Carole Wood

In Memory of Cecilia Barriga "Please find enclosed two cheques for CRY in memory of Cecilia Barriga. One is from the wonderful concert we held in October in Holy Trinity Church, Eltham. In spite of being in the middle of nowhere, lots of people came. The professional musicians who gave their time free were very enthusiastic and wanted to do it again, so we will think of a more central venue next time. The event raised £1,060. The second cheque for £203 is from the school disco. Cecilia was part of the school and they have been a tremendous support. This year they gave money to CRY instead of sending each other Christmas cards." Eva Barriga z By photographing athletics events during the summer, Mike Fleet raised £210, which he donated in memory of Cecilia. He also sent in another donation of £145 from the sale of photos. z We have received a donation of £200 from Holy Trinity Church, plus another donation of £672.78 from the same church in memory of Cecilia. z "My daughter and I recently took part in the Hydroactive Womens' Challenge and raised £150 for CRY. We ran in memory of Cecilia Barriga." Judith Motto

In Memory of Pete Reynolds Colin Campbell and friends have made a donation of £200 in memory of Pete Reynolds. This money was raised whilst they were on holiday.

In Memory of Judith Krish The Girton Choir held a recital at Danny House on 23 June and raised £174 in memory of Judith.

In Memory of Craig Rampton We have received a donation of £1,189.95 from the Worcester College of Technology in memory of Craig Rampton.

In Memory of David Rossall "On 7 September we celebrated our Golden Wedding anniversary. Instead of gifts we asked our guests to donate to CRY in memory of our son David who died suddenly at the age of 26, 14 years ago, of congestive cardiomyopathy. We are pleased to forward to you the donations of £300 received on our very enjoyable evening." J and M Rossall

In Memory of Sue Powell We have received a donation of £200 from the Great Marlow School in memory of their colleague, Mrs Sue Powell.

36 | Cardiac Risk in the Young

In Memory of Carl Wiggins Carole Whittam sent in a donation of £200. "I am writing to you on behalf of myself and my family, first of all to say thank you for the wonderful work you do for all the families and the parents of children who have been lost to SADS. My son Carl Wiggins died on 29 April 2007 and this is the first chance I have had to write to you. I am sending you a cheque on behalf of Leeds University. This money was collected on my behalf from work colleagues. Leeds University have now adopted CRY as one of their main charities and in future have various collections on behalf of SADS."

In Memory of Hannah McDonogh A donation of £320 has been received via Just Giving and a matched giving donation of £320 has been received via the Royal Bank of Scotland in memory of Hannah.

www.c-r-y.org.uk

Issue 47

Our Fundraisers In Memory of Paul Hindmarch Re: ‘The John Smith's People's Race’ at Aintree.

"Just a quick note to say I have received a letter from John Smiths saying they are now going to donate £1,000 to each of the four people's charities who didn't get to race, for the commitment put in." Janine Patchcott

In Memory of David Gale "Please accept the enclosed donation to your campaign of £200. This is in memory of my youngest son, David, who at the ripe old age of 28 very unexpectedly died of a heart attack earlier this year. The monies form a part of those donated in lieu of floral tributes at his funeral, being given by his friends, relations, work colleagues and neighbours." Bill Gale

In Memory of Richard Whitehead "We opened the house and garden to family and friends and held a horse racing event. It was great as the weather was on our side and everybody came in hats and formal wear – we could have been at Ascot! No appearances from the Queen though.

We also collared a local band to come and play and then finished off with a charity auction and karaoke. Our hard work and planning paid off, and thanks to the continued kindness and support of all those close to us (ooh, and the local pub ‘The Gamecock’) we managed to raise the grand total of £1,242." Jo Bradley

In Memory of Robert Poysor CRY Representative Diane Tolley has sent in donations totalling £275. Of this, £50 was donated by the ladies of Slimming World in Kidderminster, £25 was a birthday present from a friend and £200 was raised from a raffle and car boot sale. z Diane Tolley forwarded a further donation for £188, which was raised locally from the proceeds of a bric-a-brac sale in memory of Robert.

In Memory of Simon Cullum "Please find enclosed a cheque for £100 which was given to me in lieu of flowers on the recent death of my 29-year-old son Simon. As Simon's heart was sent to Brompton I thought I would donate the money to CRY." Marilyn Cullum z St Peter's Parish raised £764.53 in memory of Simon. This money was handed over at the CRY Pathology Launch.

In Memory of Steven Donovan Mrs Lesley Donovan sent in a donation of £2,558. "The money was raised by various fundraising events which were organised

by Katie Bell and Alex Braithwaite and other close friends to Stephen, for who we give special thanks for all their efforts."

In Memory of Anthony Hill Donations totalling £432.40 have been received in memory of Anthony Hill. z We have also received a donation of £347.40 in lieu of floral tributes in memory of Anthony Hill.

In Memory of Andrew Hartlebury "I am writing to you and enclosing a cheque for £1,550. This is for my son's Memorial Fund. His name was Andrew Hartlebury and he passed away on 30 January this year. He was 21 years old.

I hope to continue fundraising in the near future as I think that this is such a worthwhile charity with not enough recognition."

Mrs Catherine Hartlebury

In Memory of Gregory Palmer Janet and Bob Palmer donated £260. "Greg died in 2003 aged 21 of no known cause, despite a post mortem, a cardiology research investigation and a genetic screen. In memory of our son Gregory Palmer on the occasion of his 26th birthday."

In Memory of Stuart Attridge Mrs C Eyre made a donation of £130 at the CRY Pathology Launch.

Issue 47

In Memory of Adam Donnelly "Please find attached a cheque for £150 which is the amount collected by my mother. It was mum's 75th birthday in November and she requested donations to CRY instead of birthday presents." Julie Donnelly

In Memory of Paul Marrs "Please find enclosed a cheque total £650. One of my close friends, Damian Hayes, was running the marathon this year to raise funds in memory of my husband Paul, who passed away suddenly in February 2004 after running on a treadmill in a gym. I raised £650 at a barbecue at my house to show support for Damian. This amount has now been matched by Barclays Bank, increasing to £1,300." Phyl Marrs z Mrs Anna Dasey sent in a donation of £280 in memory of her son-in-law Paul William Marrs. The money was raised at a Dress down day' at her place of work.

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Our Fundraisers In Memory of Christian Thunhurst A donation of £5000 was received from the Under 35's Reinsurance Group. “Along with many people from the market, everyone associated with the Under 35's was deeply saddened by the sudden death of Christian Thunhurst from acute heart failure in Bermuda at the beginning of 2007.

Christian was well known in the London Market and extremely well liked: his exuberance, joie de vivre and outgoing personality made him a very popular figure. Christian had moved to Bermuda during 2006 as the International Casualty Underwriter for Platinum Re. Christian had worked in London for Willis, Eagle Star Re, Danish Re and Wurtt. People at all of these firms remember him fondly, although most also report a significant reduction in their expenses at his departure. The Under 35's was a body ideally suited to Christian's exuberant networking and enthusiasm for travel and entertainment. He served on the committee from 2000 to 2005 and was Chairman in 2005.

Christian's wife Nicola recently gave birth to a healthy baby boy, Dominic.

Nicola has set up an appeal in Christian's name to raise funds to set up a dedicated screening programme for the Under 35's in the London insurance market.”

In Memory of John Marshall Maureen Marshall sent in a donation of £700 raised during a 10 mile walk in memory of John, raised by Maureen and Hayley Marshall, Lee Crosbie and Mark Quayle. A further donation of £250 has been forwarded by Maureen. z "This money is from 'Edge Hill University Sporting Edge Fun Run.' £250 was donated to John Marshall's Memorial Fund."

Maureen Marshall forwarded the above donation.

