CRY Update Magazine - Issue 38

Quarterly Update Issue 38

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.

CRY

Meet our Representatives Vera Looker

CRY

"Hi, my name is Vera and my husband is Geoff. In 1989 my husband was working in Stevenage and commuting down to Hampshire where we were running a small business. On Friday, July 21 the family met up in Canterbury with the exception of our two middle children, one had flu and the other was on holiday in Turkey. The occasion was to attend and celebrate our eldest daughter receiving her honour's degree. We looked at them with pride, Anne smiling and happy and Michael, a very tall handsome young man standing beside her. At the end of the day Michael drove Anne and his Nan back to Portsmouth and I accompanied my husband in his car.

Saturday passed uneventfully, Michael, the youngest of our four children, spent most of the day painting the bungalow and then helped his father move some heavy sacks. In the evening he borrowed my car and went down into Portsmouth to help his sister as a shelf had come off the wall. When I returned the following morning from a night shift, the car was precisely parked in the drive at the side of the house. It was quite early so I went straight up to bed for a few hours. As I passed Michael's room his dog pushed the door open and came out to greet me. Michael was laying on his left side and looked comfortable.

There was no warning of the tragedy that was to occur later. I can only remember it as an ongoing nightmare. My distressed mother woke and directed me to Michael's bedroom. Michael lay on the floor on his left side with his knees curled up to his chest. As I turned Michael on his back he took one long shuddering breath and then David, Michael and Vera was still. There was no pulse and no apparent heartbeat. I commenced mouth to mouth resuscitation and my mother phoned for an ambulance 3 times before it eventually arrived half an hour later.

In the meantime, she contacted Geoff, who had been sorting out bits and pieces to do with our business. On arrival he immediately took in the situation and helped me to try and revive Michael. When the ambulance men eventually saw Michael, they were not hopeful and gave him oxygen via a face mask before taking him to the local hospital. The hospital A & E department tried to resuscitate him but eventually told us that there was nothing more they could do. My fear by then was that if he was resuscitated he would be badly brain damaged.

We passed the next week in a daze. The only official contact being from the police who had had to seal off and search Michael's room as it was an unexpected death. It was four days before the results of the post mortem were made available to us. A close friend and her husband took over the running of our business for us. We met our youngest daughter at the airport with the terrible news. The funeral had been delayed because we knew that she would want to be there.

The death certificate stated that Michael had died of idiopathic cardiomopathy and that he had died of natural causes. I just could not understand how a fit and healthy 21 year old could have died of natural causes. I wrote to Aldershot where Michael had undergone a medical assessment a few weeks earlier. He was delighted when he was passed medically fit and offered a career in the army. They wrote back to say they could not reveal the information I was asking for. When I wrote to the coroner, he sent a kind letter back in reply but was unable to give me any further information. The coroner then passed my letter onto Michael's GP: It was the doctor who had treated Michael for a viral infection who visited us. She had been on holiday when the news of his death had been sent to the surgery.

As she was not his regular GP she had not known of his death immediately. She was very kind and likened his death to Infant Cot Death in Children. We were told that he would have needed a heart transplant had he lived. I still felt that I did not understand. When I worked as a health visitor I had understood that it was not possible to diagnose the cause of the cot death. Michael had died of a cardiomyopathy and therefore there was a specific cause of death. I wrote several more letters trying to obtain the information that I felt would help me understand why our son had simply got up from his bed in his room and died.

The breakthrough had come when we saw a programme on the TV that featured Sudden Death Syndrome. Listening to Professor McKenna we then began to understand what had happened. We wrote to him and it was through him that we were all eventually offered an ECG and an echocardiogram. The letter he wrote back also informed us about an organisation that had just been started by Alison Cox and offered support to families who had lost a close relative with SDS. Although I contacted them, apart from leafing through their magazine, which I found almost too painful to read, I did not pursue any contact with CRY at that time. It was not until some years later that I phoned CRY for some reason and talked to someone called Fran. We must have talked on the phone for over an hour. I then phoned back on several occasions and was always delighted to find Fran on the other end of the phone. At first the talk was of Michael and then turned to other things. Also she sent me a lot of information and finally an invitation to the first Bereavement Support Day. It was a day that was both painful and very informative. In the morning there were several highly qualified speakers including Professor McKenna who talked about the conditions that can lead to SDS. Another speaker spoke of the role she played in training interested members of CRY, most of whom had experienced a similar bereavement, to become Bereavement Supporters. This made an impression on me, especially as just talking to Fran on the phone had helped me so much. I found that talking to someone outside the family allowed me to talk freely without causing pain to others. Since then, I have had a lot of contact with CRY. I now have a better understanding of what it is trying to achieve. I am currently taking a course on counselling skills and theory to become a Bereavement Supporter. Undertaking the course has also helped enormously. I now find that I can talk of Michael where before I was reluctant to as it always ended with me in tears. I now hope that I can help someone in the same way I was helped. CRY is now beating the drum at Parliamentary level, trying to focus awareness on abnormal heart conditions in the young. A very strong case has been put forward for the raising of awareness amongst all medical personnel, arranging for the necessary screening of close relatives, and a set of procedures for giving information to relatives.

Screening would have alerted us to Michael's heart condition and may well have extended his life. Italy has in place a mandatory obligation to screen everyone who represents competitive sport; this includes all school children. I look for the day when we can do the same in this country for all young people.

It is 15 years since Michael died and I am now very involved with our five grandchildren, the youngest almost 3 months old. For them alone I would like to see mandatory screening of young people."

CRY

Issue 38 Newsletter by the Chief Executive

CRY

It is remarkable that in this, CRY's 10th Anniversary Year, we are able to celebrate the introduction of a new chapter in the National Service Framework (NSF) on Arrhythmias and Sudden Cardiac Death.

It is widely acknowledged that this new chapter was instigated by the support received for Stockton South MP Dari Taylor's Cardiac Risk in the Young Screening Bill, debated in the house last March and backed by CRY's successful lobbying of MP's.

Dari's Private Member's Bill "pushed a foot in the door" which had previously been kept firmly shut. Lobbying through our Postcard Campaign will maintain this pressure with the aim being to engage every part of the UK in our efforts to keep the profile on young sudden cardiac death.

August: The response we have had since the publication of our SADS booklet last February which has a dedicated www.sads.org.uk website, and Dari's Bill has resulted in a 30%+ increase in our office workload and the employment in August 2004 of 4 new members of staff taking our total to 13.

Dari Taylor MP & CRY famillies at the NE Postcard launch paign by Tyne Tees TV, Dari spent time talking to each of the families that attended before returning to canvassing support in Hartlepool for her colleague Iain Wright - one of whose first decisions on being elected was to join our CRY APPG.

This included a researcher to undertake a study addressing the issues raised in the NSF document, specifically focusing on families who had suffered a bereavement due to a young sudden cardiac death. Anecdotal evidence from interviews with those affected by a sudden death, suggested that young people with heart conditions were being treated differently to older people with heart conditions - with young people finding it much harder to get their heart concerns taken seriously. Thus, in focusing on heart conditions in the young (under 35), the study sought to explore this under-researched area.

