CRY Update Magazine - Issue 37

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Quarterly Update Issue 37

CARDIAC RISK in the YOUNG CRY Patrons: Rob Andrew MBE, Jeremy Bates, Ian Botham OBE, Mark Cox MBE, Nick Gillingham MBE, Rob Jones MBE, Professor WJ McKenna, Sir Steve Redgrave CBE, Professor Michael Vincent.

CRY Unit 7 - Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey KT20 5LR Tel: 01737 363 222 Fax: 01737 363 444 Web site: www.c-r-y.org.uk e-mail cry@c-r-y.org.uk


God’s Lent Child I’ll lend you for a little while a child of mine, God said, For you to love 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, Bur 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 4 April 1995. Eighteen year old Kevin died on the night we left Norwich after our first player/public screening. We hope it’s words comfort you and bring you peace.



Meet our Representative Pauline Jolly

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Until July 2002 I was blissfully unaware of the existence of CRY. Yet, as I write this, I realise just how profoundly grateful I am that Alison saw the need to found CRY in 1995 and that I was fortunate to be told about it within days of my son's sudden death. Alison kept us afloat during those days of utter shock, despair and confusion: She informed us of the conditions which may cause sudden death, recommended we instruct a specialist pathologist to examine my son's heart, alerted us to the need to have our surviving children screened - and helped us to organise these things. She also put us in touch with other families who had been through a similar experience. We felt supported during the blackest days of our lives...... It was the start of the summer holidays. Anthony, just 17, the 2nd oldest of my 4 children had completed his penultimate year of school, where both myself and my husband ,Steve, taught. The previous weeks had been particularly hectic - exams, a school trip to Barcelona, sports, social events, university open days, Alton Towers.....He seemed a bit tired - but who wouldn't? On the 13th July he appeared to be sleeping much longer than usual. I thought it was just what he needed - he'd been a bit under the weather for a couple of days . How wrong I was. Anthony had died during the night. The post-mortem revealed nothing, nor did all the subsequent tests. We were deeply shocked and totally bewildered Anthony had been unbelievably healthy throughout his childhood - not even succumbing to the usual colds and fevers. He prided himself in never having taken as much as a paracetamol in his life and not missing a day of school in over 8 years. He ate well, played football every day with his friends and took part in many school sporting activities. It feels totally unnatural to talk about one's child in the past tense, but Anthony was one of life's enthusiasts - never bored.He was uplifting to be around with an off-beat sense of humour. Academically gifted and able to teach himself almost anything, he had a string of A* grades at GCSE (maths at the age of 14) and was predicted top grades in his 5 A-levels. He had a passion for technology, had already built his own state-of-the-art computer and was set to build his own palmtop during that summer. He was self-taught in several computer languages and electronics. He had so many plans for the future....... The sudden, unexpected death of such a young person truly shatters our assumptive world. Unfortunately, there is no simple recipe for dealing with the high intensity grief we are left with, but instead we have no option but to find our own, unique way of getting through. For us, as a family, CRY has played a significant part in helping us move forward. Almost two years on, I realise just how powerful empathic support can be in the healing process and, consequently, I relished the opportunity to do the Counselling Skills course, organised by CRY. I feel that becoming a CRY bereavement supporter would enable me to help others in the way I have been helped. Pauline Jolly

Anthony in a 800 metre race just one month before he died Issue 37

A family photo taken while on holiday in Austria in 1998. Pauline is on the left with Anthony second from the right Cardiac Risk in the Young

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Issue 37 Newsletter by the Chief Executive

CRY

The cascade of events that have propelled CRY forward into August 2004 began as soon as we returned from our Christmas break. On January 5 after the successful 2nd reading of her Cardiac Risk in the Young (Screening) Bill Dari Taylor MP promptly invited our consultant cardiologist Dr Sanjay Sharma and CRY Chairman Dr Greg Whyte to be her medical advisors to draft the medical case for screening for her debate. Our mailshots appealing for you to contact parliamentarians in support of Dari's Bill resulted in hundreds of letters arriving on the desks of the Department of Health, MP's, Ministers and even the Prime Minister. It produced 80 press articles in 8 weeks and crucially softened the previously intransigent position taken by the Department of Health to the point that they ultimately agreed that a gap in service provision had been identified through Dari's Bill. Doreen Harley (Carlton) and Maralyn Bowen (Tyne Tees) had TV slots highlighting Dari's Bill and an interview with Gloria Moss was syndicated to 32 local radio stations. The BBC Politics Show gave a powerful presentation on Dari's Bill led by Ian Botham's views on screening and also interviewing Sanjay, Jeff Morland Chair of Labour Party North, whose son Levon died of Wolfe Parkinson White (WPW) and Dr David Driver an international athlete being treated for WPW who is a member of the CRY Surgery Supporters Club. Dari was in the studio outlining how totally unacceptable it is that up to 8 young people are dying of sudden cardiac death each week and how the Department of Health and medical establishment had to acknowledge that something must be done.

SADS booklet

In February our long awaited SADS booklet, written by Dr Elijah Behr (Clinical Research Fellow British Heart Foundation Scholar) and funded by a grant from the British Heart Foundation, was released onto our own www.sads.org.uk website. The significance of having an independent CRY SADS website exclusively for this definitive booklet means that a family bereaved through a young sudden cardiac death has instant access to downloading this information.

On March 10 we held our second Parliamentary Reception. This launched 4 of the 6 prospective CRY Clinics in Edinburgh, Leeds, London and Colchester and also focused on Dari's Bill. Minister of State for Health John Hutton and Shadow Minister for Health Tim Loughton spoke with great fervour in support of Dari's Bill and Dari spoke passionately about our work and the contribution CRY families had made to the progress of her Bill. TV Sports Commentator Jim Rosenthal spoke movingly of the impact of the loss of their baby son on his friends Mark and Debbie Loveday. The room was packed with MP's that were surprised and delighted to meet the Founder Members of our Surgery Supporters Club who made a huge impact on the evening with

Rt.Hon John Hutton Tim Loughton MP 2

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Jim Rosenthal

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their personalities, vigour and jaunty humour. March 12 found 20 CRY supporters in the Strangers Gallery listening to the excellent debate Dari had orchestrated in the House. This culminated in the announcement by Health Minister Melanie Johnson of the formation of an Expert Group on Arrhythmia and Sudden Cardiac Death that will include CRY in the consultation process for the new chapter to go in the National Service Framework. This offer allowed Dari to withdraw her Bill and was confirmed with a Press Release immediately issued by the Department of Health. Dari Taylor MP Dari said that "Almost 100 Members of Parliament from nearly all political parties offered their support. A number of these were MPs already involved with CRY and my Parliamentary colleagues. However, a substantial majority were MPs who had agreed to support my Bill because they had been asked to do so by their constituents - invariably members of CRY. The working group has the potential to deliver all that we asked for - so I am broadly happy, but very aware that we are not yet home and dry. The terms of reference include all that we asked for, as well as some other subjects; we will have to make sure the other subjects do not swamp our own. The membership of the group will include experts from CRY, as well as representatives from other groups; we will have to ensure that the CRY voice is heard, and the families who have brought this group into existence receive the credit they deserve. The tool of an NSF chapter has all the power we need to implement our goals; but we must make sure that the chapter is comprehensive". (taken from Julie's interview in Kids for CRY) April focussed on our major annual fundraising event the Greg’s Research Team of runners with London Mat, his two CRY hearts & Teddy & Kanga Marathon. Greg's team of CRY heart costume runners were not only the first full costume runners across the finishing line but also initiated and participated in some gruelling research which entailed having blood taken the day before the race, immediately after (giving blood after just running 26+ miles demands a high pain threshold!) and the following day.

More blood please Greg!

Greg's 2003 picture running in a CRY heart is reaching iconic status being one of 5 vignettes used on the London Marathon website, and was also used in 2 other national magazines promoting this prestigious event. Many thanks for all those intrepid runners who not Issue 37