In Memory of Hannah Turberville "I am Hannah Turberville's uncle and the band I play in (The Electric Jellyfish) recently held a fundraising event for three charities, of which CRY was one. Following this very enjoyable and successful charity evening on 20 October I enclose a donation of £170 for CRY. I know CRY has been a great help to Kay and Chris Turberville and The Electric Jellyfish were pleased to be able to contribute in a small way to the work CRY does." Jeremy Finch z "Nearly 40 local people, including children in buggies and happy dogs took part in an eight mile charity walk on Sunday 25 November. The walkers set off at 9.30am from Breathing Space Spa & Studio (who organised the event) to raise money and awareness for CRY. It was fantastic to see so many people 38 | Cardiac Risk in the Young

turn up to support this wonderful charity which is close to the hearts of many people in our community. A big well done and thank you to everyone who either took part or donated. The walk has raised over £1,500 and will be used in the Coroner's Referral Project in memory of Hannah Turberville."

Michelle Smith, Studio & Events Manager at Breathing Space, forwarded a donation of £1,567.52 from the event. z Mr R M Morris has sent in a cheque for £100 in memory of Hannah Turberville.

In Memory of Julian Wort "Please find enclosed a cheque for £200 for Julian's Memorial Fund. Every year a group of dedicated people called the Woodlanders put on a Music Hall show and many charities/local groups etc. benefit from the fundraising. We were honoured again this year to be one of the recipients and to be given tickets for the show." Shirley Wort z Shirley has forwarded a donation of £410 from Mr K L Aylesbury in memory of his father Frederick G Aylesbury, collected in lieu of floral tributes for the Defibrillator Appeal for Frome Victoria Hospital (Julian Wort Memorial Fund). z "My mum recently celebrated her 80th birthday and had a party.

Instead of gifts she wanted any donations to go to Julian's Memorial Fund.

Julian was her eldest grandson.

My mum is Doreen Spiller."

Shirley forwarded a donation of £170. z Shirley sent in a further donation. "My sister in law, Avril Wort, held a Christmas Bring and Buy Coffee Morning on 3 December at her home and raised the wonderful sum of £229.31. Two collection boxes from Chung Ying and Frome Rugby Club provided a further £52.78 in memory of Julian."

www.c-r-y.org.uk

Issue 47

Our Fundraisers In Memory of Kasia Ber "I arranged a charity night to take place on the 1 February for my best friend Kasia Ber who died just over two years ago.

Kasia was very dear to everyone because she touched every person she knew in one way or another.

Everyone I know adored Kasia because she was a bubbly, funny, adorable person. Kasia died of long QT. Long QT usually affects children or young adults. It is a rare condition of the heart's electrical rhythm.

The charity night was in memory of Kasia but also to raise money for CRY. The night consisted of a hypnotist called David Knight, a raffle with a huge variety of prizes and auction which raised £65 for a signed Newcastle United top. The night ended with a disco which had everyone on the dance floor. The night was a huge success and raised £2127.52. All money will be donated to Kasia's CRY Memorial Fund.

In Memory of Thomas Dominy We have received a donation of £967.22 in lieu of floral tributes in memory of Thomas Douglas Dominy, who passed away on 12 November 2007, aged 20 years.

I would like to say a huge thank-you to my friends Claire Lavery, Stacey Proudlock, Claire Burlinson, Sarah Graham, Jade Jepson and Lucy Foster who were absolutely great. They dedicated their time to help me put the night together. I would also like to thank David Knight, Richard Brown, Gavin who did the disco, Peterlee Leisure Centre and anyone who donated anything towards the night, also CRY for their help sending balloons and leaflets to raise awareness. Without all your kind help the night would not have been able to take place.

In Memory of Andrew Stevens Jacobs UK Ltd has donated £100 in memory of Andrew Stevens.

In Memory of Ian Merchant Barbara and Dennis Merchant have sent in a donation of £100 in memory of Ian.

Due to the night being so successful I hope to arrange a similar event each year, around the same time to raise money for the CRY charity to raise awareness of long QT." Bhana Baker z "Please accept money raised amounting to £362. This was raised by Denise Gutcher who held a sponsored stop smoking.

These are the people who very kindly donated: Biceps Gym (£50 cheque), Geordies Pizza (£50 donation) and £262 from the people of Horden and local businesses. Well done Denise."

Diane, John and Christopher Ber z Diane and John have forwarded cheques totalling £989.50 – £36.50 from Peacocks Stores, £53 from Horden Cricket Club and £900 raised by John's friends at Unipres. z "Please accept a cheque for £305. This was kindly raised by Unipres Golf Society who played a charity tournament at Maften Hall." John, Diane and Christopher z Diane Ber forwarded further cheques amounting to £157 in memory of Kasia.

Issue 47

In Memory of Michael Jeffery “Please accept this donation of £692 raised by holding a charity race night in memory of Michael Jeffrey who sadly died last year doing the Great North Run." Sara Walliss, Stewardess

In Memory of Paul Short "Please find enclosed a cheque for £311.50.

This money was donated by the members of C3 Imaging in Formby, Merseyside, in memory of our son Paul who died on 16 January 2004, aged 30. The money was raised once again by my colleagues putting their small change in a large bottle, which this year was filled to the top. We hope this donation helps you in your campaign to bring greater awareness." Frank and Colette Short

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Cardiac Risk in the Young | 39

Our Fundraisers In Memory of Lee Wilson

In Memory of Brian Lennon

Kevin and Elaine O'Neill organised a children's song and dance performance, 'Dance to the Beat', at the Globe Theatre in Plymouth and raised £4,339.60 in memory of Lee Wilson. Judie Street represented CRY at one of the performances.

In Memory of Ken Greenhough Joan Greenough and family sent in a donation of £250. "My dearest husband died on 30 October 2007 and we received donations from family and friends. We particularly stated that we wanted it to go to CRY because we lost our beloved son on 19 October 1997, aged 29 years, due to dilated cardiomyopathy, something we had never heard of at that time."

In Memory of David Elliott

"I had always planned to do something to support the work of heart charities following the sudden death of my boyfriend Brian Lennon, in 2004 at the age of just 28.

Brian was a passionate and talented cyclist and his unwavering dedication to training for the sport has inspired me to take on the physical challenge of trekking along the high altitude Inca Trail in Peru, which I completed in August 2007 and found

"I attach cheques to the value of £400, which I would like to donate to CRY in memory of my stepson David Elliot, who died in July 2002. The money was raised by family, friends and colleagues instead of a contribution to a collection for a 60th birthday gift for myself. David was a smashing lad, much loved by family and friends alike, who died at the age of 34 years in 2002, leaving a wife and two small boys, then aged 8 and 6 years. He will always be remembered." Eileen Elliot z "Please find enclose a cheque for £100. This money was raised on a stall at the Christmas Fayre of All Saints, on 21 November 2007. Mrs Janis Gilson, a member of our church, supports CRY because of tragic family circumstances involving a member of her family." Elizabeth Bean (Treasurer)

In Memory of Suzanne Taylor Beryl Ewing forwarded a donation of £240 collected in memory of her mum, Connie LloydJones. "My dear mum sadly passed away earlier this month. She will be missed so much by all the family and especially by my dad."

to be an amazing and extremely worthwhile experience.

Leading up to the trek I organized events both in Dublin and in my home town of Widnes, which included a pub quiz, bake sale and a music event. All events were generously supported by family and friends on both sides of the Irish Sea and therefore I divided the money raised equally between CRY and the Irish Heart Foundation. In total I raised £10,800 which exceeded all my expectations." Lynn Foster

In Memory of Phillipa Harbour

In Memory of Stephen Donovan

We have received a total donation of £140 via Ann and Steve Harbour. £114 was collected as part of Steve's retirement gift.

Mrs Lesley Donovan sent in a donation of £2,558. “The money was raised by various events which were organised by Katie Bell and Alex Braithwaite and other close friends of Stephen, to whom we give special thanks for all their efforts.”

In Memory of Steve Tanner

In Memory of Marc Bryce

The Steve Tanner Shield Football Tournament took place on 26 August at Folkestone Sports Centre and raised £890 in his memory.

Donations totalling £100 have been received from Mr and Mrs Bryce in memory of their son Marc.