Special thanks to Maralyn Bowen for organising this event, our supporting families from Tyne & Wear, Cleveland, and Durham; Thorn Lighting for their sponsorship in memory of Levon Morland, the Redcar Cricket Club for donating the venue and lunch, and Ann Wilson for the delicious iced fruit cake she made that included the name of every young person on the North East Postcard.

Our consultation document went to 600 selected bereaved CRY families. 150 (25%) respondents yielded important research data and our first analysis of this information has been submitted to the Department of Health.

The South West launch of our Raising Awareness Postcard Campaign was organised in Exeter, Devon by our newly elected Representative Chris Pitman. Chris had been a successful athlete until he collapsed and was diagnosed with cardiomyopathy, and then had to redirect his ambitions to focusing on the coaching of elite athletes. Special thanks to Chris and the Exeter Arena for allowing us to use this venue, our supporting families from Devon, Somerset and Cornwall, and Ironbridge Runner for their sponsorship.

September: 20 CRY delegates were invited to attend the Department of Health's consultation meeting for the new NSF chapter. This new chapter on Arrhythmias and Sudden Cardiac Death was called by the National Clinical Director of Heart Disease Sir Roger Boyle, who is Chair of the committee of experts who directed 4 sub-groups. The over-riding view from our delegates was that though there was great potential for progress to be made, young sudden cardiac death represented such a small statistic (4%) of the total deaths, that there was a real danger of our tragedies being obscured by sudden death in the older age groups.

This threat was the inspiration for our Postcard Campaign.

The North East Postcard launch was organised by Maralyn Bowen our Divisional Representative, at Redcar, Cleveland.

The contest for the Hartlepool Labour seat vacated by Peter Mandelson was belatedly announced to be on the same day as our launch which unfortunately meant our supporting Labour MP's were unable to attend. However Dari made a diversion from Hartlepool through Redcar to join our launch making an

October: Some of you might remember reading the dramatic story 6 years ago of 21 year old Julie Mills who collapsed and was rushed to 3 successive hospitals as medics fought to save her life. She arrived at the John Radcliffe Hospital 20 minutes before full organ failure and was put on life support with the use of an artificial heart. Julie's heart was rested for 5 days while the virus Myocarditis ravaged her heart. Her miraculous survival led to her subsequently re-evaluating her life and I am most grateful that in the re-organisation she has volunteered to help us and will be managing our Surgery Supporters programme.

A special thank you (as always) to Dr Sanjay Sharma for giving up precious family time on a beautfiul Sunday afternoon to

Tony, Kerry, Sanjay, Julie, Louise and David at the Surgery Supporters Club meeting attend the final 2004 meeting of our Surgery Supporters Club.

Our intrepid travellers come from all parts of the UK to attend these unique meetings, have counselling, spend time with their peers and to talk informally to a consultant cardiologist which is undoubtedly the highlight of the event.

This month witnessed the first of 5 Sudden Cardiac Death and Screening sub-group meetings held in the Department of Health. The select group chaired by CRY Patron Professor Bill McKenna had 3 CRY representatives invited; our Chairman Dr

The first meeting addressed Professor McKenna's full agenda, debated screening issues and included an idea developed by Robert Hall (Medical Director of the Cardiomyopathy Association) of the implementation of an appropriate Referral Pathway so that there would be no further danger of families 'slipping through the net.' Robert's initiative anchored the importance of consistency in dealing with both the event of sudden cardiac death, and prevention, and has provoked on-going discussion at the highest level as to how these should best be handled.

The South Postcard launch was held in Charlbury, Oxford.

Special thanks to Hugh Mulcahey, for organising this event, our supporting families from Hertfordshire, Hampshire, Buckinghamshire, Berkshire, and Oxfordshire who attended, The Bell Hotel for donating the venue and the Royal Bank of Scotland for sponsorship in memory of their employee Scott McCollin.

November: Our 2nd sub-group meeting focused on the crucial role of the Coroner. Professor McKenna and I also collaborated on an information booklet produced for members of the subgroup, identifying their area of expertise and pin-pointing changes they would like implemented. This booklet was given to all those that attended our sub-group meetings, and the Department of Health.

The North West Postcard launch was held in Stalybridge, Greater Manchester. Special thanks to Dave Pover for organising this event; the Stalybridge Football Club for donating the venue and our delicious hot soup, our supporting families from Greater Manchester, Lancashire, Merseyside and Cheshire who attended and contributed to the lunch and Irene Wickers for securing sponsorship from JDI Flooring in memory of Neil, with a further contribution from Beach Displays in memory of Andrew Parr.

ITV Granada Report covered the launch highlighting the sudden death of brilliant young footballer John Marshall who died in July 1995 the day he was due to join Everton after attending the FA School of Excellence in Lilleshall for 2 years. An excruciating aspect of John's tragic death was that if he had lived another 10 days his condition would have been identified at the screening of the Everton youth squad. This was the first cardiac screening event in football and organised by team physiotherapist Les Helm. The story of John Marshall and the support of the Marshall family launched CRY in 1995.

James Purnell MP

Stalybridge and Hythe MP James Purnell squeezed in a flying visit to the launch, leaving a filming commitment to talk to us and the press, before rushing onto his next appointment in Spain.

December: The 3rd meeting of our sub-group addressed genetics. Professor McKenna also invited a contingent from Northern and Southern Ireland to attend including Michael Green, Trustee of CRY Ireland, who have been collaborating with the instigation of a specialised sudden cardiac death clinic at the Mater Hospital in Dublin.

The evening of the same day found the CRY team at our first APPG meeting in the House of Commons. Guest speaker Sir Roger Boyle explained to MP's his hopes for the new NSF chapter congratulating CRY on their "exemplary lobbying" and com-

Dari, Sanjay, Kevan and Sir Roger Boyle mending the progressive rise in awareness of sudden death conditions in the House, amongst the general public, and the clinical groups.

Sanjay Sharma outlined to MP's the medical issues that we were confronting and the meeting concluded with the celebration of Dari's 60th birthday with a cake we had bought to mark the occasion to surprise and thank her for the fantastic contribution she has made to our progress. Our APPG has enlarged from 7 prior to Dari's Bill to 65 at the present time.

Shortly before our Christmas break we totalled the number of cards sold this year which amounted to a staggering 21,700 cards = ÂŁ7,160 gross. Very special thanks again to John Bennett whose beautiful painting for CRY's 2004 Christmas card, in memory of his daughter Laura, was of Bradley Village Church, Staffordshire.

I would also like to take this opportunity of thanking our office volunteers - David Meikle and Pat Ure who have done such sterling work for us every since they joined CRY in 1996; June Dollard our mailshot expert, without whom our unprecedented number of 1994 mailshots could not have materialised; and Elaine Dunne and Joan Clarke who spent so many hours in the office each week translating our Christmas card orders into deliveries.

Special thanks go as well to Maureen Ward, who, after 8 Bradley, Staffs painted by John Bennett years has retired as our doughty Representative in Wales. Maureen was one of the first families to organise a CRY screening, spoke inspiringly at our Screening Seminar in Wolverhampton in 2000 about the importance of never giving up the fight for our screening programme, and has been an ardent supporter of CRY since she first joined us in 1996 after the death of her son Caradoc.