only gave their all for CRY in achieving record sponsorship (over £100,000 raised) but to those that courageously gave blood 3 times in 36 hours to help Greg's Research. Our new Screening Manager Mat Wilson both ran in a CRY heart and supported a huge CRY heart on his shoulders with Kanga and Teddy clinging on enjoying the ride, and the view! Mat's extraordinary time carrying his double-whammy of CRY tack of 4.26 was "the hardest marathon I have ever done - now lets see what we can do next year….." April 29 Kevan Jones, MP North Durham & Chairman of CRY Parliamentary All Party Group introduced an Early Day Motion (EDM)1103 "That this House congratulates CRY for raising awareness of Sudden Cardiac Death Syndrome; applauds CRY for the support it offers those who have suffered loss from sudden cardiac death; praises its promotion of heart screening as a simple way of diagnosing most cardiac abnormalities; notes the tremendous contribution CRY has made to medical research into Sudden Cardiac Death Syndrome" So far 106 MP's have signed. However the EDM is still open and if you refer to the CRY website/CRY's work in Parliament, for this list of MP's you will be able to see if your MP has supported us and if not perhaps can ask him/her to do so. May 4 The BBC Northern Ireland Spotlight programme featured Greg giving a superb explanation of how these conditions impact on the heart and the importance of screening. The programme referenced our screening programme to a viewing audience in shock after 2 of their top athletes had died suddenly within one month. Caroline Gard with 4 players from May 29 saw the Colchester United Youth Team at the CRY team at launch of the Colchester ECG Clinic Caroline Gard's launch of our first CRY ECG testing clinic in the cardio-thoracic unit of Colchester General Hospital an event attended by our Patron Mark Cox and local MP's Ivan Henderson and Bob Russell. June 11 was our annual Bereavement Support Day at the Institute of Child Health. Greg introduced our speakers Professor Bill McKenna, Dr Elijah Behr, Dr Sanjay Sharma and the President Elect of the Coroners Society, Michael Oakley. Once again this annual event offered a unique opportunity Sanjay talking to CRY families for bereaved families to meet, have the opportunity of asking questions from experts and the chance to get to know our Bereavement Supporters whose training has been funded by our Department of Health 3 year grant of £105,000. July 4 was The Wimbledon Mens Singles Final and produced a surprise for our supporters (and over 100 million viewers worldwide that tuned in), when they heard Sue Barker announce that 14 year old Laura John from the CRY Surgery Supporters Club resplendent in her sky blue CRY polo shirt, had been selected to toss the coin for Roger Federer and Andy Roddick. This was an initiative of 2 times Wimbledon semi-finalist and past Davis Cup Captain Roger Taylor who chose CRY as his charity for this years event. Issue 37

Laura John (founder member CRY SS Club) with Wimbledon Finalists Andy Roddick and Roger Federer Five Live ran a documentary "Sporting Chance" about Sudden Cardiac Death in the young and featured the tragedies of top athletes Laura Moss and Cormack McAnallen. Prior to the programme, I was invited to the studio to discuss the merits of screening on Julian Worricker's Sunday Morning programme in a debate with Professor Stuart Logan, epidemiologist for the National Screening Committee speaking from the Exeter studio. The programme included interviews with Dr Domenico Corrado explaining the importance of the Italian screening programme, Dr Alan Hodson FA Medical Director on their screening initiative and CRY Patron Professor Bill McKenna's overview on screening. On July 14 Dr Roger Boyle, National Clinical Director of Heart Disease and Chair of the new NSF chapter on Arrhythmias and Sudden Cardiac Death confirmed that Sanjay and Greg would be members of the sudden cardiac death and screening group being chaired by CRY Patron Professor Bill McKenna. July 15 found the CRY team launching our Postcard Campaign in the House of Commons, an initiative of Kevan Jones. This

Kevan Jones and Patrons Jeremy Bates and Mark Cox with CRY families at the launch of the Postcard Campaign national campaign was covered on the BBC Health Home Page for one week and is designed to run in tandem with the consultation process for the new NSF chapter to ensure that young sudden cardiac death remains a focal point for consideration and to make sure - as Dari said - that CRY's voice is heard. Our Postcard Campaign highlights up to 8 deaths a week and will be launched in a different part of the UK each month with a different postcard representing 8 young deaths from each area. 1,500 new postcards will be printed each month and special thanks to Rob Thorne who has subsidised the printing of the postcards in memory of his son Nicholas. Postcards will go to MP's, asking them to support CRY with this fantastic window of opportunity that Dari has achieved for us and our fundamental goal - the Sandra Pearce collecting a crucial issue of prevention cheque from the Director of of young sudden cardiac Johnson Apparel Master spondeath. sors of the first Postcard. Cardiac Risk in the Young

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Report from Steve Cox - CRY Manager CRY

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I would like to apologise for not having this Update with you sooner. As you can see from our Newsletter so much has happened in the last six months it has fully extended us all!! We have also had major staff changes, which has made life in the office truly hectic! Well the good news is that we have quite a lot of our next issue - Number 38 - completed already, so hopefully this will be with you around Christmas time (2004!) However, it is always dangerous to predict anything at CRY. Just as we all start to clear our backlogs, and get a chance to focus on the semi urgent (instead of super urgent) requests, something new takes us forward. As you can see I have increased the size of this Update to the maximum we can manage which makes it a Bumper Issue of 68 pages! This is to accommodate the missed issues and cover the extra months of fundraising and raising awareness. One of our problems is that until we can have a member of staff exclusively dedicated to the Update it will always be vulnerable to how much work is being demanded of us in the office - it is a bit of a Catch 22 - the busier we are, the more there is to go in the Update and the less time there is to put it in! I hope you are happy with what I have produced.

New CRY Christmas Cards

We have chosen a number of new Christas Cards for 2004. Cards from 2003 will also be available. Please go to www.c-r-y.org.uk/christmas_cards_charity.htm on the CRY website to see the full details,costs and sizes of the cards. Order forms can also be downloaded and printed out from the web. As well as seeing availability of 2003/2002 cards.

New website pages CRY in parliament

New CRY Staff

We have a new section on the website “CRY in Parliament” where you can view all the latest on how MP’s are supporting CRY’s work. There is an ongoing BUPA poll, so please encourage your friends to visit the site and make their voices heard.

CRY Referral Clinics For more information on the CRY referral clinics go to www.c-r-y.org.uk/clinics.html

SADS booklet online Our new publication ‘When a young person dies suddenly’ is available at the website www.sads.org.uk. You can access this directly or via the CRY homepage. PDF’s of the entire booklet can be downloaded in both high and low resolution formats.

Some of you may already have had contact with Kerry who has taken over the management of the CRY website. He is currently busy updating the incredible amount of published articles onto the web, as well as learning the tricks of the trade. If you would like to talk anything through with regard to the website please call either Kerry or myself.

New CRY soft toys “Shirley’s Babies” & Bak Pak Ted Over the past year Shirley has been working on producing a CRY soft toy. A bit bigger than the size of your hand with beautiful embroidery (Heart logo on the back, and tag with CRY information) The full details of size and close ups of them can be seen on the website www.c-r-y.org.uk/CRY_soft_toys.htm . We call them “Shirley’s Babies” as they have taken about nine months to arrive and now she is very protective of them. They cost £4.50 each (including post and packing) We also now have a baby CRY teddy with a little backpack, costing £3.50 each.

London Marathon 2004 and 2005 Please send photos in for a picture collage in our next update. CRY vest a few months down the line. We will be putting together a full feature on the Please send in any London Marathon which once again was a huge We have started recruiting for 2005 already with a 2004 Marathon photos success. If you, your family or your friends took any large proportion of our places already reserved. photos of CRY runners on the day please send them in (or Please call me ASAP or follow the heart runners on the CRY email). State if you would like them returned. Any photos of runwebsite, if you want to run. ners either before, during or after the race, or even just in your

Inclusion in future updates Many write ups and newspaper articles are not included in this update. I will endeavour to include these in the next update. However, I would like to reassure you that they will all be on the website. Please keep sending in the photos and write ups of your events as it is always great for us, and all the other CRY supporters to see what incredible efforts people will go to in support of CRY.

If you would like an A4 or A3 copy of any of the pages or articles in this update (laminated) please contact the office 4

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Report from Mat Wilson - CRY Screening Manager The CRY Centre for Sports Cardiology

Hello and welcome from the CRY Centre for Sports Cardiology (CRY CSC) within the Olympic Medical Institute. I am coming to the end of my third week, and things are finally starting to calm down. I knew I was taking on a massive workload, but I didn't quite realise how huge it was going to be. In April 2004, Jan Smith did a sterling job in her handover, and that meant that I could hit the ground running. If you know Jan and have had previous dealings with her, I'm sure you'll agree that she was hard working, extremely well organised and was always a pleasure to approach with any questions you felt only she could answer. So Jan, if you're reading this, I would personally like to thank you for all your hard work in trying to make my life a lot easier. My first three weeks were taken up with organising and establishing the structure of the CRY Centre for Sports Cardiology (CRY CSC), attending the British Cardiac Society conference and conducting a schools ECG screening at Millfield. The CRY CSC provides the ultimate in specialist cardiac assessment and diagnosis for any suspected cardiac abnormality within athletes. Dr Greg Whyte (CSC Manager) has been so busy over the last few years that accurate statistics about patient intake, care and the treatment given was somewhat unclear. Camilla Tighe (CRY CSC Assistant) spent one week typing and editing the current database with new patient files. To date, the CRY CSC has seen over 150 elite International and National athletes with suspected cardiac abnormalities. The athlete's doctor who could not find the exact cause or reason for their cardiac condition and needed specialist cardiac opinion referred these athletes to us or they have been referred through a sports screening. Following our assessment (and the prescribed pharmological / surgical therapy in some cases), over 98% of the athletes that we have seen, have been given the all clear to participate in maximal effort exercise. The British Cardiac Society conference was held in Manchester this year. It is essentially one of the biggest cardiac conferences in Europe. Delmar Reynolds kindly invited CRY onto their exhibition stand for the week. We didn't have the biggest stand in the GMEX Centre but I was certainly busy. The first 2 days were for technicians and medical students. Both of which expressed the greatest interest in CRY. The 3rd and 4th days were for the cardiologists, and although I was not as busy as the previous 2 days, some very important conversations were held, and I was pleased with the progress CRY made. The BCS conference is not the type of conference that CRY usually attends, but it will be one that CRY will attend in the future. Some very important people expressed an interest in CRY and it is clear we are becoming well received and recognised within the medical community. Lastly, the school screening at Millfield was a big success. As