40 | Cardiac Risk in the Young

www.c-r-y.org.uk

Issue 47

Our Fundraisers In Memory of Anthony Child I wanted to do something novel, and it first started as Land's End to John O'Groats. But after I discovered that had been done on a Cub several times before, it became a 'four corners' run, i.e. the furthest North, South, East and West points of the mainland. From there it was only several pints and a short hop of the imagination and it became a 'do the length of the coast' instead. I'm fairly sure that he (Budgie) would have seen the humour in a sixteen stone, shaven-headed and bearded bloke attempting a 3,300 mile journey around the coast of the British mainland on an 89cc step-through motorcycle.

Parts of the journey I would rather forget. I went through some awful places at times, and of course there was the never-ending pain – mainly extreme numb bum – caused by 10 to 12 hours a day in the saddle. Of course there are parts that were great – the Scottish Highlands were truly great – and the lack of traffic (and congestion) meant I had plenty of time to stop, and still cover loads of miles…bliss. Doing the trip solo meant that minor irritations were often blown out of all proportion. Having someone else along would have meant that those very same minor irritations and problems were remembered as some of the highlights of the trip, i.e. things that could be viewed with hilarity with the help of hindsight. I got home a day earlier than I had planned, as on what was due to be the penultimate day I was so soaked to the skin and freezing cold that I decided to add the next day's ride to yesterday's one. I knew I'd never even get close to dry overnight in a tent and decided to just go for it! My bed was calling me!

the 'summer' we'd had so far, it was astonishing that the weather had been so good – all the way around to John O'Groats, in fact, where it started to go downhill – the only other rain I had was a downpour for about an hour as I crossed the Tamar bridge into Cornwall. On that last day it took me 14 and a quarter hours to cover 382 miles, but I finished the round Britain circuit, and made it home by 10pm!

3,301 miles in all, in 13 days, and I raised £4,518.32 for CRY so I'm well pleased with myself! No major breakdowns either – nothing that couldn't be fixed with the judicious application of duct tape anyway. Now I need to start planning my next venture!" Chris Gordon z Bodyflight Limited also donated £1,000 in recognition of Chris Gordon's fundraising journey. z "We have great pleasure in sending you £1,100 to the Anthony Child ('Budgie') Memorial Fund.

This money was raised by very good friends of ours. Each year since our son died suddenly in November 2004, Janet and Kevin from Rustlin Country Line Dance Club have held a Line Dance Disco to raise money for CRY. This year, on 18 August, we all had a really good night, with lots of dancing and a quiz. We also held a raffle for which we have to thank lots of our friends for their donations of prizes." Angie and Jack Child z Angela also sent in another donation. "I have pleasure in sending you a cheque for £285. A good friend of ours, Ina Cogger, did an abseil back in October in memory of Anthony."

Fortunately my brother had joined me the previous night and was acting as my chase vehicle. Several times during that ride I was almost ready to give up and just find somewhere to sleep – anywhere – but he kept me going. Despite having spent several years with no car and riding throughout the winter (I didn't learn to drive until I was in my early twenties), I've honestly never been as cold on a bike as I was that day. With Issue 47

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Cardiac Risk in the Young | 41

Our Fundraisers In Memory of Paul Leach Jan Leach sent in a donation of £3,400 in memory of her son Paul. "Mally and I have lived in Cleethorpes, North East Lincolnshire, for the past five years. When our son Paul, who still lived in Middlesbrough, died of ARVC in November 2005, friends here rallied round to try and console us. Over the past two years our family and friends have attended various charity functions in memory of Paul in Middlesbrough, so Mally and I decided to hold a charity night here in Cleethorpes to try and raise awareness of CRY. We held the night in 'The Fiddler' nightspot and were absolutely thrilled with the amount of family and friends who supported us. We had an entrance fee, held a raffle, sold name cards and also auctioned footballs and shirts which were mainly donated by Paul's friends in the profession. Thanks to Andy Reid, Stuart Downing, Jonathon Woodgate and Sam Russell. I would also like to thanks artistes Tim Genaro, Gray and Kev Campbell who each gave their time and talents for free. Special thanks to my friend Pat Reaich who helped us make the night possible. The most special thanks go to CRY for screening my other two sons Andy and Chris who were found to have the same condition as Paul and have both been fitted with defibrillators." z Emma McGough took part in a sponsored bungee jump on 16 June and raised £505 in memory of Paul Leach, via Just Giving. Emma sent in a further donation of £631 and her total to date is £1,136.

In Memory of Graham Button Debbie Button raised £155 via Just Giving in memory of Graham.

z Once again the staff held a 'Naff Raff' for CRY. The ladies in the general office always put a lot of work into this and have raised £300 this year. Thanks especially to Mary, Donna, Nicola and Kit."

In Memory of Margaret Ellen Smillie We have received a donation of £154.97 in lieu of floral tributes for the late Margaret Ellen Smillie.

In Memory of Dominic and Barry O'Loughlin Mrs Teresa Simpson has sent in a donation of £100 in memory of Dominic and Barry. z We have received a donation of £1,371 in lieu of floral tributes in memory of Barry O'Loughlin following his very sad sudden death. Barry was an ardent long-time supporter who worked tirelessly in the community to raise awareness of CRY.

In Memory of Sebastian English Paul Armatage took part in the London to Brighton Cycle Race in memory of Sebastian and raised £3,325 via Just Giving and sponsorship from his employer AXA. z "On 27 September 2007 we had the pleasure in organising a small golf day to raise money for CRY and to celebrate Sebastian's life. I have pleasure in enclosing cheques to the sum of £395 and wish the charity continued success in such a worthy cause." Jonathan Brown z Mr and Mrs G Owens sent in a donation of £100 in memory of their dear great-nephew Sebastian's Memorial Fund.

In Memory of Mike Scott "Please find enclosed a cheque for £1,068.78 which Dickinson Dees raised through holding a ‘Dress down’ day and a raffle in its offices. I organised the dress down day in aid of CRY as I went to school with Mike Scott who died of sudden death syndrome.

I know his parents do a lot of work for the charity and by holding the event I wanted to raise awareness of the charity and its work amongst our 900 staff." Alexis Towell z "Please find enclosed a cheque to the value of £340, raised at a charity football match in memory of Mike. Darren and Craig, two of Mike's friends and teammates, arranged a match between Mike's old team versus Kirkdale United, the village team Mike played for. Cheques totalling £430 are also donated from the Great North Run." Marje Scott 42 | Cardiac Risk in the Young

z "Please find enclosed a cheque for £300 from John, Yvonne and Rose Bailey, who are regular supporters." Rupert Hunter zMrs P Owens has sent in a donation of £100 in memory of Sebastian. z Nigel Seddon forwarded a donation of £1,176.42. "Please find enclosed a cheque for monies raised for CRY on our 'Elgin Evenings' last year. We are friends of Rupert and Stephanie Hunter whose son (and step-son) Sebastian English died from a cardiac arrest on the rugby field some four years ago. It's great to hear your voice seems to be getting heard more at both the BMA and in Westminster."

www.c-r-y.org.uk

In Memory of Julie Barr "Enclosed is a donation for £50 in memory of Julie Barr, aged 28 years. As you know, Julie died on 24 April 2005 from dilated cardiomyopathy." Mrs S Barr Issue 47

Our Fundraisers In Memory of Adam Drawbridge "I am writing to give some details regarding the sudden death of our son Adam from heart failure.

Aged just 23, he had obtained a Business Studies degree and was working full time as a financial analyst whilst studying to be an accountant.

He was a rising star in the accountancy world, having been given a series of massive pay rises in little over a year with his employers. He had a life plan and was on track, got the degree, got the job with a big name employer and bought his own flat. Then he failed to turn up for work one day and we visited his flat to find him dead, such a blow. Family, friends and work colleagues all find it hard to believe that a supposedly fit young person can die like that. Worse was waiting weeks for the post-mortem results which showed some minor imperfections in the heart valves, but not in itself sufficient to kill him and it was formally recorded as heart failure. The enclosed cheque for £728 is for donations that we have received". Les and Sarah Drawbridge

In Memory of Malcolm Reed "Please find enclosed cheques totalling £1,919. These funds were raised from the Deloitte Southampton Summer Ball raffle. We would like the donations to be designated to Malcolm Reed's Memorial Fund." Jen Richardson, Senior Manager & Community Investment Champion

In Memory of Carl Ashcroft "Please find enclosed a cheque for £15,908.10 which is the proceeds from our Valentine Charity Ball we held in February this year. A great time was had by all who attended and we hope to raise more money for you in the future, through smaller events." Leila King, Forum Committee, Persimmon Homes, Essex z Please find enclosed cheques totalling £138.50 in memory of Andrew Parr donated by people who attended the recent screening in Preston. The screening was well received – we screened 160 people." Ruth Lowe

In Memory of Alex Buckler "Please find enclosed a cheque for the sum of £300. It is a donation from the JCR of Exeter College, Oxford, in memory of Alex Buckler, formerly of King's School, who died in 2004."