Also special thanks to Sheila Clarke who has now retired from the job of Volunteer Merchandise Distributor after 7 years of energetic and efficient supervision of the mailing of CRY merchandise from her home.

Our 10th Anniversary year holds great promise for CRY and we are hopeful that our first Raising Awareness week from June 11 - 18 will further promote our goals and highlight our achievements.

To mark our first decade we have designed a 10th Anniversary badge, available from the office. Our absolute hope and belief is that, thanks to the incredible commitment of our supporters whose call for change has been heard in the corridors of power, we can finally afford to be hopeful. We can now trust a future that offers unprecedented grounds for optimism to reduce the toll of suffering through young sudden cardiac death, and recognises that our tragedies

Report from Steve Cox CRY

CRY

Last autumn we employed 4 more members of staff and hope the struggle to keep our update sent out on time will start to abate! Those whose write-ups have been ‘held over’ please be patient! We will endeavour to include them in Issue 39 which is already underway. Over 40 articles are already in the next Update waiting to be published as well as some fantastic write ups of memorable events.

Please keep sending in your write ups and photos, with captions if possible, and whenever possible to put the text in an email. Once again thank you for going to such incredible efforts with your fundraising.

I would like to take this opportunity to say how much I appreciate the tremendous commitment of Tony Hill for putting together this update at a time when we have been under enormous pressure in the office as a result of the extra work required for the National Service Framework NSF Consultation document We would like to thank everyone who contributed to the NSF CRY consultation Questionnaire. Kerry has been busy entering all your responses and producing reports, the first analysis of which has been submitted to the Department of Health. This is the first time that such a document has been produced, taking in the experiences of so many people. The document should not only help in guiding this chapter in the NSF but also policy decisions in the future.

Newspaper - Raising awareness articles There are a great many raising awareness articles being published now and we are trying to make sure that as many as possible are in the updates. If articles are very similar we select the most comprehensive one (or include it as a thumbnail). If you have had an article published in a number of papers but prefer one of the articles please email me (or call) and we will ensure this is the one included. Alternatively, if you are unhappy with a particular published article, (newspapers have been known to make the odd mistake!) please notify us that you would like this article excluded.

New staff in the CRY office For those of you who have called up the office recently you will have noticed some new voices as we have recently employed 4 new staff members.

Maria and Sue jobshare with Sue working in the mornings and Maria afternoons. Both Maria and Sue will be the first point of call on the telephone.

Kerry is developing our research Programme.

Pat now has grandma responsibilities and so has handed our thankyou letters to Maria. If you have any queries please call her.

Pat will still be actively involved in the Memorial Funds and helping us out whenever she can.

New website pages Updating web pages Kerry is updating all the ‘out of date’ pages on the website. If, when viewing the website you come across a page that you feel needs updating please email us the link and Kerry will investigate. The website has over 400 pages, so there is a chance that we may miss one or two when reviewing it!!

Annual fundraising events If you hold an annual fundraising event please forward the details through to Kerry to set up a page in our ‘Upcoming events’ section. Please think of the CRY website as a place where we can help you to promote your event, set up links to online donation pages, as well as provide updated information on where people are meeting, and updated prizes like with the Foxes auction (page 31) If you have an event that you feel we should be informing others about please email Kerry with the details and we will include it in this section.

Web volunteer If you are a person who enjoys surfing the internet and have a little time you could spare maybe you would like to help us with the CRY website. Please contact me in the CRY office. Any extra support would be much appreciated.

My stories A number of projects have been “on hold” but we are now ready to take them forward. One of these is the ‘my stories’ section of the website. This is a place for you to share your story with others.

New web site - CRY Centre for Sports Cardiology The new CRY Centre for Sports Cardiology Website has just been launched with details of all up and coming clinics. Go to www.cry-csc.org.uk for more information

London Marathon 2005 / Great North Run 2005 Places have now booked up for the 2005 London Marathon with over 70 runners once again. If you know of someone who is donating their place to run for CRY please ask them to email their details through to me so we can keep them updated on meeting places before and after the race.

Places are starting to fill up for this years Great North Run so please email ASAP if you would like to run this year. The minimum pledge for a guaranteed entry is £350.

CRY

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

Hello and welcome from the CRY Centre for Sports Cardiology. It is with great pleasure that I introduce a new member of staff. Anthony Shaw is our new Screening Co-ordinator and has already made a tremendous impact within the programme. Anthony's main job here will be to co-ordinate the whole National Screening Programme that has dramatically developed in the last few months. Since my last report we have screened England Netball, Great Britain Rugby League, the England Rugby National Junior Academy, Great Britain Basketball, and Bath and Loughborough LTA Academies. With many new screenings booked for 2005.

The CRY Centre for Sports Cardiology has tremendous potential and we are increasingly being recognised as the UK’s leading centre for sports cardiology. Most athletes that we have examined have been referred to us by cardiologists from other regions. This is exactly how the centre should work, by providing specialist care when nobody else knows what to do.

Caroline Gard is doing a fantastic job with her CRY ECG clinics at Colchester Hospital. Caroline has shown great determination in getting the county of Essex to take note of sudden cardiac death and the services CRY provides towards the local community. Dates for the Colchester 2005 clinic are now available on CRY CSC website (www.cry-csc.org.uk) I would like to thank (in no particular order): Dave and Adele

Launch of the CRY Centre for Sports Cardiology Website www.cry-csc.org.uk

Oxborough, Jan Forster, Kate Dougal, Jon Pither, Lorna Carby and Sharon Tomlin without whom the programme would simply not exist. Sport is a unique world, and most screenings are done at the weekends. thank you to all for dedicating so many of your weekends to CRY. Anthony and I have now completed the CRY Centre for Sports Cardiology and National Screening Websites. These will provide full information about every CRY clinic in the UK. I would appreciate if you could go to the link www.cry-csc.org.uk website and give us some constructive feedback about how we can improve the website to meet your ever high standards. the Screening Team at Rugby League

Mat and Anthony.

Report from Tony Hill - CRY Family Screening Manager As you are aware Mat and Anthony have taken over the Sports and School Screenings. This has enabled me to spend more time in the office in particular helping Steve clear the huge backlog of articles and write ups for the CRY Update. I am also in the office for any CRY Families who feel they would like to host a screening event. If this idea appeals to you contact me on 01737 363222. I am currently in the office on Monday, Wednesday and Friday. Three Family Screenings were held last year; Margo Wright in memory of Mandi Blake, the Wickers/Staff Families in memory of Neil and David and Kenny and Maralyn Bowen in memory of Ian. I would like to thank the families and the Screening Team for all their hard work in making the events successful.

My London Marathon CRY

CRY

On October 21st 2002, my brother Huw Lewis died during a game of football in Saudi Arabia, where he had lived and worked for over four years. He left his pregnant wife Sarah and 5 year old daughter Molly, as well as a devastated set of parents, siblings, friends and colleagues. Huw`s death was additionally hard to take in as he was extremely fit, having played semi-professional football for many years.

He was also training to take part in the 2003 London Marathon.