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usual Kate Dougal (our ECG technician) was up to her excellent standards and made me feel very welcome. The superb Tony Hill was there to guide me through my first screening as an organiser and not just as a technician. Finally, Camilla Tighe was there helping out and making the administrative process of client paper work and on the day organisation run smoothly. Results are due out next week, and I look forward to working with Millfield School next year. Furthermore, I would like to thank all the nurses at Millfield, but specifically Rosemary Cole. Rosemary is leaving Millfield, and is taking up the position of Head Nurse at Prior Park near Bath. CRY wish her the very best in her new position at Prior Park and again I look forward to working with her in the near future. The Colchester ECG Clinic is fully up and running under the careful guidance of Caroline Gard. Caroline's meticulous eye for detail has certainly made my job a lot easier, and I congratulate her for helping to establish the Colchester clinic in such impressive fashion. The CRY Centre for Sports Cardiology Screening

Millfield ECG testing - 2004 Clinic gets underway soon, and will provide full ECG and ECHO Screening to those individuals that would like this service but have been unable to attend our other screening dates. September is going to be a very busy month. I currently have 4 National teams to screen, keeping myself, Dr Makan and Dr Sharma busy for the foreseeable future. That is about all for the moment at the CRY Centre for Sports Cardiology. It is with great pleasure that I am now working full time for CRY, and I am eager to help make a difference to CRY's screening programmes, the referral clinics and the CRY Centre for Sports Cardiology. For all your records, my full address is: Mathew Wilson - Screening Manager CRY Centre of Sports Cardiology Olympic Medical Centre, Northwick Hospital Watford Road, Harrow, Middlesex. HA1 3UJ Tel: 020 8423 7200 Fax: 020 8423 7201 Email: Mathew.Wilson@boa.org.uk

Mat Wilson has taken over as Screening Manager and is based at the CRY Centre for Sports Cardiology. If you are interested in taking forward an ECG screening in a school, or a sports screening please contact him. Tony Hill is now the CRY Family Screening Manager dealing with family mobile screenings and is based at the CRY office. Fran Walton is the Co-ordinator for Donation of Machinery. If you are interested in directing your Memorial Fund towards a piece of equipment in a local hospital or surgery please contact her (01737 363 222) for more information on the machines available and their costs. Issue 37

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Julie’s Interview with Dari Taylor MP 1. We did meet at the Parliamentary Reception in March. Please tell me what has happened since. The reception was held on 10 March, and the Third Reading of my Bill took place on 12 March. (The Third Reading is the point at which a Bill is debated fully in the House of Commons). The debate was passionate, supportive and well-attended by Members of Parliament from most of the political parties. I withdrew my Bill at the end of this debate, following an offer by the Government's Health Minister, Melanie Johnson MP. In her response to the debate on my Bill, the Minister proposed to establish a working group of cardiac experts and charities like CRY, to write a new National Service Framework (NSF) chapter. I accepted the Minister's offer, and withdrew my Bill from the Parliamentary process. The NSF is a measure introduced by the Government to ensure that a set of nationally recognised health service standards is established for certain groups of society and medical conditions. The new NSF chapter will specifically deal with Arrhythmias and Sudden Cardiac Death, and the hope is that a defined service model, in which screening is central, will be put in place. The working group for the chapter is in the process of being formed, and will start its important work in the near future. 2. Please could you explain about the Private Members Cardiac Risk in the Young Screening Bill. Each year, a ballot is held at the start of the Parliamentary session, when the names of 20 MPs are drawn from a box. These MPs then have the opportunity to introduce a piece of legislation on a subject of their choice. These are known as 'Private Member's Bills' (A 'Bill' is the name given to proposals for legislation before they become Law). I was delighted to have been drawn 5th in the ballot, and immediately decided to introduce a Bill referencing the work of CRY, and my Bill was titled 'Cardiac Risk in the Young (Screening) Bill'. 3. What are its aims? The aims of my Bill were to publicise and address the fact that a gap in medical service exists that is, in part or directly, causing the sudden and often avoidable deaths of 4-8 fit, young people a week. This situation is totally unacceptable, and I wanted the Department of Health and the medical establishment to acknowledge that fact. 4. How pleased were you with the response from other MPs for your Bill? I was absolutely delighted. Almost 100 Members of Parliament from nearly all political parties offered their support. A number of these were MPs already involved with CRY and my Parliamentary colleagues. However, a substantial majority were MPs who had agreed to support my Bill because they had been asked to do so by their constituents - invariably members of CRY. I hope this demonstrates that contacting your MP can have a very positive effect. 5. Are you happy with the outcome? The working group has the potential to deliver all that we asked for - so I am broadly happy, but very aware that we are not yet home and dry. The terms of reference include all that we asked for, as well as some other subjects; we will have to make sure the other subjects do not swamp our own. The membership of the group will include experts from CRY, as well as representatives from other groups; we will have to ensure that the CRY voice is heard, and the families who have brought this group into existence receive the credit they deserve. The tool of an NSF chapter has all the power we need to implement our goals; but we must make sure that the chapter is comprehensive.

The membership of the group will include experts from CRY, as well as representatives from other groups; we will have to ensure that the CRY voice is heard, and the families who have brought this group into existence receive the credit they deserve.

6. How did you first hear about CRY? I first heard about CRY, in the same way I suspect that most people do, following the tragic death of a young person. Levon Morland, the son of a close family friend, was 22 when he died in his sleep. He had been diagnosed with Wolfe-Parkinson-White Syndrome, but was informed by his doctor that this condition was merely a 'nuisance', the operation to treat it was unpleasant, and 6

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that he should concentrate on 'getting on with his life'. Levon has no life to get on with. I was absolutely distraught and horrified by his death, but even more so by the fact that it could have been avoided, had he been informed that his condition was potentially fatal and required treatment. Thus, along with Kevan Jones (Member of Parliament for Durham North), I was one of a small group of MPs who decided to establish an All-Party Parliamentary Group (APPG) on Cardiac Risk in the Young. APPGs are composed of politicians from all political parties who feel strongly about a particular issue, and work to highlight their concerns. 7. Why did you choose to help CRY? Again, as a result of Levon Morland's tragic death and my work with the CRY APPG, as soon as my name was drawn during the ballot, I immediately knew that I wanted to work with CRY to develop a Bill. 8. What are your hopes for CRY in the future?

My hopes are that CRY can continue to go from strength to strength - supporting and advising young people and the families of young people who have sadly passed away, whilst putting pressure on politicians like myself and the medical establishment where necessary.

My hopes are that CRY can continue to go from strength to strength - supporting and advising young people and the families of young people who have sadly passed away, whilst putting pressure on politicians like myself and the medical establishment where necessary. I am more than confident that this will be the case, having been totally impressed by the steely determination of all of those involved with CRY. I could not have introduced my Bill without the hard work and tireless commitment of Alison Cox, Dr Sanjay Sharma and Dr Greg Whyte and, of course, the CRY families who wrote to their MPs asking them to support my Bill. I would like to offer them my especial thanks.

WORDSEARCH Can you find these words? MEMBER PARLIAMENT COMMONS HOUSE LORDS VOTE SPEAKER

C R E B M E M P

A I T N L O Y A

R S P E A K E R

S R N O D N O L

T E L K E M F I

R H O U S E B A

Y D R E U Q J M

A F D T V O T E

T E S A L I U N

S N O M M O C T

ONLY JOKING by Julie What profession did the parrot get into when it swallowed the clock? Politics (POLLY TICKS)

What kind of ribbon do politicians use? Red tape

Who looks after sick gnomes? The National Elf Service.

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QTKanga and CRYTeddys ADVENTURES SO FAR Who wants to be a millionaire in memory of Madelaine Mulcahey

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Connie Hyde (from the TV show The Bill) and Julie Hesmondhalgh appeared on the Christmas Celebrity Edition of Who wants to be a millionaire TV show. The programme was shown on Christmas night and they won £8,000 for CRY in memory of Madeleine. Madeleine Jane was the daughter of Hugh & Jane. She was a fit, active and vivacious little girl - a source of delight to family & friends. She died of dilated cardiomyopathy on 17th December 2000 at the age of 2 ½.