Roger Byfleet

z Karen Reed forwarded a donation of £150. This money was raised at a charity auction held in memory of Malcolm on 17 November 2007.

In Memory of Lisa Johnson Eunice and Carl Johnson sent in a donation of £200. "Please use this gift to further work of screening or education in the medical profession. It is in memory of our beloved daughter, Lisa. She died suddenly on 14 December 2006 from Brugada syndrome. Our son is low risk."

In Memory of Charlotte Wright Karen Jones has forwarded a donation of £1,000 in memory of Charlotte.

In Memory of Andrew Parr Ruth Lowe forwarded cheques totalling £2,000 raised at the Charity Ball at the Barton Grange Hotel, near Preston, in memory of Andrew.

In Memory of David Ian Hunter We have received donations totalling £2,790.70 in lieu of floral tributes in memory of the late David Ian Hunter.

Issue 47

z "Please find enclosed two cheques which are the result of the Ballands Bowmen Annual Shoot on our farm held in September. Once again they kindly had a raffle in aid of CRY and raised £154. The second cheque for £40.29 is donations, sale of pens and ransom money for claiming back lost arrows!"

Rosalind Buckler z Rosalind also sent in a cheque for £144 raised from the proceeds of a raffle held at Ballands Bowmen in memory of Alex.

In Memory of John Thompson "My son John died on 8 October very suddenly.

He had never been ill in his life. The post mortem never gave any cause for his death. He was 42, in the prime of his life. He loved kids, so I am donating half of his collection to CRY and the other half to the BHF." Mr and Mrs W Thompson sent in a donation of £843.36 in memory of their son John.

www.c-r-y.org.uk

Cardiac Risk in the Young | 43

Our Fundraisers In Memory of Katrina Brown

In Memory of Leigh Graham

James Brown took part in the Three Peaks Challenge and raised £1,214.13 via Just Giving in memory of his wife Katrina Brown. z Oliver Reiz successfully completed the London to Paris Cycle Ride and raised £2,805 via Just Giving in memory of Katrina . z “Chubb Insurance recently celebrated its 125th Anniversary. To celebrate we had a day of fundraising events for CRY. We had a raffle, an auction and several departments ran their own events such as a race day, a Wii bowling competition and a music quiz." Melanie Brown sent in a donation of £1,933.16 in memory of Katrina.

"Please find enclosed a Charity Aid Foundation (CAF) cheque for £500. We at Boots the Chemist in Dundee have held two quiz nights which raised an amount of £250 and £400 respectively for CRY. We are therefore very proud to add this £500 to our total of £650, especially since it will help CRY assist other young people and their families in a similar situation to Val and Colin Graham who have fundraised over the years in memory of their lovely daughter Leigh, who died so suddenly in August 2002 aged 25”. Joyce Feret, HR Administrator

z Simon Wood from Chubb also sent in a donation of £3,866.32 in memory of Katrina which included matched giving for a fundraising event to celebrate the company’s 125th anniversary. z "Please find enclosed a cheque for £431.50 for your charity, following our team (Battle of the Sexes) participating in the ToughGuy July Nettle Warrior event." Laura Symons z Michelle Jackiewicz took part in the Michelob ULTRA London Triathlon and raised £900 via Just Giving in memory of Katrina. z Tom Mitchell also took part in the Michelob ULTRA Triathlon and raised £912, via Just Giving, in memory of Katrina. z New Woman Magazine has forwarded a donation of £200 in respect of their interview with James Brown. z We have received donations for Katrina’s memorial fund totalling £1,870 from Tim O'Callahan, who competed in the London to Paris Bike Ride in June in memory of his son Chris.

In Memory of Steven Bicker Ian Lockerby forwarded a donation of £96.20. "I am a teacher in a primary school in Dover, Kent.

A few years ago, my nephew, Steven Bicker, died suddenly in his sleep and the whole family was greatly affected. Steven's brother Gary is currently preparing to undertake a sponsored trek in Peru to raise money for CRY in memory of his brother. I told Steven's story to my class of eight and nine year-olds who decided they would like to raise some money to sponsor Gary and help CRY. The children carried out a sponsored circuit training session, they all worked very hard and were tired out at the end!"

In Memory of Ric Halliday Donations totalling £500 were received from Mrs S Halliday in lieu of flowers from family and friends. Also included were donations from staff, friends and customers of Caseys in Canterbury.

44 | Cardiac Risk in the Young

z "Please find enclosed a cheque for £500 raised at our Quiz Night where once again we had a great time thanks to Joyce, Monica, Gill, and of course everyone who contributed. Awareness was a big talking point as we have had a few young people join our staff and have been asking lots of questions." Val Graham z Val forwarded another cheque for £100. "The cash was given to me to pass on to CRY from Liz Shaw and her friends who work in Asda, Milton of Craigie, Dundee. Liz heard about CRY from her daughter who works in Boots along with me."

In Memory of Graham Cataldo Davis Ms Suzanne Cataldo has forwarded a donation of £300 raised

by Abraham Nash in memory of Graham Lewis Cataldo Davis.

In Memory of David Cochrane Jim Smith forwarded a donation of £685, raised at his birthday party in memory of David Cochrane.

www.c-r-y.org.uk

Issue 47

Our Fundraisers In Memory of Denver Jenkins "Please find enclosed monies totalling £953.50.

Denver was suddenly taken from us on 27 July 2006. The cause of his death was attributed to SADS. The money was raised by me, his brother, by completing the 2007 Great North Run." Martyn Jenkins

In Memory of Susan Mary Vere We have received a donation of £385 in lieu of floral tributes for the late Susan Mary Vere.

In Memory of Stephen Westley Gillian Shield raised £4,145 on the Just Giving website in memory of Stephen Westley.

In Memory of Megan Jane Dicken

z The Farnham Rugby Club Tour Minis Section has made a donation of £300 to CRY. z Geoff Dollard has forwarded a donation of £100 from friends and colleagues at AEA in memory of David Harrop. z We have received a donation of £975 in lieu of floral tributes in memory of David. We have also received further donations totalling £200 from David's colleagues and friends at AEA.

In Memory of Becky Heathcote "Please find enclosed cheques totalling £450 to be paid into the Becky Heathcote Fund. The monies were raised at my 50th birthday, instead of presents – a much better use of the money.

Becky died from SADS exactly a year ago and she would approve of the charity." Kate Heathcote (Becky's mum)

In Memory of James Paterson

"Please find enclosed cheques for the amount of £581.90 in memory of 'our precious daughter Megan Jayne Dicken.' Megan tragically fell victim to myocarditis on 23 May 2007 aged 7 months and 23 days. We hope the money will help with your research to prevent other families having to go through the pain and heartache that we are all going through." Jayne, Karl and Ellie Dicken

In Memory of Nathan Jennings "Yet another year has passed since we lost Nathan and again we held a charity day in midKent for all his friends. The entry was fantastic and raised £1,300. Like last year we are going to donate £50 to the Captain's chosen charity, the local hospice for children as a small 'thank you' to him and the club for their support of Nathan's Day." David and Jenny Jennings sent in a donation of £1,250 from Nathan's Day.

Alastair Paterson has sent in a donation of £500 in respect of the Bereavement Support Day, held at Wimbledon Golf Club, on 27 October.