Huw was not just my brother, but he was also my best friend and we had grown up playing sport together, drinking together and laughing together. Our closeness was compounded by the fact that whilst I studied at University in Swansea, Huw was living and working in the city and then, when I moved to Cardiff to do a Masters degree, Huw also ended up moving to the city with his work. Therefore, even throughout my student days, Huw was a massive part of my life.

All I remember about the moment Sarah phoned me and my girlfriend Lucy to tell us that Huw had died was sinking onto the kitchen floor in our house and uttering an almost primeval scream that came from deep inside me. Somehow, Lucy then got things together enough to drive me to London to pick up my younger sister Becki before we all set off on a rather surreal 5 hour journey home to my parents in Wales.

After the initial shock had subsided, a massive number of questions arose. Why did he die? What caused his death? Is there anything we could have done about it? Would he have felt anything? By a horrible irony, Huw`s wife Sarah was a qualified cardiac nurse and she immediately knew that it could be HCM. With this information in hand, I started searching the internet for any other information. Pretty quickly, I came upon the CRY web-site and, needing to speak to someone who may have some more information, I phoned their number.

My first phone call was with Alison Cox, who instantly put me at ease with her ability to both console me but also supply me with facts and information about HCM. Over the course of the next couple of weeks, things became clearer. However, our family had to endure a horrible 2 week period following Huw`s death before we could even get his body flown home from the Middle East. It was only when his body was returned and an autopsy was undertaken that HCM was confirmed.

Further analysis of his heart tissue by a pathologist further confirmed that Huw had died of HCM. Following the results of Huw's autopsy, CRY very considerately arranged for myself and Becks to visit the British Olympic Medical Centre at Northwick Park Hospital. Once there, we met Greg Whyte, CRY Chairman, who was extremely welcoming and willing to answer any questions we had.

We both then had an ECG and an echocardiogram, followed by a consultation with Dr Nigel Stephens. Thankfully all the tests showed no sign of any abnormality, which obviously reassured both us and our families. My elder sister Sian also had an ECG and echocardiogram a few weeks later and again, no abnormalities were detected.

Approximately 6 weeks after Huw`s funeral, me and Lucy flew to Australia for a long-planned 2month break to travel and watch the England v Australia cricket series. The timing of this was fortuitous as it gave us both an opportunity to get away from home and take in everything that had happened. However, the trip was particularly poignant, as Huw had also been a massive cricket fan and had regularly travelled the world with the `Barmy Army` to watch England play cricket, taking a very large flag with him displaying the name of our cricket club back in Wales. A few weeks before his death, he had sent this flag to me with the strict instructions to hang it at all the grounds we visited. Therefore, on Boxing Day at the Melbourne Cricket Ground, traditionally the biggest day in the Australian cricketing calendar, I was full of emotion as I managed to secure our flag in a prime position on the main stand.

This trip also provided me with a lot of time to think and it was during this trip that I vowed to do all I could to assist CRY in their work in raising awareness of HCM and associated conditions that contribute to Sudden Adult Death Syndrome.

Having attended the 2003 Flora London Marathon as a spectator to watch Lucy`s brother Tom run, I vowed to run the 2004 event on behalf of CRY. Therefore, I applied for a Golden Bond place which was subsequently confirmed late in 2003. Following my acceptance to the race, I began a demanding training schedule, based on a 16-week program obtained off the internet. As with most brothers, myself and Huw were very competitive and proud of our sporting achievements; therefore I wanted to ensure that I ran a decent time in this, my first marathon.

I had run county level cross-country at school and also played a lot of football and cricket, therefore I had a relatively good base level of fitness. However, the next 16 weeks tested both my mental and physical resolve as I religiously followed the set training schedule that required me to run almost every day. The first 4-5 weeks went well as I

CRY

by Jonny Lewis In memory of my brother Huw

CRY

started to develop and the weather became pretty grim. However, during all this training period, I was driven on to run by the thought of Huw and the money that people had sponsored me. My girlfriend Lucy was also a real star during my training, constantly having a warm bath ready for me when I returned from my runs, along with a meal.

Before I knew it, Marathon weekend was upon us. Myself and Lucy travelled down to London on the Friday night before making our way to the Registration on Saturday, followed by a short trip to the CRY Reception. This was a great opportunity to finally meet Alison and Steve face to face, and also to meet other runners who had suffered similar bereavements. It was particularly notable when I met a fellow runner whose brother-in-law had died during a half-marathon, leaving his pregnant wife. The parallels to Huw`s death and Sarah`s situation were similar and my chat with this runner really brought back strong memories.

On to race day and with it, an extreme mixture of emotions. Excitement about the race and the atmosphere, trepidation as to whether I could complete it, nerves about not letting people down, sadness as to why I was running and pride about the training I had put in. I started the race running with Tim Simmons, an old college friend of Huw who was also running on behalf of CRY. The first 4-5 miles were brilliant, with an amazing atmosphere generated by the crowds. We were also both in stitches from laughing, not running, when the two groups of runners from the various starts met and both groups booed and bombarded each other with wet sponges.

At around Mile 6, we agreed to separate, as I was running at a slightly quicker pace than Tim. After a quick pat on the back and a reassuring word, I set off. I was now into a good running rhythm, although it was sometimes tricky avoiding runners in front who veered off to collect water. At Rotherhithe, I saw Lucy and some close friends patiently standing in the rain and this gave me a real lift. Passing over Tower Bridge was another great memory, having watched many marathons on TV. In the immediate miles after Tower Bridge I ended up running with a larger-than-life character who expended valuable energy shouting at the crowd and encouraging them to cheer. As a result, a stretch of about 3-4 miles was run against a soundtrack of almost constant cheers, which made me feel rather important!

Into the Isle of Dogs and Canary Wharf, I was still feeling good. I received another major boost when I saw Lucy again, this time with my parents, who had travelled up from Wales to watch. Seeing the smile on my parent's faces was something I will never forget.

After this, things began to get increasingly harder, although yet another sighting of an old school friend at around Mile 19 helped.

By the time I reached Mile 21, I was into new territory, having never run more than 20 miles in my training. However, although my legs were weary, I never hit the infamous `wall`. Plenty of pasta in the lead up along with decent training paid off and this filled me with confidence. Another notable memory was running over the cobbles at the Tower of London, another image from TV marathons that resulted in a somewhat strange feeling as I realised that this time, I was actually taking part, and not simply watching.

Then onto the last leg of the race and the incredible noise through the road tunnel leading up to the Embankment. This was trumped, however, by my third and final sighting of Lucy, my parents and sister Becks on the roadside, again all wearing huge, proud smiles.

This boost of seeing them spurred me up the Embankment and by this stage thoughts of Huw were firmly in my head. However, one last surprise lay in store for me.

As I turned into Parliament Square I just recall the sheer number of spectators lining the streets. Imagine my surprise when I noted one brave individual apparently hanging off a lamp-post draped in a Welsh flag. Following a quick double take I was amazed to note that it was Lucy`s dad George, with wife Glen below on the pavement.

This final sighting of people I knew drove me on that last mile and a bit and as I turned the corner past Buckingham Palace, I even managed to break into something, which I convinced myself at least, resembled a sprint. I crossed the line in a time of 3:45:06, with a definite feeling of my big brother nodding appreciably but probably commenting that he would have done 3:45:05!