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In memory of Barbara Ann Whelan Sheila Clarke (CRY's London Representative) and her 3 young accomplices - Elizabeth, Tom and Harry, completed a Sponsored Walk. They started in Roehampton, passed through Sheen, where they joined the river and finished in Richmond. Along the way they visited shops to tell people about CRY. They also had their Collecting Bucket, which got very heavy to carry as it filled up! They had a great day and raised £825.55

Shiela’s table top at the summer fair

Tom, Harry & Elizabeth leaving home

By the river at Richmond

Elizabeth with her bucket in hand

Tom & Elizabeth collecting

Half way there

Home and dry

Hungry after a long walk

Mission accomplished

In memory of Sam Hayes "We held a collection instead of sending Christmas cards. We have previously donated money to your charity because unfortunately earlier this year we lost a little boy Sam Hayes who was fit and healthy and died of an undiagnosed condition". Mrs J Worthy, Pilsley Primary School. Noadswood School held a fundraising for CRY "We discussed which charity we wanted to do sponsored events for and your worthy cause proved to be the most popular. We did various fund raising events during the course of a week, some of which included cake sales, sponsored silences, throwing an egg, penalty shoot outs, sponge the teacher & dance mats. We had great fun and also feel proud of the money we have raised." From Tutor Group 8S and Tutor Miss S Costa. 10 |

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In memory of Sarah Williamson Pupils at Martock Primary School have been fundraising for CRY. "A collection was held by Key Stage Two pupils at the school, in particular Mrs Frost's class and Miss James' class, who donated money to CRY instead of handing out lots of Christmas cards.” Liz Foy

In memory of Mike Scott Lady Lumley's School (Mike's old school) have once again raised money in Mike's memory. Donating £250.

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In memory of David Harry

“As we did last year, during our Infant Production “The Little Angel”, Junior Production “Sheik, Rattle and Roll” and our nursery nativity, we held collections in aid of your charity. We did this in memory of an ex-pupil of ours, David Harry, who died suddenly at the age of 15 years. I am pleased to enclose a cheque for £286.93.” Mrs D Galloway New Earswick Primary School (in York)

In memory of Nicholas Thorne “My name is Amber Anderson and I am twelve years old. Nicholas was my Mums’ godson , I knew him since I was born. Nicholas was noisy, funny and caring and was fun to be with. He died when he was thirteen, in November 2002, from a cardiac related illness. I felt shocked and very sad that I would never see Nicholas again. I also felt awful for his Mum, Dad, brother and two sisters. In September 2003, I took part in the Flora Light Challenge for Women, with Nicholas’ Mum, my mum, his sister, and lots of Nicholas’ family members to raise money for CRY in memory of Nicholas, and to help others. We chose CRY because this charity raises money to help to detect cardiac risk in young people, saving many lives. It was a very hot, sunny day and there were thousands of people that had all come to raise money for hundreds of different charities. While the race was going on, we started to realise how far we had walked. The overall distance for the race was 5 km. We kept reminding ourselves that we were helping others, and remembering Nicholas too. By the end of the race, we were exhausted, although glad and proud that we might have saved some lives. As we crossed the finish line we all held hands and thought of Nicholas. Nicholas was a great friend, and I will never forget him. Love you Nick xxx Amber Anderson Amber raised £295 in Nicholas’ memory

Charlotte Thorne and some of her friends baked cakes and sold them in memory of Nicholas. They raised £6.72 Oakwood School in Horley donated the proceeds of their 'Awards for Excellence Evening' which was attended by Rob and Eunice (Nicholas' mum and dad). They raised £353.11 Issue 37

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The Ellegance (Ladies only) Health Club in Weybridge Surrey have donated £238.70

St John's community Partnership in Stockton have raised £111.50

"We are pleased to enclose donations totalling £130 raised by Managed Office Solutions on behalf of Novell UK. Managed Office Solutions offered Novell surplus office furniture to their clients in return for a donation to Novell's nominated charity. We do hope this contributes to your cause and we are very pleased to be able to assist.” Melanie Cannings

"I wanted to send this cheque to help you along with the good work you are doing. My Son is a very competitive rower at St Paul's School in Barnes, and I have had him tested just in case." Mrs A McGrath £2000 was donated.

Parachute Jumping is becoming such a successful event for CRY. Tandem Skydive is particularly popular. Jane Knaggs raised £181. Spencer Green £115.Stephen Onions - £110. Laura Johnson raised £125. Chanelle Brown raised £115. Joanne Hintz from Forest Gate raised £110. Amanda Walsh from Helston raised £100. Miss Seema Tank raised £110 Jason Thomas made a Skydive for CRY and raised £115.00

Sheila Hand owns a Dennis Brown has shop in Stoke on Trent, sent in £100 and with she volunteered to sell B.P Matched Giving CRY Christmas cards Roger King organised a made a total of £200. 'Sponsored Haircut' he had for us and sent all the 70 sponsors who were all money she had taken. willing to pay to see Roger She raised £115.90 Via Eddie Farrow the British 2 Man lose his ponytail. His friends, Bobsleigh Team, consisting of Dave colleagues and family helped Rayson and Mark Leitch held a raffle him raise £633. and raised £106.54 Mr P A Woodrow had a collection at his retirement party for CRY and raised £387.00

"I do not send many xmas cards anymore, so please accept a contribution of £100 to include Catherine Wylie has sent in a further £100 membership for one year" Mrs Solveig Stone from her 10K run in 2003 Also received £348 on 05.01.04 Via Eddie Farrow (CRY's Conference Representative) The Friary House Residents held a Christmas Gift Sale and raised £135.83

Paul Woodridge 'Soared through the sky' for CRY and raised £115. Chris Alder and Angus Pearce completed a static line parachute jump and raised Fairfield Labels in Droitwich have made a £235. donation to CRY in lieu of sending each other Christmas Jill Brennan ran in the New York Cards. They Marathon in November for CRY raising raised £150. £842.89 Julie Fearon held a Tombola Stall at Sleaford Xmas Market which raised £75. Then they decided to top it up to £100 for a Christmas Donation to CRY

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"Me and my friend Rodger Morley have now collected all our sponsorship from The Great North Run, that we did back in September 2003! I hope the small amount will be of use to your excellent cause and charity work!" Tom Horbury. Tom and Rodger raised £300.

Angie Davison who works for CSC Computer Sciences Ltd in Aldershot, competed in the Windsor Half Marathon and raised £665.

Kim Thomson completed Tridonic The Great North Run for Atco Ltd CRY. "Thanks for letting me run with your charity. I in Co Durham have made a donation, Frances had a fantastic experience Hoy from the HR Department has sent in £106. and met quite a few CRY runners along the way." Mr and Mrs Beesley have donated £100. Writes Kim. She raised £540.

Cardiac Risk in the Young

The Church of St. Lawrence, Westbury sub Mendip, in Somerset have forwarded part of their Annual Carol Service collection. They donated £118. Issue 37


Our fundraisers CRY

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In memory of Stephen Burrows Janette Hernen (Stephen's sister) together with her family and friends raised £1070. They have requested that the money goes to the Neil Wickers and David Staff Memorial Fund, and is put towards a Mobile Screening Event in Darwen.

"On behalf of the employees of Royal Mail (Slough) and GSK (Slough). You will find a cheque for £1000 for your charity. This was gifted by the Windsor Half Marathon to a charity of our choice, for the assistance that we provide during the half marathon. I know that the cheque this year will be put to good use, and that all your dedicated hard work will be rewarded". Tom Graham

In memory of Laura Fox The Salvation Army Thetford Corps invited Robi Fox (CRY's Suffolk County Representative) to tell them about the work of CRY at their Carol Service. They donated £305.55 to CRY

"Myself and my friend Joyce Brown decided we would hold a 'Charity Disco' for two charities, and I decided that CRY should be one of them. My Fiance and our daughter had recently been down to London for tests for Hypertrophic Cardiomyopathy and I decided we needed to do something to promote the charity. We held the disco in Hughenden Rugby Club, in Glasgow on Friday 10th October. We managed to sell all 150 tickets and organised a raffle with prizes kindly donated by local shops. The night was a great success and thanks to our brilliant DJ the dance floor was never empty. After counting all the money at the end of the night we worked out that we had raised just over £900 which was split between the two charities. We couldn't have done it without the help from our friends and family and a big thank you must go out to them." Fiona Robertson

In memory of Therese Field "Thanet Festival Choir traditionally holds a retiring collection for one or more charities at the annual Christmas Carol Concert. Therese Field's sisters Tasmin Field and Tara Gore are both members of Thanet Festival Choir and Tara spoke on behalf of CRY at the Carol Concert. Both choir members and audience gave extremely generously, and we have divided the money equally between the two charities." Hazel Halse, Chairman. They raised £188.06 Issue 37

The girls start off the night very reserved!!

Our wonderful DJ ensured the dance floor was never empty!!

A good night was had by all!!!

In memory of David Brian

In memory of Gareth McDonald

A collection was taken at David's funeral and donated to CRY. £185.47 was raised in memory of David.

At the initiative of Maralyn Fry, staff at the Charles Jobcentre Plus made a donation to CRY, Instead of buying christmas cards for each other. They raised £100 in memory of Gareth who died age 27 in February 2000.

In memory of Gregory Palmer Gregory David Palmer aged 21 died on 22nd January 2003 The Palmer Family, St Edmunds C of E, St Edmonds PCC, and well wishers donated £1,167.50 in memory of Gregory. Sheena Palmer donated a further £100 in memory of her Grandson."