In Memory of Dean Henderson “I am extremely pleased to enclose two cheques to the total value of £970. This was raised over the Christmas period and donated

by ROMAG in memory of my son, Dean Henderson, who tragically passed away in August 2005 at the young age of 15 due to hypertrophic cardiomyopathy. Dean's stepdad, David, works for ROMAG and over the past few years they have held raffles to support CRY. We both greatly appreciate their donations and I know that CRY will put the money to excellent use." Deborah Anderson (Dean's mum)

In Memory of James Litchfield

In Memory of Gareth McDonald

LB Plastics Limited have forwarded a donation of £178 in memory of James Litchfield.

Joannha Sheppard, Clifford Chance Law firm, sold Christmas cards and raised £162 for Gareth's Memorial Fund. This money was matched by Clifford Chance and the total raised

In Memory of Alaina Taylor Mrs Sonya Taylor sent in a donation of £110 in memory of her daughter Alaina.

In Memory of David Harrop "Our friend and colleague David Harrop died suddenly a month ago after collapsing during a rugby match. His family has requested donations in memory of David to be given to CRY".

Lisa Constable forwarded donations amounting to £380 from colleagues at Defra who worked with David.

Issue 47

was £324.

In Memory of Luke Somerville "The money was raised from the profits of our 'two man show', Sibling Rivalry, which was a fun evening of silly festive rhymes (and a free pantomime!) performed by myself and my sister Clare Bevan. A great time was had by all, especially by us, it was brilliant fun! I have chosen to support CRY again as our dear friends Sean and Judith Somerville sadly lost their son Luke to an undiagnosed heart defect three or four years ago."

Nigel Smith and Clare Bevan

www.c-r-y.org.uk

Cardiac Risk in the Young | 45

Our Fundraisers In Memory of Katie Hayes

In Memory of Paul Sykes

Alan Quinn has raised £4,634 via Just Giving in memory of Katie Hayes.

In Memory of Jenny Finney "Please find enclosed cheque for £100. The money has been raised by personnel from the Portsmouth Naval Base, coming out of profits from the Jago Road Training Centre tea funds and from a charity book sale." Val Jenkins

In Memory of Louise Worth "On Friday 19 October 2007, my daughter Louise would have celebrated her 21st birthday.

On Saturday 20 October, we held an 'Open House' from 3 o'clock and invited family and all her friends to celebrate her life, share memories and remember what a bright and loving young woman Louise had been.

Some of her friends came home from university especially for the day. The day was fine and warm even though it was October. The house was decorated with photographs of Louise from birth to the last day of her 17 years and 8 months and was full of not just sadness that Louise was no longer with us but with joy that we all had been privileged enough to have known her. There were some tears, but mainly laughter as we recalled the times we spent with her and what a clever, witty, sparkling girl we were missing so much. Later in the night candles lit up the garden and the chiminea kept everyone warm as we listened to the music that Louise had liked and to songs that reminded us of her. What could have been a very difficult day was made very special by being surrounded by all the people who knew and loved my beautiful girl. Donations were made to CRY in lieu of presents and I enclose a cheque for £271 to be added to Louise's fund." Sue Jarvis

In Memory of Leon Ashley Manners

In Memory of David Eastty "I enclose a cheque for £100 from the Billericay Folk Dance Club. Last Saturday we held our Annual Dance with raffle and as usual we agreed to contribute to a charity. This year one of our members, Linda Eastty, asked if we would support your charity, which we were glad to do." Pam Langridge (Treasurer)

In Memory of Adam Morris "On 11 February 2007 we lost our son Adam.

Adam died at our local hospital of viral myocarditis. Up until this time he had been a healthy, 21 year-old. When he was at school he played every sport, then worked outdoors for the past five years. Adam was a popular lad. He enjoyed himself whatever he did. When Adam laughed, everyone laughed with him. Losing Adam is a big loss to us, his family, and his friends. We would like to see more done to raise awareness of this type of illness. Adam's aunt held a raffle at work and raised £207, which they are donating to CRY. We, Adam's family, would like to thank the staff at BES Ltd for help in raising this money." Teresa Morris

In Memory of Alun Mardon

"I enclose a cheque for £2,162.

This amount was raised on 8 September at an all-day Salsa extravaganza at Redcar Bowl. With four hours of dance workshops in Salsa, bachata, cha cha cha and belly dance, followed by an evening Salsa Ball which provided spectacular bellydance shows, Riverside Display Team shows and singers Dean Wilson and Adele MacFarlane. We had such a ball! The day was a huge success and was enjoyed by all who attended." Could mention be made and thanks be given to all those who helped in making the day as successful as it was, from family and friends to the dance teachers who travelled across the country to help out in this fantastic event. Thank you to them all." Julie Hatton 46 | Cardiac Risk in the Young

"You may recall that last year we were able to forward a donation to you after the winners of our annual football competition, St Margaret's FC, nominated your charity to receive a share of the total proceeds. That nomination followed the sudden death of Paul Sykes in 2005 whilst he was playing football at Folkestone. Not only did St Margaret's retain the trophy earlier this year but, as the winners, they have again nominated you as their chosen charity so I am very pleased to be able to send you a further £200 donation towards the cost of your most worthy work." Geoff Wickens (Hon Secretary)

"Please find enclosed a cheque for the value of £2,000 in memory of Alun Mardon. Alun was aged 25 years when he collapsed and died when playing a game of rugby for Wattstown RFC on 14 April 2007. The cause of death was later found to be a blockage in the cardiac arteries. We were unaware that Alun had any heart problems as he appeared to be a fit and healthy young man and his death came as a great shock to his wife, family, friends and all members of Wattstown RFC. The donation is the proceeds of functions held in Alun's memory by Wattstown RFC who have worked tirelessly to be able to make such a substantial donation." Robert O'Flaherty

www.c-r-y.org.uk

In Memory of Vicky Johnson The Just Giving website in memory of Vicky Johnson has raised a total of £135.

Issue 47

Our Fundraisers In Memory of Alain Nin

In Memory of Ben Harban

"It gives me great pleasure to present CRY with a cheque for £1,500 in memory of my brother Alain who died on 17 April 1999. I am so grateful to CRY for their support when I needed it most and for all the hard work they carry out on a daily basis to support families who have been affected by a sudden loss as well as raising awareness of this silent killer all around the country.

My brother Alain died at the age of 28, just six days away from his 29th birthday. Alain was a great athlete, tall and strong, he loved playing rugby and played in the Sunday league for a local team in Paris where he lived. He was also an official referee.

He ran several marathons, he did cycling, swimming and played Handball. Alain was always on the go and never complained of any pains or any heart problems – he had no symptoms. He was fit and healthy.

But on Sunday 17 December, while playing rugby, he collapsed and died instantly. The post-mortem showed that he was suffering from arrhythmogenic right ventricular cardiomyopathy (ARVC). It was a devastating shock to all the family and it has taken us many years to recover and for the pain to ease. Alain had such a great personality, always laughing, joking, he was so popular with his friends and colleagues – he has left a big void. A day does not go by without me thinking of Alain and there is always a sad note when come the big events such as Christmas, New Year and birthdays. Following Alain's death, my older brother, who is 45, was diagnosed with ARVC and is on Beta Blockers and my children are being screened on a regular basis. I would like to thank the 'Friends of Golders Hill School', parents and children who helped raise this incredible amount of money for such a worthy cause, and I thank CRY for their continuous hard work and support." Marlene Ziu

In Memory of Sarah Simpson Colin Simpson has forwarded donations totalling £1,757.03. This money was raised from a Charity Netball Match in memory of Sarah. z We have received a further £735 made up of various donations, including further netball sponsorship money, church collections, and CRY's share from The Mirror newspaper article of 21 November.

In Memory of Tom Layton "The enclosed donations totalling £500 were collected for CRY in memory of my dear son Tom. He was intelligent, good-looking and a great golfer with a bright future ahead of him when he died, aged 19, totally unexpectedly with HCM. We miss him terribly, he was great. At my recent 60th birthday party I asked for donations to CRY and my generous friends gave gladly to help you continue your work. Tom would have loved the party!" Jenny Layton Issue 47

"We have enclosed cheques from donations made to CRY on behalf of our late son Ben Harban, aged 22 years, who died suddenly on 24 March 2007 from sudden cardiac arrest. I hope this will go towards helping research." Gill, John Harban and family sent in a donation of £278.92 in memory of Ben.