Immediately after finishing and getting my timing chip removed and collecting my medal, a massive wave of emotion hit me as I realised what I had just achieved and why I had done it. Fighting back tears, I walked up to Horseguard`s Parade to meet my family and friends where I was greeted with countless hugs and kisses and more tears. By this time, any feelings of sadness had disappeared to be replaced with an overwhelming feeling of achievement and pride.

We then navigated our way to the hotel where CRY runners were meeting. Here I was treated to an amazing massage and hot bath, plus a celebratory beer. At the hotel, I met back with Tim who had run an amazing race to finish in 3:54. Considering he thought he had no chance of getting anywhere close to 4 hours, this was a great result and we both had wide grins on our faces for the rest of the day.

Following the post-race get together, I returned home, full of memories and emotions of the day that had just gone. As I drifted off to sleep that night, I said a few words to Huw and I know that he heard me and he was smiling.

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Julie’s Interview with Dr Jayesh Makan CRY’s Research Fellow 1. How did you find out about CRY? I had always planned on pursuing cardiology as a career since leaving medical school. Whilst working at Lewisham Hospital, I introduced myself to Dr Sanjay Sharma, a trustee of CRY, who told me about the work that CRY did for families who have suffered a sudden cardiac death and about their aims and objectives.

2. Why did you decide to help CRY in the first place?

When I started out in medicine my aim was to help people in the best way possible. I felt that this was what CRY had set out to do and that the charity made a difference to people’s lives. CRY also had some great ideas for research and a team of people who worked really well together.

3. How long have you supported CRY? Approximately 2 years.

4. I understand that CRY has been funding your position as a Research Fellow to help you complete your studies to become a cardiologist. Where have you been based for this?

I have primarily been based at University Hospital Lewisham, but our cardiac screenings take place throughout the country at regular intervals. In addition I have worked at the Olympic Medical Institute with Mat Wilson, our Screening Manager.

5. Have you had any research articles on your work with CRY published?

Yes, I have been lucky enough to publish articles in important medical journals and hopefully will continue to do so. This is an important aspect of what I do as it translates our findings into information that other doctors can use in clinical practice. I have had the privilege of being invited to the British Cardiac Society and the American Heart Association to give presentations.

6. Congratulations on being the first CRY Research Fellow to get their number to become a cardiologist. What is a number?

What does it take to achieve a number? How do you get it?

A number or National Training Number is a 6 year training post, at various hospitals in a particular region, which leads to an appointment as a consultant cardiologist. Achieving a National Training Number is a big stepping stone into the career of cardiology. To achieve this, a doctor will have had to have completed difficult postgraduate exams and then usually entered into a research programme.

7. Is it rare to get a number?

It is not rare but very competitive. Cardiology is a very popular area of medicine and is heavily oversubscribed.

8. What will this involve and how will your position change?

It is very different to what I have been doing with CRY. This post will be for 5 or 6 years and will be based at different hospitals. This will enable me to learn the practice of cardiology in greater detail.

When I started out in medicine my aim was to help people in the best way possible. I felt that this was what CRY had set out to do and that the charity made a difference to peoples lives. CRY also had some great ideas for research and a team of people who worked really well together.

9. Will you still be helping Dr Sanjay Sharma and CRY? Yes of course. CRY’s work is so important and has helped so many people that it would be an honour to continue to help in any way I can.

10. Is it usual for a charity the size of CRY to have their own Research Fellow?

No, but I am sure more will aspire to do so! It is a unique opportunity to work with a wonderful group of people and to learn about your chosen field. CRY have been truly supportive over the last 2 years and I owe so much to their commitment to me.

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In memory of Gemma Collyer "The 9th Bromley Boys’ Brigade and the 1st Bromley Girls’ Brigade held a sponsored activities day in memory of Gemma Collyer who died in October 2002 aged 20. Gemma was a helper in the Boys’ Brigade Company" Mike Killpack (Captain 9th Bromley B.B.) A further £100 has been raised from the teachers of Joseph Rowntree School in sponsorship of the students who did a charity walk in March.

"As a member of the King's School in Peterborough, and as director of the sixth form revue, the committee of the revue is pleased to present a cheque for over £400.00 to CRY. The King's School puts on a revue every year, where members of the sixth form get to show off their talents and skills by performing on two nights.

We were very successful this year with both nights sold out.

Also we were lucky in that we contacted a parent of a pupil at the school, and they were willing to film the revue for us, so memories could be treasured when the two years join together". Eve Hetherington (Director of the 6th form) & Trevor Elliot (Deputy Head Teacher). The school raised £473.91 "Please find enclosed a cheque for £222.13 that our form has raised throughout the current school year. CRY was elected for our form charity with the majority of our class voting for it in September. We have raised this money by organising lunch sales. We sold sweets and cakes, all of which were made by our form. We also held a 'Guess The Number of Sweets in the Jar' competition. Our class has had a lot of fun raising this money and we hope this donation can help other children not as fortunate as us. Emily Lambert & Aisha Gathani (Charity representatives for 7SS) Via Caroline Gard - Students from the University of Exeter have supported CRY again this year. They have donated £300 Queen Elizabeth's Grammar School, Blackburn. Have held an end of term charity event and raised £275

In memory of Emma Miss Olivia Henderson, at such a very young age, managed to walk a whole mile to raise money for her cousin Emma. It was a very hot day, but with the help of her mummy and the

In memory of Mike Scott The Kirbymoorside Young Farmers have been carol singing for CRY (amongst other things) and raised £100.

Lady Lumley School in Pickering (Mike's old school) have held another 'Non - Uniform Day.' They raised £263.00 "On Thursday the 15th January, at Grainville School, we held a 'sponsored silence day' to raise money for your charity. We were successful, and remained silent for the whole day. The charity is literally 'close to our hearts' as family members have regular heart checks because of problems. We hope that the money raised can be of some use to you. We enjoyed the Silence Day and especially feel good about the fact that we have been able to help you.” Chantelle Liron and Eleanor Perchard Year 7. They raised £38.20 The students from Hitchin Boys' School raised £290.33 from a 'nonuniform' day

In memory of Samuel Hayes "Please find enclosed cheque for £24.00 for CRY. This has been raised by Lucy one of Sam's class mates. She has been making home made cards and selling them at the church hall" Mrs W Hayes.

In memory of Catherine Faulkner " I am pleased to enclose a cheque for £466.00 to help your organisation and its work. The money was raised by the friends of Catherine Faulkner, one of our Year 8 students, who passed away very suddenly earlier this school year. Catherine was a friendly, active and outgoing young lady. She was not at all the kind of pupil whom one might expect to die so suddenly. Consequently, her loss was felt tremendously by her family and her many friends and teachers in school.

Hopefully, our contribution to your organisation will help reduce the number of families and friends who are faced with such sudden loss of loved ones" J Gannon (Headteacher) "Please find enclosed a cheque for £25 which was

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In Memory of Jennifer Pearce The Blue Coat School in Birmingham held a chapel collection. Parents, staff and children raised £150. John H D Jenkins (Revd.) presented the cheque to Roy Ball. The Bluecoat School has donated £650 so far this year.