In memory of Janet Rebecca Gorvin A collection was made at Rebecca's funeral. It was the wish of her husband Peter for the money to be donated to CRY. Over £425 was donated in her memory. Cardiac Risk in the Young

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In memory of Nicholas Sketchley "On the 15th March Tabitha Sketchley held a charity dinner and dance at 'Ravens Ait' in Surbiton, Surrey to raise money for CRY, after losing her husband suddenly two years ago to a heart related disorder. The event included a three course meal, raffle, professional photographer, games and a disco. It was a great success and Tabitha was able to raise £2,500. Our local paper is running an article, and Tabitha is planning another event for February" Louise Dilley

in memory of James Paterson Doug ran the 2003 New York City Marathon in memory of his brother James who died age 24 on 22nd May 2003. The following letter was sent out to over 100 people who contributed to Douglas' Marathon efforts. New York City's Streets belong to Esher Paterson breaks his record by 3hrs 24mins (that's 'cos he's never run a marathon before). Crippled, spitting and swearing (what's new?) A sweaty and unpleasant Paterson comes in 1838th. Or alternatively, beats 28, 162 of field. His socks are bloody, his temper vile, and he niffs pretty badly. He realises he was potty to do this, as it is our pleasure to remind him. He hates us, we hope his legs hurt for weeks. What a plonker. It was great for us - 5 days of fun in Fun City. Asked what our favourite experiences were - of course being chased up the Empire State Building by King Kong. Second only to the shopping and the snacks. It's remarkably hard work watching a marathon - pancakes the size of manhole covers, all dripping in butter, cream and sugar are called for. Followed by a snooze in Central Park to allow it all to settle round our girths. What? There was a marathon on? What kind of twerp would go in for that? Well a twerp with good friends anyway - £3,366.00 raised for Cardiac Risk in the Young. CRY tests young athletes to detect symptoms that can lead to Sudden adult Death, raises awareness of the conditions, promotes research, supports those affected by it, and seeks to put preventative strategies in place. We raise our glasses to Douglas (what a stinker!) and CRY. And to you - thanks. Love from Alastair, Stephanie, Douglas and Amanda.”

In memory of Simon Cox Simon died in his sleep on October 19th 2002, aged 36 years old. He had been a diabetic for 28 years and at first it was thought that his death was connected, but the post mortem revealed nothing wrong, and the conclusion was ‘unascertained’. Unknown to his family he had been complaining of palpitations and had a 24 hour tape to monitor his heart beat. The results were negative, and he was due to have a heart scan, but didn’t make it. Simon had other symptoms which he, and his family, thought were due to his diabetes. Carole Cox and her family held a Car Boot Sale in memory of her son Simon, together they raised £216. 16

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Our fundraisers CRY

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In memory of Danielle Woking Spiritualist Church held an evening of Clairvoyance "Our small church with a usual congregation of about 30 - 40 persons, had to close the doors 10 minutes early. Approximately 100 persons enjoyed an evening of Clairvoyance with two popular mediums. Among the congregation sat two young Ladies - Terri and Natalie, who's Sister, Danielle passed away two years ago aged 22 years. Roy Hucker

In memory of James Lodge "These cheques were donated in lieu of flowers at the funeral of our son James who died suddenly 15th May 2003 aged 4. We have since been told that James had a Cardiac rhabdomyoma and it was this that caused his heart to stop, we hope that you will be able to put this money towards the work that CRY does to prevent other families suffering a loss as unbearable as our loss of James has been". Writes Judy and Andrew Lodge. They donated £497.33

In memory of Joshua Morrison A car boot sale was held at Cheddar in Somerset in September, together with donations from friends and family raised £220.00 "My family will continue to raise funds for CRY in the future in memory of Joshua Morrison, a five year old son of family friends, who died suddenly from viral induced Myocarditis last Christmas" Mrs Betty Carter

In memory of Joe McKeever Friends and relatives made donations to CRY instead of floral tributes at Joe's funeral and raised £1,600. Joe died age 16 whilst on holiday in Spain in July 2003.

In memory of Timothy Reed June and Ken (Timothy's parents) have sent in £200 in Timothy’s memory. TImothy died age 27 in April 97 He was a Fit & healthy HGV driver working for P&O he was also involved with the TA for many years. He collapsed after feeling unwell after loading his lorry at work.

In memory of Mandi Blake "A young policeman died from Sudden Death Syndrome. I wrote to them to let them know about CRY and what we were trying to do and they sent us a cheque to help us with our fund" Margo Wright. £200 was donated by Cleveland Police. Margo and her team held a 'Halloween Party'. Everyone had a good time, and further donations from Agnes's collecting tub made a total of £150. Agnes Redman has raised £200 in the last year collecting outside her local shop. A local group called 'Silver Dollar' raised £250. A fundraising night was held by Margo (Mandi's Mum) and her team raising £800. With further donations in Mandi's memory a total of £1150 has been donated Members and visitors of Beechwood Easterside & District Social Club Donated an ECG Machine to the James Cook University Hospital, Children's Ward, Marton Road, Middlesbrough. They raised £6505.

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In memory of Ian Bowen Paul Barclay completes the Great North Run. "Paul runs the Great North Run every year for a different charity. We are pleased he chose CRY this year for us. Your posters you sent for him to put up in the Barbers shop must have been eye catching as he told us he usually doesn't make as much as £578.50. He was delighted" Maralyn Bowen. "Staff at Warburtons Bakery cycled on exercise bikes at the bakery. Last November when we won The Evening Gazette Community Champions for Youth Awards, it was Warburtons that sponsored the Champions for youth. We are both very touched to think that they have still remembered us after nearly a year since the presentation, and have just recently done this fundraising for us." From Kenny and Maralyn. They raised £620. "The Burden Preperation Golf Society's Annual Competition has been organised for the third year running by Glen Shepherd and Frank Spencley for CRY as their charity of the year. They all had a great day." Writes Maralyn. They raised £120.

In memory of Alan Duck A collection was held at Alan's funeral and £195 was donated to CRY in his memory.

In memory of Andy Gard Via Peter Gard (CRY's East of England area Representative) A local company Arjobex Limited in Clacton-on-Sea has made a donation of £100. The Frinton Free Church raised £323 at a recent quiz night. Arnold Lodge Freemasons and friends have donated £180. The Holland Floral Club have donated £100 in memory of Andy Caroline recently sent in her 'little' cash donations that she has Dr Geldard with Peter and Caroline Gard and Ivan Henderson MP prebeen saving up. This totalled over £3,000. senting an ECG machine to the Colchester General Hospital

In memory of David Harry Mr Jayson Perfect and his staff at the George IVth public house, which also holds the venue for Headliners Comedy Club raised the majority of £610.25 sent into Mark Harry. Jayson and his staff devoted a lot of time and effort raising funds and are keen to support CRY into the future. Mark Harry and Jayson were presented with a cheque from the comedian Al Murray (AKA ‘The Pub Landlord’) who is a regular at the club along with other well know comedians.

Mark, Jayson with Al Murray (AKA ‘The Pub Landlord’ 18

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Staff and customers of Qrotek (Northern) held a golf match and auction in Sheffield for David. They raised £610. Issue 37


Our Fundraisers CRY

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In memory of James Kelly A Charity Football Match raised £3,334.99 in memory of James. Kildrum United Football Club have donated £100, a further donation from Rosemary Kelly made £150 in memory of James. Two members of James' family work at Morgan Stanley. Following the Charity Football Match further donations were made and £383 raised.

In memory of Gemma Collyer Gemma died suddenly on 16th October 2002 of a heart complaint. She was 20 years old. Mrs P Downes 'ran' the Flora Lite Women's Challenge. With the support of Gemma’s parents and friends over £300 was raised. Becky Newban from Bromley made a Sponsored Parachute Jump in memory of Gemma and raised £535.

In memory of Michael "Mick" John Chapman A collection was made at Mick's funeral and £220 was donated.

In memory of Christiaan Smith Angela (left) and Maxine (right) Sollars competed in the 10K Swansea Run and raised £350 in memory of Christiaan Paulette (Christiaan's mum) was delighted to receive a cheque from an anonymous donor for £500, with the contents of her 3 collection boxes the total raised was £590. Swansea Valley Roundtable have been fundraising in memory of Christiaan and raised £750. Christiaan died suddenly out of the blue of a hidden heart condition myocarditis at the age of 24.

In memory of Suzanne Taylor "Following the recent success of the charity cricket match and sponsored run earlier this year, Gerard Lennon decided to do a 'Sponsored Slim'. It took him a couple of months, but after his target date he had lost 15 Kilos. The money has been raised by friends and colleagues at Royal Mail, Chester in memory of my daughter Suzanne Taylor". Beryl Ewing He raised £235.

In memory of Craig Johnson Jean (Craig's mum), with the help of family and friends, organised and participated in a sponsored walk in memory of Craig who died at the age of 21. They raised £1,000.

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In memory of Stewart Howard Staff at Tesco's in Thetford did not send Christmas cards to each other, instead they had a collection and donated £200 to CRY in memory of Stewart. M & G Collins organised a Disco and raised £140. Staff at Rosemary Musker School held a Car Boot Sale. M Taylor donated the school grounds free of charge and they raised £550. Jane (Stewart's Mum) and her team have been busy again for CRY. M & G Collins organised a disco raising £193, and the Burley Family held their own Quiz Night in memory of Stewart donating £130. Making a total of £323.