In Memory of Daniel Larkin "Please find enclosed a cheque for £1,166 towards your ongoing work. An employee made us aware of the work you are carrying out in the area and we hope that this will go a little way to help you achieve your aims." Janet Webb, on behalf of Sony Computer Entertainment, Europe z Patricia Larkin organised the Wirral Coastal Walk, football match and an evening with music and raffles in memory of her son Daniel. These events raised £223.

In Memory of Mark Phelps "Please find enclosed a cheque for £300 on behalf of Coleshill Operatic Society. I was a member five years ago and enjoyed the musical shows they put on. Unfortunately my son died in November 2002 of sudden death syndrome and from this point my life changed forever and consequently I couldn't do any more shows. This was so unexpected and I had never heard of this condition before. He was 25 years old and a very fit person, played football, golf and went to the gym. Every year Coleshill Operatic Society chooses charities to support when putting on their shows and asks members for nominations.

If this money can be used to help another young person to be screened for this, then it will prevent another family going through the heartache that we have had to endure and still are." Dawn Fitzmaurice

In Memory of Stuart Cave "We are fundraising for a screening in memory of Stuart Cave who died last New Year's Eve (2006). Stuart’s family do not want to be a part of it so, as we are working closely with Ruth Lowe, we would like the money to go into her son's fund (Andrew Parr Memorial Fund). I enclose a cheque for £2,000 which has been raised as part of my Mayoral Charities for this year – I am supporting CRY and Preston Women's Refuge, two worthwhile causes. We have had a Casino Night and a Fashion Show in which my daughter Ruth and I modelled." Christine Abram (Mayor of Preston) z A further donation of £547 has been forwarded which was raised during the 2007 Bridges Walk.

www.c-r-y.org.uk

Cardiac Risk in the Young | 47

Our Fundraisers In Memory of David Quinney

In Memory of David Williams

"Please find enclosed cheques to the value of £300 – late donations to Mick's marathon run in memory of David. We just can't believe the generosity of so many people." Mick and Dot Quinney z Mick and Dot sent in another cheque. "Please find enclosed a cheque to the value of £500. This most generous donation came from our neighbours Mr and Mrs Dale Hackett, from their hotel's charity fund, in memory of our son David Quinney."

“It was all very spur of the moment. I got a call from Sue at the yard who asked me would I mind them doing a five mile sponsored ride around the yard in memory of my son David who died on 14 August 2005.

In Memory of Deborah Barnes Dawn Platt raised £1,070 via Just Giving in memory of her sister Deborah Barnes.

In Memory of Mark Pover Stalybridge Celtic Junior Football club have sent in donations totalling £300 in memory of Mark Pover.

In Memory of Edward Reading We have received donations totalling £560, in lieu of floral tributes, in memory of Edward Stephen Reading who passed away on 23 July 2007. z "Earlier this year Ed Reading, the son and the brother of two of our staff, tragically died and we therefore enclose our donation in the sum of £150 in Ed's memory." Mike Willenbruch, Parnell Design Partnership LLP z Oaklands RC School has sent in a donation of £500 in memory of Edward Reading.

In Memory of Matthew Moody Leon Moody has now sent in donations totalling £312 to CRY in memory of his son Matthew Moody by selling books at Kingham Station in Oxon.

In Memory of Richard Kitching Capital One held a fundraising day and raised £120 in memory of Richard Kitching.

48 | Cardiac Risk in the Young

My daughter Lisa and I were delighted and deeply touched. On the day, the younger riders set off first with two Shetland ponies and several 'mums' leading the ponies. They were followed by the riders who wanted to canter or gallop around the farm. The more laidback walked the five miles, with several people also on foot. Fiona's horse 'Bubbles' had only just come back into work after a long injury but she was determined to ride him and Bubbles was such a good boy!

Everyone worked so hard to make it a success, with teas, coffees, cakes and also certificates, rosettes and even medals! It was really such a lovely thing to do and my daughter Lisa and I are extremely grateful for everyone's generosity and kindness.

A big thank-you to Sue and Avril who organised the day and to Lucy and her mother who allowed us to hold it on their farm. I believe the ride was a great success and raised £500 for David's Memorial Trust Fund. I would encourage anyone who is reading this to have a go at a charity event for CRY. Although it will never bring David back it does help to know that I am making others aware and raising funds for a worthy cause. Please do check out the CRY website and let other people know about the screening that is available, it may just save a young person's life. Thank-you everyone!” Sue and Lisa Williams

www.c-r-y.org.uk

Issue 47

Our Fundraisers In Memory of Charlie Morettes

arranged by our friend Colin Osborne. It was very hot and 50 people turned out to play in Charlie's memory. After the golf everyone finished with drinks and dinner, not forgetting the auction and raffle. The day raised £2,145.

Allison Spalding sent in a donation of £1,720 in respect of ‘Sleep Well Tiger’ and £542 for ‘Silence is Golden’. This makes a total of £2,262 for both events. z Karen Birch took part in the Experian Robin Hood Half Marathon and raised £1,195, via Just Giving, in memory of Charlie Morettes. z In December 2007 Allison Spalding forwarded cheques totalling £2,712.50 which were donated by various people and organisations in memory of her son Charlie. In January she forwarded a further donation of £5,845.30 from various fundraising activities throughout the year in memory of Charlie. z PM & KJ Abrahams have forwarded a cheque for £310 in respect of Sleep Well Tiger.

A fundraising six months in memory of Charlie “In the six months after Charlie's death on 16 May 2007 at the age of eight, many fundraising events have taken place and we have managed with the help of friends to raise over £30,000.

On 24 – 28 June, Mrs Randall, Charlie's teacher was sponsored to take part in the opening dance at ‘Chance to Dance’ at the Sevenoaks Theatre. Along with buckets placed in the foyer each evening, Mrs Randall raised an amazing £2,000.

On 12 – 16 September, Tony (Charlie's dad) rode from Blackheath, London, to the Eiffel tower in Paris. Tony and Charlie went on many a bike ride together and Tony felt this would be a fitting tribute for Charlie and took on the huge challenge. We were all so proud of him when he arrived in Paris. He also raised a huge £10,367! Also on 16 September our good friend Karen Birch ran the Nottingham Half-Marathon and raised £1,195.

On 25 October, Louise Gunyon, one of the most talkative people you could meet, held a 24 hour ‘sponsored silence’. For Louise this was a huge achievement, which raised a total of £1,100.

The final event of the year was the 'Tiger Ball' on 3 November at the Thistle Hotel Brands Hatch and attended by 260 guests.

We always called Charlie 'Tiger' so this seemed a fitting name for the ball. Everyone looked amazing in their tuxedos and evening dresses and all the guests got a CRY wrist band as their table gift. The room looked amazing with CRY Balloons as the table settings. We received some very generous donations from people such as Graham Norton, David Walliams, Arsenal Football club and Debenhams. The evening was really successful and raised £12,000.

On 7 July Sutton-at-Hone Primary held their Summer Fête and had a Balloon release for Charlie. Everyone got to write a message to Charlie on their balloon tag. The balloon that went the furthest won a prize of a balloon flight – the furthest balloon made it all the way to Germany which was quite amazing. The event raised £745. On 7 August the first 'Tiger Cup' was held at Redlibbets Golf Course. The day had been brilliantly Issue 47

2008 looks to be just as busy. In just the first few months we have a parachute jump, the local dance school is holding a sponsored event, there is a 'Dress down day' to be held by Barclays, bag packing at Sainsbury's, the London Marathon and of course another golf day (one in the south and one in the north). There is the first 'Tiger Ride' and The Tiger Ball 2.