The girls from St. Margarets and St. Monicas house at The Blue Coat School in Edgbaston sold flowers on Mothers day to raise £500. The cheque was presented when the school unveiled a bench that has been purchased in memory of Jenny who had been a pupil there.

"I have pleasure in enclosing a cheque for £480.60.

The money was collected on Sunday 25th April at our annual St George's Day Parade and service of rededication. The service this year was organised by the Explorer Scout section and they chose CRY for the collection". Jane Taylor (Deputy District Commissioner)

In Memory of Shaun Palmer Collaborators Team Enterprise have auctioned a hanging basket made by one of their Young Enterprise Team and donated £15 to CRY. "Shaun was the brother of one of their members". J. Blankley. Teacher.

Pupils from Blossom House School were fortunate enough to attend the Wimbledon Tennis Championships, and the Kids Zone. The school donated £250.

In Memory of James Wood Gill (James' mum) has been busy selling CRY merchandise. She visited Broxbourne CE Primary School, where Mrs Millhouse dedicated an assembly to CRY. Gill has also sold merchandise elsewhere and raised a total of £221.00.

In memory of Scott Donkin "I herewith enclose a cheque for £96 raised from a raffle held at our Mini/Youth section presentation night. We are donating it to CRY in memory of Scott Donkin who tragically died a few years ago while playing for our under 11's". Keith Newbigin.

In memory of Jessica’s dad - Alan "We are year 7 pupils at Greenbank High School. Our names are Jessica Tiffin, Rebecca Spencer and Linsey Dixon.

We have been having cake sales and we have raised £16.75 in total and hope that your charity would accept it towards research of a worthy cause.

The reason we chose CRY was because of my (Jessica's) dad, Alan who died of the sudden death syndrome 2 years ago in February.

We also heard that the government will not pay for research and we hope our tiny amount of money will help. We hope you will accept our small amount of money and hope it comes in useful for research and maybe you can find out what is killing such young people and Jessica's dad." Jessica, Lindsey and Rebecca.

In Memory of Philip Abraham "Please find enclosed a cheque for £600.

The money was raised from proceeds of the raffle and programmes from our show 'That's Entertainment 2004' on the 3rd & 4th April 2004 held at The Point, Eastleigh.

The children like to donate to a local charity and trust you

In memory of Andrew Gard Emily, Sophie and Rosie took part in the annual Frinton and Walton Fun Run, and all ran 5 miles with a collecting bucket.

They raised £65.

Julie Tanner (CRY's Kids for CRY Editor) gave a talk about CRY to the 1st GT Oakley Girl Guides. The girls enjoyed the talk and donated £11

In memory of Dominic O’Loughlin "Please find enclosed a cheque for £50 being a donation from Westend Juniors A.F.C., Best Wishes" Barry O'Loughlin.

Clarendon House Grammer School held various fund raising events by Somerville

Members of the CRY APPG CRY

MEMBER OF PARLIAMENT David Amess John Austin David Atkinson Vera Baird Harry Barnes Anne Begg David Borrow Richard Burden Andy Burnham Patsy Calton David Cameron Martin Caton Rt Hon Jean Corston Hilton Dawson Janet Dean John Denham Jim Dobbin Sue Doughty Julia Drown Roger Gale John Grogan Chris Grayling Mike Hancock Dai Havard Doug Henderson Ivan Henderson Stephen Hepburn George Howarth Joan Humble Huw Irranca-Davies Rt Hon Michael Jack Brian Jenkins Kevan Jones (Chairman) Nigel Jones Fraser Kemp Rt Hon Oliver Letwin Julian Lewis (Vice Chairman) Rt Hon Helen Liddell Ian Liddell-Grainger Tim Loughton John MacDougall Rosemary McKenna Dr Lewis Moonie Meg Munn Denis Murphy Sandra Osborne Adam Price James Purnell Rt Hon Joyce Quin John Randall Ernie Ross Christine Russell Bob Russell Mark Simmonds Dr Bob Spink Gisela Stuart Hugo Swire Mark Tami Dari Taylor (Secretary) Mark Todd Rudi Vis Nigel Waterson John Wilkinson Betty Williams David Wright Iain Wright Derek Wyatt Sir George Young

CONSTITUENCY There are a total Southend West Erith & Thamesmead 68 MP members Bournemouth East CRY’s APPG Redcar North East Derbyshire as of 14/02/05 Aberdeen South South Ribble Birmingham, Northfield Leigh Cheadle Witney Gower Bristol East Lancaster & Wyre Burton Southampton, Itchen Heywood & Middleton Guildford South Swindon North Thanet Selby Epsom & Ewell Portsmouth South Merthyr Tydfil & Rhymney Newcastle upon Tyne North Harwich Jarrow Knowsley N & Sefton E Blackpool North & Fleetwood Ogmore Fylde Tamworth North Durham Cheltenham Houghton & Washington East West Dorset New Forest East Airdrie & Shotts Bridgwater East Worthing & Shoreham Central Fife Cumbernauld & Kilsyth Kirkcaldy Sheffield, Heeley Wansbeck Ayr Carmarthen East & Dinefwr Stalybridge & Hyde Gateshead East & Washington W Uxbridge Dundee West City of Chester Colchester Boston & Skegness Castle Point Birmingham, Edgbaston East Devon Alyn & Deeside Stockton South South Derbyshire Finchley & Golders Green Eastbourne Ruislip - Northwood Conwy Telford Hartlepool Sittingbourne & Sheppey North West Hampshire

MP’s with special Interest RT Hon Michael Mates

East Hampshire

MPs with special interest

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of in

CRY’s Postcard Campaign in 2004 CRY

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1) MIDLANDS - 15th July 2004 Venue: House of Commons, Westminster.

Sponsored by: Johnson Apparel

2) SOUTH WEST - 26th August 2004 Venue: Exeter Arena, Devon.

Sponsored by: Ironbridge Runner

3) NORTH EAST - 30th September 2004 Venue: Redcar Cricket Club, Redcar.

Sponsored by: Thorne Lighting

4) SOUTH - 29th October 2004 Venue: The Bell Hotel, Charlebury, Oxford.

Sponsored by: Royal Bank of Scotland

5) NORTH WEST - 26th November 2004 Venue: Stalybridge Celtic Football Club Sponsored by: J.D.I. Flooring Ltd

Marathon Memories CRY

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We would like to thank all the runners who supported CRY at the 2004 London Marathon. Over 70 people ran for CRY and raised over £100,000. This is once again a truly fantastic effort which not only raises the profile of CRY but also helps fund our Core Initiatives.