In memory of Philip Carter Philip died from SDS whilst watching TV with his wife at Easter. He was 25 and was in apparent good health. His father Dr. N.J. Carter donated £100 in his memory.

In memory of Dominic O’Loughlin Phil and Lynn Knowles, friends of the O'Loughlins donated £720 in memory of Dominic who died suddenly in 1994 age 11.

In memory of Neil Wickers and David Staff The Wickers/Staff fundraising Team have struck again in Darwen. They held their annual Christmas Fayre which raised £826.14. Then the Christmas Raffle and Tombola Stall raising £495 making a total donation of £1,321.94 The Ladies Committee held a Charity Stall and raised £200 in memory of Neil and David. Marie Yates held a Clothes Sale, with donations she raised £100.

In memory of Ben Newton Chatteris Town Youth Football Club, Cambridgeshire. "On Sunday 8th February 2004 we organised a football match in memory of one of our players, who tragically died on 23rd May, 2003. Ben Newton was just 16 years old when he died last year and was a member of our, then, Under 16's team. The boys had just completed their 2002-03 season when Ben suddenly passed away. Last weekend coincided with what would have been Ben's 17th birthday and we arranged for the 'Ben Newton Memorial Match' to take place between his former team-mates and another local team. The 'opposition' included Ben's older brother, Nick, who fittingly scored the first goal of the game. A local shopkeeper for whom Ben worked part-time donated a cup for the match and it will now be an annual event. During the match we sold programmes, organised a raffle and had a 'charity bucket' that was passed around the spectators. We feel very proud to have raised such a large sum of money in just a few hours but this was very much due to Ben's popularity and the impact his death had on our town. Although I am Secretary of the football club for which Ben played, my involvement in Sunday's match was also personal as Ben was one of my son's best friends and my husband had managed the team in which Ben played for three years.” Jean E. Heading Secretary, Chatteris Town Football Club. A total of £604.20 was raised in Ben’s memory 20

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In memory of Helen Luke The Ladies and Gentlemen at Calderfields Golf Club held a Charity Shield Competition and a Christmas Raffle for CRY, they raised £186. "I was first drawn to CRY some eight years ago after my daughter Helen, a 'healthy' young P.E. teacher died suddenly from an undiagnosable arrhythmia. I am glad to hear that CRY is going from strength to strength. Jenny Luke.

In memory of Michael Looker Vera (Michael's mum) has been busy selling Christmas Cards, she also emptied 2 of her collecting boxes at the “Woodpecker and Churchillian” and raised a total of £146.78 in memory of Michael In the last update we reported that Vera Looker and her granddaughter Sofaya had held a 'Sponsored Swim' and raised £125.This was infact the amount raised solely by Sofaya. Vera also raised £450 making a grand total of £575.

In memory of Laura Bennett John Glover from Slater Fox (Insurance Brokers) Limited, Stoke on Trent has made a donation of £100 in memory of Laura who died at the age of 13 on July 10th 1998.

In memory of Justin Meek Tewkesbury Ladies Circle have been busy fundraising for CRY again. Lucinda Flannery (chairman) lost her brother to Sudden Adult Death Syndrome 2 years ago. The cause of his death has never been discovered. They raised £400 in his memory.

In memory of Philip Abraham John & Richard Abraham held a 'Christmas Raffle' at Ladbrokes Racing, Southampton and raised £100. Further donations from family and friends raised £115.98 The Royal Marines Association have been supporting CRY. After a good evening they presented Mary (Philip's mum) with a cheque for £750. Friends of Botley School held a Fete and with the help of Mary they raised £250. Mary applied to Sainsburys for a grant, they accepted and awarded her £300 from their 'Local Hero's Scheme' a further £200 was added to this through Charities Aid Foundation. Aerostructures Hamble in Southampton, have made a donation of £500 to the Philip Abraham Memorial Fund from their Employees Charity Fund for Christmas 2003.

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In memory of Ian Strange "In memory of our dear Son Ian whose birthday was on the 16th May" Pat and David (Ian’s Mum and Dad) made a donation of £100.

In memory of Nicholas Thorne All the staff at Boots the Chemist in Eastbourne have held a collection in memory of Nicholas. He is the grandson of Jenny Machin, who works at the store. They raised £300. Many people have made donations to Nicholas’ memorial fund. They include Ann Byrne who took part in The Women's Flora Light Challenge, which involved walking through Hyde Park. She raised £105. Mrs S Dettmar has made a donation to Nicholas's fund of £100. Joanna Newton £160, Nina Hobbs £250, Jenny Machin £145 and Amber Anderson £295 (KIDS for CRY). "Nicholas was a real little character, once you met him, you would never forget him. He was lively, caring, excitable and beautiful, a pleasure to know. He was always so full of life, so full of energy, so interested in everything and everyone, and most of all, so full of love. His life ended so tragically at the age of 13 due to a very rare defect in connection with his heart. For his parents, Eunice and Robert, his brother Dean and sisters Charlotte and Amy, life will never be the same, it is impossible to imagine the sadness they feel. Nicholas will be remembered and missed by so many.” Tracy Anderson (Nicholas’ Godmother) A Charity Fireworks evening was held, attended by Alison and Steve Cox. "We were lucky with the weather this year (unlike last year!) and the event proved to be an even greater success than ever before. We had a total audience of 585, mainly friends and supporters who as always spent heavily on raffle tickets, food and refreshments. The mulled wine was a big hit this year with the bar alone taking over £700! The total takings exceeded £3,000, which really did make the evening a worthwhile and memorable event. We are also lucky to have such a dedicated and hardworking team. We are sharing this years proceeds with the Shooting Star Trust (Hospice for children) and I am delighted to enclose our cheque for £1500.00 Sue Vaughan.

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In memory of Julian Wort ‘We raised £762 at the Disco on Saturday April 24th. The evening was a great success, with plenty of Raffle Prizes (over 30) all donated!!!. Our local Football Club Function Room was the venue, kindly made available to us free of charge, as was the Disco, Many of our friends and family came along and also many people who we didn't know, but who had heard it advertised on our local radio station (3trFM) and saw the many posters and local newspaper write ups.’ Shirley Wort

My daughter Debbie selling the Bingo Books with my youngest grandson Oliver, and on the next table my eldest grandson Adam with their cousin Joe sell- Shirley organised a successful Easter Bingo on April 5th and raised £313 in memory of Julian. ing the raffle tickets

Waiting for ‘Eyes Down’

Daughter Debbie and her friends having some liquid refreshment at the start of the evening

My friends and family who helped out on the evening

Some of the raffle prizes

In memory of Leon Ashley Manners "Myself and Jackie Wright held an 'Evening of Clairvoyance' at Norton Christian Spiritualist Church on Nov 28th. We had a wonderful evening and medium Jackie gave some outstanding messages from the spirit world, proving that life does certainly go on" Julie Hatton. They raised £220.

In memory of Grant Mills Director David Gray and Staff at Argent Group Europe based in London NW6 have sent in a donation of £650. Mr D Bruton and the staff at Fairfax Meadow raised money at work in memory of Grant and donated £500. (Fairfax Meadow is a sister company of the Argent Group)

In memory of Ian Willoughby The Kings Arms Hotel in Chipping Norton, have held various fundraising events, including a 'New Year Disco'. They have been long term supporters of CRY. With all their hard work they raised £625 in memory of Ian.

In memory of Jamie Bucknell "A Family Music Evening was held in July 2003. The evening was a huge success, not only did we raise good money but everyone had a brilliant time" Julie Lister. Thwaites Brewery heard they were holding the event and sent them a cheque for £250. The total raised for the evening so far was £1,206 Group Bungee Jump at The Half Moon Pub. "Our local village pub held a Bungee Jumping Day, which a lot of the local people and Jamie's friends took part in. Unfortunately we could not be there because we were away at the time, but we were told that we missed a great day." Debbie Bucknell. Issue 37

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In memory of Nigel Spender "Our son Ian and some friends, including members of The Taibach R.F.C. ran in The Great North Run, to raise funds for CRY. In fact two of the runners were interviewed, the last before the BBC TV live coverage of the event closed down, so there was some publicity for CRY." John Spender "I recently completed the BUPA Great North Run with eleven other members of Taibach Rugby Club and hopefully your charity will benefit by over £4,000 as a result of our combined efforts. " M.G.Davies. The Spender family were present on the night and collected the cheque at a formal presentation on 6th December . With Matched Giving from Abbey National of £500 through Adrian Cunningham, HBOS £500 and Nat West for a further £250 and many more donations in memory of Nigel the grand total came to well over £5,000 The Inner Wheel Clubs of district 15 made a donation in memory of Nigel for £5970.32. The Tywi Carmarthen Inner Wheel donated £300 to Nigel's Fund

In memory of Patricia Gallagher Mary Sarroukh has donated £500 to support CRY in memory of her dear sister Patricia, who died on 20th July 2003 from Cardiomyopathy.