Who knows what this year will raise?” Allison Spalding

www.c-r-y.org.uk

Cardiac Risk in the Young | 49

Our Fundraisers z Cheques totalling £4795.84 were received from Win Tennis from their Gala Dinner. The amount represented 25% of the profit from the evening. This was their first event, and they are more than pleased with the whole evening, and are looking forward to next year.

z Mrs Malti Maini has sent in a donation of £1,000 from the sponsored walk arranged by the Hindu Temple on 1 July.

z "I have pleasure in enclosing the following cheques: £300 from East London Ladies Darts League and £170 from ourselves. Many thanks and keep up the good work." Pearl Ellice z Chris Wakefield sent in a donation of £125. "My latest Summer Quiz raised just under £250 and I pledged half of this to cancer and the other half to CRY. I hope you are enjoying the new challenges. I have read the last two news magazines and it seems as if awareness is increasing rapidly." Chris Wakefield z "HSBC Collections & Recoveries have held monthly 'Dress down' Fridays for a number of years to raise funds for special charity days and one-off disaster appeals. Helen Bancroft nominated CRY and I am pleased to enclose a cheque for £107." Sue Appleby z Lynda Temple forwarded donations totalling £130 in lieu of alterations and embroidery carried out by Eddie Farrow. z "Please find enclosed a cheque for £2,325.63 for your charity which is part of the proceeds from a concert we promoted at Salisbury City Hall on 28 October 2007." Robin and Lydia Gair z "I have pleasure in enclosing a cheque for £158 raised at a Christmas Coffee Morning, Buxted Park Cricket Club. Also enclosed is a donation of £10 from Mr Cottingham." Colleen Fry z "Please find enclosed a cheque for £220. The money was raised at an annual darts event at the Wheel of Fortune Public House in Alpington, playing for the Bob Baldwin Memorial Cup. The money came from the entrance fees and by holding a raffle. A great evening was had by everyone but at the same time raising money for a great cause. Keep up the good work."

Christine Bloomfield z 'Ladies Day at Windlesham Club' raised £260 by members watching racing on the big screen and donating a percentage of the bets made on the races. z The Rotary Club, Sutton, held an evening of Q&As with the Mayor of Sutton as Guest of Honour. A collection of £200 was received in donations. Rob Thorne represented CRY. z"[CRY Patron] Kathryn Harries performed a concert at our church on 27 October and asked that part of the proceeds be sent to you as a donation to CRY. I therefore enclose a cheque for £500 which comes with our very best wishes." Gavin Gordon, Treasurer 50 | Cardiac Risk in the Young

z Timothy Brayne, Treasurer of The Sportsman Club, forwarded a donation of £184. "As a club we have a Christmas dinner once a year and invite a guest related to the sports world to speak to us about their experience and we hold a raffle where the proceeds are donated to charity. Sometime ago we had David Richards to speak to us and he asked for the money to be given to CRY." z CRY Representative Tim Salisbury sent a cheque for £306.76.

"This was raised by the Redruth Market Traders during the CRY awareness week. Hope all is going well." z Mr S Higgins from the Saturnian Lodge in Berkshire has forwarded a donation of £878. zSharlene Brown has sent in a matched giving donation of £1,086 from the Abbey National. This makes a total of £2,172 raised at their 'Dress down day'. z "Please find enclosed a cheque for the sum of £537 which represents the money we raised from our recent fundraising event at our site in Solent for your charity." Lynne Box, Abbey Plc z Lorraine McTear has sent in further cheques representing sponsorship for the Great Wall Discovery Challenge, making the total to date of £2172. z Clare Walsh forwarded a donation of £795. "Please find enclosed donations collected at our son's baptism." z Rob Fairweather has sent in a donation of £372.06. z Clare Carter sent in a donation of £115 after successfully completing the Hydro Active Women's Challenge.

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Issue 47

Our Fundraisers z The Sovereign Public House forwarded a donation of £160 raised during their Quiz Night. z Sarah Butler, Harlequins Rugby Club, arranged a Match Day collection and raised £341.95. z "When I was twelve years old I got cardiomyopathy, probably caused by myocarditis. I was lucky and although it took a long time, my heart eventually mended itself and I recovered.

I am now 34 years old and on 1 June this year I had a baby boy, Cameron Lewis. No-one believed I would survive, never mind to go on to lead a normal, healthy life and have a baby!

I appreciate how lucky I was and understand that others have not been so lucky. This is why we took the decision that, instead of having christening presents for Cameron, we asked for donations to CRY. We therefore enclose cheques to the value of £245. If we have a preference we would be grateful if you use the money towards the screening programme."

Janet Beesley-Iddon z At the New Year's Day concert by St Alban's Symphony Orchestra in the Cathedral and Abbey Church of St Alban, a voluntary retiring collection made a total of £701. A donation of £350.50 has been forwarded to CRY by Mr John Cox. z Mr Hecker has made a CAF donation of £100 to CRY. z The Pool KO competition held at the Wheel of Fortune Public House in Norfolk raised £111. z Dave Lawrence ('Three men in a boat') sent in a donation for £336.28. Dave Rothwell (Awards Evening) has sent in a donation for £335.96. z "Enclosed is a cheque for £250. Two of our ladies have lost their grandsons due to mysterious deaths and we hope you can achieve the best possible by way of your research." J Hewell z "I am writing to enclose a cheque amounting to £540, following fundraising at our Ladies Masonic Lodge Festival evening, held on 12 May 2007. The whole evening was a wonderful occasion and our fundraising for the night has been donated to CRY." Lynda McClure zColin Mathewson from Osborne King Commercial Property Consultants sent in a donation of £500. "This Christmas we nominated CRY as our chosen charity instead of posting Christmas cards to our clients." z Mrs Joy Dyke sent a cheque for £3,000 as a donation to ‘a very worthy cause'.

z Mr Paul Dransfield of the Jardine Lloyd Thompson Group has sent in a donation of £500. They recently held a Health and Wellness day and were able to give CRY the opportunity to profile the contribution it makes to the wellbeing of children. z Mr J Rosier donated £211. z A donation of £126.14 was received from the Groupama Insurances. z Mr David Bentley sent in a donation of £250. z The Premier League has donated £2,000 to CRY. The nomination came from Middlesbrough Football Club. z Mike Vandenberg took part in the ‘Pram Race’ and raised £775 via Just Giving. z Stephanie Hill has sent in a further donation of £210. She has already raised £650 via Just Giving. This makes a total of £861 raised during the Bristol Half-Marathon. z For the celebrity edition of Who Wants to be a Millionaire?

Connie Hyde nominated CRY to receive a donation of £500. z"I am writing to you on behalf of the York St John Students' Union Netball Club. We have carried out a bag pack to raise money for the CRY charity and enclosed is a cheque for £425.51 which is the amount of money we have raised. We thoroughly enjoyed raising money for your charity and hope to work with you again in the near future." Cara Petch (Club Captain) z Dominic Mackenzie took part in the Three Peaks Challenge and raised £232 via Just Giving. z Rachel Hewitt took part in the 2007 Hydro Active Women's Challenge and raised £265 in memory of Adam Donnelly. £200 of this was donated by Pye International Limited. z Christine Hibbs first took part in a 20 mile walk and raised £1,000. "The build-up began about a month ago. I started off by walking 10 and a half miles and did about two to threewalks. I am planning a 30 mile walk next." Christine did take part in a 30 mile walk and raised £100.10 for CRY. "On the day of the walk I started at 8.30 in the morning and headed to Ribchester by speed walking. From there I went on to Longridge, Clitheroe, Pennines and Whalley. As I approached the hospital, this was it. A full 30 miles in 10 hours. I hope other readers enjoy reading this."

z Amanda Ryan has sent in a donation of £120. z Stephen Button sent in a donation of £246.

Issue 47

z Partnership in Care donated £100.10 as matched giving, to take Christine’s total to £200.20. www.c-r-y.org.uk

Cardiac Risk in the Young | 51

Our Fundraisers z "The Royal Bank of Scotland Group and the Daily Mail launched a joint campaign in November to give £1 million to UK children's charities at Christmas. Daily Mail readers and RBS staff have been voting in their thousands to nominate their favourite UK children's charities, from which 90 charities have been selected to receive RBS 'Children's Charity Awards'.

I am delighted to advise that your organisation is one of the 90 charities who were voted to receive a £10,000 Award, and your cheque is enclosed with this letter. I hope this donation will help your charity to continue the valuable work you do."