Our runners this year included: Stephen Alford, Shaun Attwood, Walter Bacon (OP), Richard Ball, John Barnes, Scott Beckham (OP), David Bishop, Simon Bissell, John Boer (OP), Clare & Helen Bower, Barrington Bradley, Andy Brown, Colin Brown, Paul Brown (DNR), Ben Butler, Rosemary Castle, Gary Clubb, Phil Collins, Elizabeth Comben, Daniel Connolly, Danny Cook, Laura Crosby, Lyn Davies, Stephen Dennehy (OP), Colin Dooling, Terry Dyett, Joanna Farmer, Trudy Fawcett, Andrew Frankel (OP), Ed Fry, Malcolm Fudge, Fiona Game (OP) Robert Gilbert, Chris Ginley (OP), Beth Golding, James Greenwell, Peter Haddon, Nick Harris, Tony Herd (OP), Barry Hill (OP), Mark Howland (OP), Mark Hunter, Angus Jackson, Paul Jones (OP), Elaine Kirwan, Erik Layton, Jonathan Lewis, Steven Little, James Macdonald, Vivienne Macdonald, Jennifer Mackay, Gavin Major, Lorraine McDonagh, Clive Middleton, Shane Mott, Tom Naylor, Martin O'Connell, Chuks Onwere, Dean Phillips, Samantha Potts, Vito Russo, Debra Russo, Fari Shams, Kevin Shute, Tim Simmons, Alexander Smith, Simon Smith, Andrew Stock, Gary Stoker, Steve Stroud (OP), Clare Thomas, Roger Vermoter, Jan Vincent, Greg Whyte, and Adam Willard (OP). (OP = Runners who donated their Own Place to run for CRY) We have included just a few highlights of the event. Thank you to those who sent in their photos.

Clive Middleton, Greg Whyte (CRY Chairman), Richard Ball and James Greenwell after the race, they came in just over 3 hours, the first costumes to cross the line.

For Mat Wilson, the challenge of running in a heart costume was not enough, and so he decided to get a little support with the CRY sail. Having found that the wind had an uncanny habit of blowing against him he employed Teddy and Kanga to sit on his shoulders (the best seats in the house) as his cheerlead-

Barry Bradley infront of Tower

Tom Naylor (right), with the support of his running partner James Macdonald in a heart costume, raised over £10,000 in memory of Craig Johansen. Craig was Tom’s good friend and brother in law. He collapsed and died whilst run-

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The Weary Traveller Annual Bowling Day by Roy Ball Kidderminster - 29th August 2004 In memory of Andrew Ball

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The day began for Gill, Sheila from London, my Granddaughter Catherine and compulsory friend in tow (Rosie), with brilliant sunshine. Just after our fun day had started it began to rain, but luckily only for about ten minutes and then out came the sun again (hooray!).

The Weary Traveller plan for this day throughout the year, and my sincere thanks go to Kathy the Licensee and her staff who raised £251.00. Lorraine and her team on the BBQ raised £175.00; and Kathy with the raffle raised an amazing £417.00. Thanks also to the auction man selling hampers, and Tony and the team with the bowling.

The efforts of my Granddaughter Catherine and friend Rosie selling balloons; Sheila selling badges; and Rob Cott’s donation, brought the grand total raised to £1,168 - another record for the Weary Traveller! The Weary Traveller event is now in its 6th year and every year they have improved their total. I also took the chance to have supporters of CRY at the Weary Traveller complete my last 32 postcards for the campaign to raise awareness amongst MPs. As a piece of school homework, Roy's Granddaughter, Catherine, wrote the following summary of the event Raising money for a charity by Catherine About the charity My chosen charity for this project was CRY (Cardiac Risk in the Young), as in 1980, my Uncle Andrew died while playing football, at the age of 16, through a heart condition called Cardiomyopathy. There are different types of Cardiomyopathy, Uncle Andrew's was called Hypertrophic Obstructive Cardiomyopathy, which can be abbreviated to HOCM. Although he died in 1980, my grandparents, Mum and Aunts still grieve for him.

As eight young people die suddenly every week, CRY are campaigning to get 14-35 year olds tested. This is because that is the age range most affected. I am tested for it every 3 years (after the age of 13 this increases to every year), as was my cousin Robert (age 24). My younger cousins Francesca (age 7), Morgan (age 5) and sister Phoebe (age3 1/2) are due to start being tested when they are 8.

Catherine Turner and Rosie Watts seen here It is vital that if a younger sibling dies in a family, the brothers, sisters and blowing up their CRY balloons for the race parents (immediate family) are tested. If any of the family have also contracted it, say for example the father; it is again very important that their immediate families are tested.

CRY is now international, as a branch has been set up in Ireland.

The event Rosie Watts and I decided to do our fundraising event together, and as every year, on August Bank Holiday at The Weary Traveller, there is a Flat Green Bowling Competition. With a barbecue, raffle and balloon race, with all of the money going to CRY, we asked if we could run the balloon race (which my Uncle Tony is usually in charge of). Travel was no problem, as I go every year with my Nan, Granddad, Sheila (family friend also involved with CRY), and I am allowed to take a friend anyway.

We arrived at about half past one, and Rosie and I helped to put up some of my Granddad's posters around the back walls of the pub. Then it was off to write the labels to go on the balloons. They had my Uncle Tony’s address on, for the balloons to be sent back.

The balloons would cost £1 each, and the person who bought the balloon that went furthest won £10, and the person who sent it back they won £10 Five minutes into it, we had already sold five balloons, as Sue Smye (Helena’s - another one of our friends mum), had given Rosie £5 beforehand. After writing a number of labels, Rosie decided that we should go and ask people if they would like a balloon, although after about ten minutes we stopped because we wanted to go and have something to eat. But while Rosie was allowed to go and buy herself a burger, I had to write more labels out! When I had written out at least twenty more, Nan decided that I was allowed to eat my sandwiches and packet of crisps. My Auntie Julie, cousin Robert and his girlfriend Jo turned up just then, Auntie Julie giving me and Rosie a Mars Delight each!!

Then, all of a sudden, we were bombarded by children, all wanting balloons! Rosie and I took it in turns to blow up the balloons, and we let the younger children send their own balloons off. I was definitely the worst at tying the balloons up; I accidentally let go of the balloon, so that it flew around the bowling green.

All of a sudden, it began to rain, and we all huddled under the shelter, laughing at the poor fools playing bowls! Luckily for them, it stopped raining after a couple of minutes, only to start again a few seconds later.

After the rain, we went round selling the balloons again, but soon we found that nobody else wanted to buy one, many people mistaking us for the people selling raffle tickets! On our way back to let off the single balloon that we had managed to sell, three boys asked us for balloons, obviously hoping for freebies!

As we had failed to sell many more, Rosie and I gave up, and went off in search of a hotdog. Fortunately, nobody came to buy a balloon while we were eating, so we got to have a rest. When after five minutes, still no one had come for a balloon, we started playing volleyball with an inflatable football. But we soon stopped when it almost went over the fence!

Rosie and I bought a balloon each, and I bought Phoebe one as well. Granddad came up with an idea to sell some more balloons selling them for 50p to keep. This got rid of a few, and some people wanted balloons to send off.