In memory of Mike Scott "We organised a Christmas 'Naff Raff' at the North York Moors National Park, where I now work. They supported us once before with the same raffle. The staff here are great, very friendly and helpful. They were originally going to send the proceeds of the raffle to a cancer charity but decided to try to help CRY. The total of ticket selling was not quite £150.00 so they made it up with the swear box money. Mary says she is the one who has put most into that! Marje Scott Sadly Marje's dad died in November, marje and her sister decided that they would like to have donations to CRY in leiu of flowers and donated £184.

In memory of David Elliot Staff in the Education Department at Durham County Council held a 'Guess who is the baby' competition and had a raffle. With further donations they raised £250. "This donation to CRY is made in memory of a much loved husband, father and son, David Elliot from Durham, who died suddenly in July 2002, aged 34 years. David had a wife, Nicola and two boys, Jack then aged 8 yrs and Josh aged 6 yrs. David was an extremely fit talented sportsman, who competed at the highest level in triathlons. He is sadly missed by all his family and a wide circle of friends and colleagues. By supporting CRY I hope that in some small way we can help raise people's awareness to the work you do and support you in your efforts to provide better screening facilities, so that heart conditions can be diagnosed and hopefully treated" Eileen Elliot (David's Stepmother) 24

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In memory of Brian Southern "Cap Gemini Ernst & Young are pleased to further contribute to the funds already raised by Gary Leadbetter and his Skydiving Team in memory of Brian Southern" Sam Oxford, Community Awards. £600 has been donated Joanne and Joan from Gemelli Hair in Liverpool held a raffle. The prize was a £50 voucher to spend in their salon, thanks to their clients they raised £100.

In memory of Joe Spivey Miss McDermott ran in the Great North Run, she was a good pal of Joe's. Supported by family and friends she raised £164. In memory of Fred Clark (Joe's Uncle) a collection was made at his funeral in lieu of flowers and donated to Joe's fund. £156.86 was raised. Steve Hargreaves a fellow student of Joe's ran The Great North Run in his memory and raised £110.

In memory of Vicky Leanne Johnson Mrs C Gladding listed a BEAUTIFUL faerie with a difference! This faerie has been lovingly made in honour of Vicky Leanne Johnson who was taken from her family as a result of SADS (Sudden Adult Death Syndrome) at the age of just 20 last August. Meet Leah...the very special and beautiful faerie from all around the world. Literally! Four talented artists participated in the creation of this wonderful piece, from the United States, to Scotland and England. All proceeds were donated to CRY in memory of Vicky Leanne Johnson who was taken suddenly from her family The faerie was auctioned on eBay with the winning bid of £257

In memory of Ian Merchant Doug and Dilys Newman had a collection at their 'Drinks Night' for their nephew Ian and raised £260.

In memory of Huey Lewis The family and friends held a Memorial Sports Day in respect of Huey and raised £1,080 in his memory. "Huey, a keen sportsman, was suddenly taken away from us in October 2002, aged just 32 years. He is sadly missed, but his family and friends have vowed to keep in touch by gathering together at sports tournaments to be held at his home club, Kilgetty. It is the wish of his wife and young family that a donation is made to CRY" Paul Mansbridge. Issue 37

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Parachute jump in memory of Scott McCollin CRY

CRY

Family and Friends organised a 'Team Parachute Jump' in memory of Scott on what would have been his 21st Brithday. It had always been Scott’s dream to do a parachute jump when he turned 21. Sadly, he never had the opportunity, so his brother and close friends decided to jump for him. The weather was far from ideal but on the third attempt they were finally given the nod that it was okay. The support (and patience) of the supporters was fantastic - without whom, who knows what excuses they may have made!

Melanie, Louise, Jade, Natalie and Amy - reassuring the jumpers it was perfectly normal to do parachute jumps during a storm

A further donation from The Royal Bank of Scotland Community Cashback Awards Scheme of £1,000 brought the total raised to £5110.75

A final photo before the big jump

Rob (Scott’s brother) and Louise Nesbitt (Scott’s sister in law))

Rob and Louise with their certificates, showing they did complete the jump - “honest”! Issue 37

Lynne (left - Scott’s mum) and June (right) being presented with a cheque for £5110.75 Cardiac Risk in the Young

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The ‘H’ Howard Jennings CRY Memorial Trophy CRY

CRY

Roxanne and Kevin Masters on course!

Christine Osborne concentrating on her putt

Jazmine just about worn out!

Angie using the club golf cart to collect valuable funds for CRY

The Enfield Harriers

The 7th annual tournament took place on Sunday 7th September 2003 and the sun shone for us all day! This year’s trophy winner was Lee Scarborough who used to play golf with Howard. Second Jazmine & Ryan - first for was Jim Hutchens and CRY! third Paul Berry, both representing Enfield Harriers. The ladies’ medal was won by Christine Osborne. This year we raised in excess of £2,300, including £500 from Lloyds TSB. We had the best turn out yet with 103 players. Thanks go to Carole and Ray Jazmine & Kieren ‘Mine’s Haylock and Angie Masters for bigger than yours!’

Oops! Bunkered Steve Lowman

Lilli Jai - all heart!

their continued support. Donations of raffle prizes and trophies were made from numerous sources including Atlas Copco and Hemel Trophies and Jewellers. A big thank you to all who continue to support the event by playing in the tourInto the rough... nament, serving coffee at the ninth hole, raising money through sponsorship, selling raffle tickets etc. This year the tournament will be on Saturday 18th September 2004 at Little Hay Golf Complex. Anyone interested in playing should contact Keeley Ashley via Our smiling heart (Angie the CRY office. Masters)

Mum with Roxanne Masters, youngest player

Dad’s team with ladies winner Christine Osborne

Good match! Bipin, Steve and Tom Martin

All smiles for the Watford Observer!

Christine Osborne receives her winner’s medal

Lee Scarborough - winner of the trophy and longest drive

Jim Hutchens - Second in the competition

Paul Barry - Third in the competition

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Cardiac Risk in the Young

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In memory of Levon Morland CRY

CRY

Another great night was had by all at the second event held by the Morland family on 19th September 2003. Over £5,000 was raised from raffles and ticket sales for the event. Jack Doyle, newly appointed CRY representative, hosted the evening which included speeches from special guests Alison Cox, Founder and Chief Executive of CRY, Dari Taylor MP, Secretary to the All Party Parliamentary Group for CRY and Maralyn Bowen, CRY Representative and Bereavement Supporter. The evenings entertainment was supplied by Barkin' Billy and the Scrapyard Dogs - a friendly group of hard-bitten old rockers fronted by Levon's dad, Jeff. "It was another successful and enjoyable event", says Jack. "The highlight for the Morland family and myself was presenting Alison with a cheque for £20,000 - she knew she was getting a donation but there was a sharp intake of breath when we revealed the actual amount. The demand for tickets far outstripped the number we could physically fit into the venue. Still, 250 people had a fantastic evening and gave generously towards the charity. It's such a good night that we'll have to make it an annual event". Thanks must go to Joanne Roseberry of Roseberry Inns and Leisure, who provided the venue, food and of course her wonderful staff. Thanks also to the sponsors of the events whose generosity ensured that all of the bills were paid and that every penny raised found it's way to CRY: Sponsors Rowley Ashworth - Solicitors, Thompsons - Solicitors, Browell Smith and CO - Solicitors, Northumbrian Water Ltd, National Union of Mineworkers, Amicus/AEEU

The friends of Levon Morland at Consignia, Sunderland have donated £300. The Fencehouses and District Ladies Darts League have raised £200 in memory of Levon. The team of runners from Durham Sixth Form College raised £2,000 in the 2003 Great North Run in memory of Levon. Andy Gilmore participated in the 2003 'Cycle Jaunt' for CRY. The cyclists rode the Coast and Castles route from Newcastle upon Tyne to Edinburgh via the Northumbrian Coast and the Scottish Borders. Reg Rawlinson promoted CRY, and was supported by his work colleagues in the Architectural Division of Property Services at the Civic Centre in the City of Sunderland. Needless to say, the participants on the ride (a serious pub crawl linked with the odd cycle ride) enjoyed the outing and were delighted to raise money for your worthy cause.” They raised £120. Andy Gilmore

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Family Mobile Cardiac Screenings CRY