Stephen Moir, Head of Community Investment

z "Please accept our cheque for £250 as a donation to your charity." Adam Brosnan, Brosnans (Chartered Accountants)

z Paul Deane has sent in a donation of £577.

z “Please find enclosed a cheque for the amount of £201.60 on behalf of Bain & Company. Bain believes that CRY is benefiting the community and we hope our contribution will give support one way or another." Victoria Squire, Bain & Co. Inc.

z Mrs Platzer sent in a donation of £100. "I recently celebrated my 80th birthday, and all my family contributed towards funding CRY instead of buying me presents." z The King John's Tavern in Tewkesbury has sent in a donation of £566.78. z Mark Young has forwarded a donation of £100.

z "Please find enclosed our sponsor money following the 2007 Newtown Dial-a-ride Santa Run. We raised £220 in total. Half of this amount had to go to dial-a-ride. We are proud to enclose a cheque for £110." Mr and Mrs K Brierley z Steve Whyte successfully completed the Channel Swim and raised £1,097.60. z Sophie Rauf took part in the Hydro Active Women's Challenge. She has sent in her final donation of £480 raised via Just Giving.

z "As a result of a recent charity event at our organisation we managed to raise £137.50 for CRY. From everyone at Hewitt Associates, Epsom." Saneer Shukla

z Mr Allan Rich has forwarded a donation of £7,500.

z A donation of £189.83 has been received from Cross Heath Methodist Church, Newcastle, Staffs. "The money was raised by collecting from the Congregation at our Christmas Eve Service. We trust this will assist in your funding and we wish you well as a charity dedicated to a cause close to our hearts at Cross Heath Church." John Bowler (Treasurer)

z The members of The King’s Norton Society held a carol singing evening and raised £150.

z Hanson–Chipping Sodbury Social Club held a charity Quiz Night and raised £115.

z The British Cardiac Patients Association (Llandudno area) made a donation of £500 during their Christmas Dinner, which was held on 11 December. Sandra Armstrong kindly collected the cheque on behalf of CRY.

z "Each year the Ashtead Choral Society holds a ‘Carols for Charity’ morning in the Ashtead Peace Memorial Hall and we always nominate two charities for our annual donation. I am pleased to say that Cardiac Risk in the Young is one of the charities which has been chosen this year and I have much pleasure in enclosing a cheque in the sum of £415 towards the very good work which you perform." Graham D Parkin (Treasurer)

z Llantwit Fadre Sports Club held a fundraising event on 8 November and raised £873.50.

z "Please accept the enclosed cheque for £2,044.50 which has been donated from the proceeds of our staff Christmas savings scheme. Many staff save for Christmas throughout the year, and rather than pay interest to individuals, it is agreed that the company makes a donation to CRY. The beneficiaries are chosen by one of the savers, and this year David Donkin from our Die Maintenance department elected CRY. We are confident that this money will be put to very good use in helping your organisation to continue its excellent work." Sharon Rowntree, Unipres (UK) Limited z "Every year, the staff of Smith & Williamson are invited to nominate charities to receive a donation from the firm. I am pleased to inform you that your charity has been nominated for a donation this year and I have great pleasure in enclosing a CAF cheque for £500." Nick Osler 52 | Cardiac Risk in the Young

z Joe Suggitt sent in collection boxes from his girlfriend's 21st birthday party and raised £105.88. z "As mentioned on the telephone to one of your colleagues, I have chosen to support CRY during my year as the Ladies Captain at Stoke by Nayland Golf Club. All the ladies have been very interested in the charity, some of them had heard of it, and plenty hadn't, but all are keen to support it. " Joan Landen sent in a donation of £821.20 z George Risby sent in a donation of £150 to CRY. z Mr G Barclay donated £1,000 from the Bridges Walk 2007.

www.c-r-y.org.uk

Issue 47

Our Fundraisers in Northern Ireland In Memory of Aaron Lundy

In Memory of Richard Martin

The Edinburgh 26.2 Mile Marathon was run by Jon Trolan of Portstewart, County Derry, Northern Ireland in memory of his friend Aaron.

Jon raised £1305.

In Memory of Proinnsias McElhill Helena McElhill forwarded cheques amounting to £1,834 in memory of Proinnsias. A donation of £140 was also received from Helena. z "For the past number of years the Moss family present a Christmas Wonderland Scene by lighting up their home during the Christmas season and inviting people to come and view. A large number of schools, groups and families come to see this spectacular scene and each year the monies raised goes to charity. This year Marie and her husband Liam and son Jason chose three charities and CRY has been named as one of their choices." Helena McElhill sent in a donation of £850.

In Memory of Jaimie Gault Mrs Margaret Gault has sent in cheques totalling £1,220 in memory of Jaimie. £1,095 was raised by the Larne & District Masonic Charities Committees by serving an early Breakfast Morning and £125 was raised at Margaret's 40th wedding anniversary. z Margaret Gault has sent in a further donation of £320 raised at the 2nd Ballyeaston Presbyterian Church Craft Fair.

In Memory of John McCall "I am writing to enclose a cheque for £100 as a donation to the Northern Ireland Fund for CRY in memory of our nephew John McCall. Thank-you for the important work you are doing to raise public awareness of sudden death in so many young people."

Janette and Malcolm Pollard

In Memory of Mrs Ann Dobbin Mrs Brown, the Principal of Gibson Primary School, Omagh, has sent in a donation of £1,000 from fundraising at the school. This is in memory of Mrs Ann Dobbin, who died suddenly from cardiac abnormalities.

In Memory of Lauren Gallagher "Further to previous correspondence please find enclosed a cheque to the value of £120 towards CRY. This amount has been 'change' collected by ourselves at home. Laura's second anniversary is on 22 February, so we are thinking of that." Blanche Gallagher Issue 47

Paul Martin from Irvinestown, Co Fermanagh, received a cheque for £4,770 for CRY in memory of Richard Martin. "Trillick and District YFC recently completed a Tractor Trek around Northern Ireland in aid of the MS Society and CRY. We are delighted to have raised £9540.04 which we divided between the two charities." Pauline Armstrong, Vice President Trillick and District YFC z Raymond Martin sent in a cheque for £2,600 in memory of Richard. "The money was raised during a steak barbecue fundraising event which took place on 17 August at the Anglers and Fisherman's Sporting Club in Ballinamallard, Fermanagh.

Approximately 100 people attended, each buying BBQ tickets worth £10. It was a successful event attended mainly by family and friends of my brother Richard Martin, who died in November 2004 of WPW syndrome." z Mary Martin has forwarded a cheque for £600 in memory of Richard. This was raised after Richard's cousin, Katrina O'Reilly, climbed Ben Nevis in September.

z Quarry Products Association forwarded cheques totalling £276.25 from member companies Kilwaughter Chemical Co. and FP MCCann Ltd. z Martin Duffy has sent in a donation of £280 raised during the Lap of the Lough. This was a team event. z A further donation of £2,380 has been received via the Just Giving website for the Lap of the Lough z "Two relay teams from the Irish Football Association ran in the Belfast City Marathon on Monday, 7 May. The reason for nominating this charity was that it had highlighted the sudden and unexplained deaths that occurred in elite athletes and those involved with this charity undertook their work purely on a voluntary basis. We agreed this was a cause most worthy of our support." Via John Lundy z Mr McQuitty, Honorary Secretary of the First Ballymena Presbyterian Church, has sent in a donation of £500. z Sylvia Martin, the Honorary Treasurer of Soroptimist International, has forwarded a cheque for £1,016. The money was raised during a sponsored walk. z "Please find enclosed two cheques to the value of £760 received from X1010 Club at Malone Golf Club." Carolyn McCall

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Cardiac Risk in the Young | 53

Noticeboard 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/ebayforcharity/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-iin 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.

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

You can read full details on how this works at www.easyfundraising.org.uk

CRY Talking Point www.c-r-y.org.uk/ssgroup.htm Talking Point is a place where you can get in touch with other young people (aged 35 and under) who have been diagnosed with a life threatening condition.

You will find this chatroom helpful if you have had surgery or you are about to confront surgery; or if you just would like to find out more about CRY's Surgery Supporters Club.

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 47

www.c-r-y.org.uk

Cardiac Risk in the Young

| 75

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.