CRY

Mobile Screening in memory of Lisa Jane Brown - NORTH WALES 8th November 2003 This was my second CRY screening in 2003, and a hugely successful day. This event had been made possible by a generous donation from H J Heinz Charitable Trust in memory of my daughter Lisa Jane Browne. I am sure that many people do not understand just how much hard work goes into organising these screening events, but with the help of our CRY Screening Administrator, Jan Smith, everything fits into place by the day of the event. We had 40 clients come along for screening. Our MP, Mark Tami, came and spent a short time with us, to meet our team, before we all began our duties. Mark has been extremely supportive of CRY and has helped out with media coverage, and has promised to give us his continued support in whatever way he can. We had fantastic media coverage for this screening event, and this has raised a huge amount of awareness of Sudden Death Syndrome, and the fact that screening can save lives. The Manager at The Beaufort Park Hotel, Mr Adrian Barsby, gave us complimentary accommodation for the Friday evening for two members of the team who had travelled from London, and complimentary rooms for the venue for the Saturday. This was tremendously generous of him, and I really do appreciate his kindness. Dr Jayesh Makan headed our screening team. The ECHO Technicians were Jan Forster and David Oxborough. The ECG Technician was Adele Oxborough, and The Screening Manager was Tony Hill. My husband Terry, along with colleagues Joan Broadbent, Christine Poyner and Emma Poyner supported me. Everyone was extremely dedicated to his or her duties. We were also host to CRY Teddy and QT Kanga. They received lots of love and cuddles, and had their photographs taken by many people. CRY Teddy is the host in the UK for QT Kanga who is visiting from Australia. They are campaigning to raise awareness of Sudden Death Syndrome and get a national petition asking for an International Disease Code with the World Health Organisation recognising the syndrome. We managed to obtain 70 signatures on the campaign petition. CRY Teddy and QT Kanga are adorable cuddly friends, and they are so well behaved too! We were all very tired at the end of the day, but had a huge feeling of satisfaction. My sincere thanks to you all. Doreen Harley A Collecting Bucket was placed at the venue, with donations from Mr Standring, Miss Yearsley, and several anonymous donors they raised ÂŁ203.08. Mobile Screening in memory of Leon Manners

Julie Hatton held her first mobile cardiac screening in memory of her son Leon at the Eston Sports Accademy. This was the first event in which the new mobile screening unit was used, enabling CRY to set up to three private rooms in one much larger room. Mobile Screening in memory of Laura Fox The Foxes held a mobile screening in memory of their daughter Laura who died at 13. 30

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CRY

Ullapool Screening in memory of Joanne Fotheringham by George Moody

CRY

On 29 September 2003, we got agreement from CRY that an ECG testing session could be held for the young people of Ullapool. We had six weeks to advertise, to obtain masters and copy the necessary paperwork, issue packs and appointment times, arrange 2 ECG machines to be sent from CRY, arrange for approved nurses from Stornoway to work the machines, arrange ferry travel, accommodation, meals etc. I also had to go to Ullapool to see the facilities available to us for the screening and meet various people including the Head Teacher of Ullapool High School. In order to be financially viable CRY asked us to have a minimum of 100 young people and a maximum of 200. Arrangements for a follow up test by an echo technician and an interview with a cardiologist were still to be finalised. All expenses incurred had to come out of the Joanne F Fotheringham Memorial Fund. But let's start at the beginning. Where is Ullapool? Who was Joanne F Fotheringham? Could we cope undertaking an ECG screening without CRY personnel being present? Ullapool is a picturesque village of 15,000 inhabitants on the North West of Scotland in Ross-shire 626 miles from London. The nearest airport is 74 miles away, the nearest hospital is in Inverness 65 miles away, the nearest train station at Garve is 32 miles away. It is the ferry port for Stornoway on the Isle of Lewis. The main secondary school for the area is in Ullapool and has just under 400 pupils. It is a new build, community school and was first used 5 years ago. As well as the normal school facilities it incorporates the Macphail Centre which contains a community library, a community theatre, several community education offices, a tea bar and full cafeteria facilities. All this under the one roof. Pupils travel to school daily - often on single track roads - from as far north as Lochinver (37 miles), Gruinard on the west (39 miles), and inland to Aultguish (30 miles). Five doctors are based in the Ullapool medical centre - they moved to the new premises the week before our screening - two others are based in Gairloch, one in Scourie and two in Lochinver. So despite the hospital being so far away, there is good medical cover for the area. Joanne F Fotheringham was a 24 year old teacher in Bayble School in the Isle of Lewis where I was Head Teacher. There were 108 pupils between 5 and 14 years old in the school and Joanne taught a composite class of 24 Primary 3 and Primary 4 pupils. During the Easter holidays in 1997, Joanne died in her sleep. She was a fit, healthy, enthusiastic young lady with no history of health problems. Her parents - Alex and Fraser - along with the school pupils and all who knew her, were absolutely devastated. The staff and pupils in the school built a garden as a memorial to her (see photograph) and her parents started to raise money in The Joane Fotheringham Memorial Garden on the Isle of Lewis order to screen other young people in Lewis and in Ullapool so that no other family suffered the same trauma as they had done. 289 people were screened in Lewis in 2001 and we were now to fulfil the Fotheringhams' wish to screen people in Ullapool. Although we got the go ahead on 29 September 2003 for the Ullapool screening, we were in a bit of a panic with the paperwork as we did not receive the last of the necessary masters until 15 October. Although there are standard masters, we had to adapt them to the rural area of Ullapool. There was the 6 page psychological questionnaire plus covering letter, the 2 page medical letter, a 2 page introduction letter from CRY, a consent form, and a personal letter from me stating that Cardiac Screening was being offered in Ullapool on 12 and 13 November financed by the Joanne F Fotheringham Memorial Fund. The first job was to get 200 copies of these 13 pages printed, a return envelope addressed to the Ullapool Library and all put inside another envelope for issuing. These packs were done in Lewis and then sent via Caledonian Macbrayne Ferry to Alex Fotheringham in Ullapool who gave them to the Lochbroom Leisure Centre in Ullapool, the Main Library in the Macphail Centre and to Ullapool High School for people to collect. We advertised in the local Ullapool News, had a front page article in the Ross-shire Journal and a snippet in the national Press and Journal. We did various interviews with the local radio (I had a 12 minute slot the day I went to see the facilities in Ullapool) which was repeated in their prime time on Sunday morning. Other people did interviews and we had broadcasts on BBC Radio Highland and also on BBC Radio Scotland. There were posters distributed throughout the area and Alex Fotheringham made sure that all who she saw knew about it. Advertising is very important and Alex did a wonderful job. For the full report go to www.c-r-y.org.uk/ullapool.htm

Alex and Fraser (Joanne's parents) received a gift aided donation of ÂŁ1,000. from their friend Lt. Colonel John G Moncrieff after their ECG screening in Ullapool. Issue 37

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Bulletin Board CRY

CRY

Christmas Cards We will soon be looking for help in distributing our Christmas Cards and Christmas Card leaflet.

If volunteers could approach local business to see if they can adopt CRY.

We are also looking for a few volunteers to give up half day a week from September - December to work in their local ‘Cards 4 Good Causes’ shop in 2004.

RING FENCED FUNDRAISING - IMPORTANT CHANGES Those of you who have been involved with CRY for a number of years will have seen how CRY has evolved and how our office policies have changed to accommodate our development. We now have to introduce a change that will greatly facilitate the management of our ringfenced funds and also help us cover our increasingly ambitious initiatives ie funding our CRY Research Fellow; the CRY Postcard campaign. Currently funds can only be ringfenced after a family has been with CRY for 1 year. Our Trustee Board have now requested that funds be ringfenced after £5,000 has been raised for CRY core funding. Ringfenced funding always has to be defended to our auditors and Trustee Board at our AGM (imminent!). Adopting this adjustment will not only allow us to maintain the current policy of ringfenced funding but hugely simplifies the way ringfenced funding is managed and will pacify both our auditors and our Trustee Board. NB: if you request a CRY Golden Bond London Marathon place or a CRY Great North Run place the money raised will go to CRY core funding initiatives. We are unable to put the money raised through CRY Golden Bond London Marathon places or CRY Great North Run places into ring fenced funding. If you have a memorial fund all money raised will automatically (provided it is clearly identified) be included in your memorial fund. Blaze is an organisation best known for their Firewalking Experience. If you are interested in something completely different - like learning how to walk barefoot across broken glass, experience being a fall guy or bodyguard or ‘simply’? surviving the call of the wild for 5 days and nights - you may finally have found the place to be. For more information on these events either contact the office or go to their website www.blazefirewalking.com. There are a number of different events on offer to those who are wishing to fundraise for CRY.

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Zip Wires, High Ropes Courses and Raft Building - you can be taking part in all these exhilarating activities and more as part of a unique two-day residential adventure Challenge being promoted by CRY. CRY is currently looking for teams of eight people to take part in this nation wide Team Challenge which is taking place at purpose-built Outward Bound centres set in idyllic locations across the UK. Teams take on a variety of mental and physical challenges over a two-day period which is designed to promote teamwork within an enjoyable outdoors environment in the Lake district, North Wales or the Scottish Highlands. No previous experience is needed as all training is provided and if your team raises the minimum sponsorship level of £2,800 for CRY then all your team members get to take part for free!

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Places are now booking up for the 2005 London Marathon. If you are interesteed in running please contact the CRY office or register online by following the heart runners from the home page.

If you would like more information please contact the office.

Please give me a call or email me if you have any Please bear in mind when If you would like CRY to consuggestions on how you organising fundraisings that it sider any item for Bulletin would be brilliant if you could take would like the content of Board please email your fundraising pages to photos of your great day. It is (cry@c-r-y.org.uk also essential that when you write be laid out in the future. or fax (01737 363 444) in to the office, that you clearly details through to Steve

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state how much was raised, by whom and if it’s for a specific memorial fund.

Best wishes Steve Cox Cardiac Risk in the Young

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