Our hundredth balloon went to Mollie, a little girl who had sent 3 balloons off altogether. She also bought a balloon to keep, and wrote her name and phone number on a tag, and sent it off. Her little brother Daniel didn’t want her to let go of it, so ran after it. As Robert had not seen this, he thought that she had let go of it by accident, so he reached up and grabbed it back down! It went in the end though! Rosie and I went to see the auction, where someone paid £3 for a box of Quality Street! Someone also bought two huge multipacks of Doritos, and passed them around the children. When I had them, nobody would take them off me! Rosie was the only one who thought to look at the best before date, and we discovered that they were out of date! Needless to say, we didn’t eat any more after that. By then it was half past seven, and we had to go because Rosie needed to be home by eight o’clock. We raised £142, but

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Dominic Lilley Select vs. Aston Villa Old Stars Charity Football Match

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CHARITY FOOTBALL MATCH - raising awareness of Cardiac Risk in the Young. Birmingham - 8th August 2004 On 5th July 2003, Dominic Lilley, a popular 20-year old from the Yardley area was having a quiet drink with friends in a bar in Birmingham City centre, when he collapsed. Despite being fit, slim, young - in fact outwardly a picture of health - Dom had suffered a cardiac arrest.

A young couple in the pub administered CPR until the paramedics arrived, and following 'shock' treatment Dom's heart restarted strongly. Unfortunately, Dom's brain had by then been deprived of oxygen for a period of time, causing significant mental and physical disability and he remained in a coma for almost four weeks. He is now undergoing a lengthy and frustrating rehabilitation process at Moseley Hall Hospital. It has not been possible, so far, to establish the cause of his cardiac arrest.

Dom, a former student of Cockshut Hill School in Yardley, was an active sportsman and played for the school football team. Dominic is a former regular at the Ring O Bells pub, Yardley, and is always remembered for his sharp sense of humour. Many of his friends play for the Ring O Bells team and were shocked at how someone so young and active could be struck by this undetected heart condition.

Dom's friends have rallied round him, but also want to try and make people aware of this risk and protect others from a similar misfortune.

A Family Fun Day took place on Sunday 8th August 2004 at the Sedgemere Sports and Social Club, Sedgemere Road, Yardley, Birmingham. The day included a football match featuring the Dominic Lilley Select versus Aston Villa Old Stars.

The Old Stars showed why they are such good entertainment, demonstrating their skills on the ball and winning 14 - 0 with some fine goals scored from a variety of angles.

Andy Russell, main organiser, said "The important thing to note is that all the players in the team are people who know Dom, and it was important for each of us that we took part in the game to show our support for him" After the match, Radio Presenter Tony Brandon, from SAGA 105.7 FM, hosted an auction of sports items, including a shirt signed by Paul Gascoigne, and items signed / donated by Liverpool, Man City, Celtic, Rangers, Birmingham City and Coventry City. The auction raised ÂŁ860.

The event raised ÂŁ3,402 and was split between CRY, which aims to raise awareness of cardiac risk in the young, and the City Hospital, Birmingham, where Dom began his recovery.

Several Old Star players supported the charity CRY by completing postcards which have been sent to Members of Parliament to ask them to become actively involved in their All Party Parliamentary Group, launched by CRY President Ian Botham OBE. This Group has been set up to provide a forum for MPs to support CRY's ongoing campaign, and to highlight the risk of sudden death in young people (under 35's) for inclusion in a new chapter on undetected heart conditions being added to the National Service Framework on Coronary Heart Disease.

The organisers' thanks go to the Aston Villa Old Stars team, Kevin Foy for being a late stand-in for injured referee Mike Reed, and all the people who worked behind the scenes to make the day a success.

Dom's progress can be followed on the Family Pages at www.dominiclilley.tk The event organisers would like to thank JD Wetherspoons and in particular Brendan Gilbride for the generous support

Our Fundraisers CRY

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Through Julie John, the Bridge Tavern have had their collecting boxes opened and raised £130.44 Mrs B Shrubb has donated £200.00 from a collection held at her husband's funeral

Mark Fenlon ran in the Berlin Marathon and donated £106.20

Jason Howell had Teddy and Kanga stay with him in Sheffield, and he has sent in £100.00

Susan Mockler has donated £100.00 by Gift Aid

May Reynolds raised £383.00 organising a Sponsored Football Match. The Morgan Stanley International Foundation matched the amount through their Employee Matching Grant Programme. Making a total of £766.00 The Sixes Cricket Tournament was held at Buckingham Town Cricket Club. Barclays Community Programme Matched Fundraising Scheme donated £750.00. "This brings the total to £3,252.00, which is wonderful as we didn't expect such a figure. More importantly the day raised the profile and most importantly was great fun!" Nevile Pritchard. With special thanks to Katherine Murby.

Staff at the Finance Service Centre at Nestle have held a Valentine Raffle, a Valentine Poem Competition, and a Baking Day. Sharon Massey sent in £230

Gilbert Dargue successfully completed the Great Scottish Run (Half Marathon) in 1 Hour 34 Minutes he also raised £231.00

"On the 11th April I and a group of friends organised a local football tournament to raise money and awareness of CRY. We felt this was an appropriate charity to raise money for as a friend of ours had died unexpectedly in his sleep. Unable to find a cause it was classed as Sudden Adult Death Syndrome. Finding this hard to take and never hearing of the syndrome before, we decided to research and we found others who had been put in this situation and were going through the same ordeal. Then we found it appropriate to do something about it. The day went well. We raised over seven hundred pounds, through raffles and donations, and CRY and the syndrome was made more aware of. After the success of the event we are hoping to run it annually”. Mark Naylor and friends raised £723.64 "We are a small group of entertainers (hence the name!) that do shows for charity. I contacted CRY and explained that we would like to raise money for them this year. We staged our show at the end of May and we raised a total of £650.00. This included an auction for a signed football kindly donated by West Ham, which raised £70.00. Annette and Ken Jones (long term supporters of CRY) attended the show representing CRY. There is also a further cheque from LexisNexis for £100. This being a company that one of our dancers works for, making a total of £750.” Sandra Clark 'The Entertainers' Capita Business Services Limited in Westminster have donated £109.

Staff at BAE Systems Advanced Technology Centre in Chelmsford made a collection for a young colleague who died of heart failure. They also held a book sale in aid of CRY and raised £185.79 Donna Pyle from Exeter, along with friends, have held a pub-crawl and raised £500 In memory of her husband Andy

"Two of our ladies, Mrs. Wyn Smith and Mrs. Moreen Brown had a shared birthday party earlier this month and wished to donate their present money to CRY". Derek Thorp. Mrs. Smith and Mrs. Brown of Cameron Walker Court raised £155.

"St. Eval Parochial Church Council in Wadebridge Cornwall, recently held a fundraising event in which a third of the proceeds were for CRY. Earlier this year members of our church lost their 14 year old grandaughter very suddenly and were glad of the support from CRY. Mrs V.A Martyn (Honorary Treasurer) They raised £560

"We held a Charity Event last year in aid of a friend who has suffered heart problems. We wish you good luck in all your work and hope that this may help in a small way".

Jayne Cooper. Jayne and her team raised £1036.90 Mrs. L. Bishop has donated £120. “This money was collected at the funeral of her late mother.” Mrs. Betty Driver.

"Please find enclosed a cheque for £403.36 raised from a casual day and raffle held at our Rotherham office.

In memory of Scott McCollin CRY

CRY

“On the 15th November 2003 it was Scott's 1st anniversary. So 46 of Scott's family and close friends went back to where Scott died, which was in Lanzarote at the go karting track. Scott's Auntie June took with her CRY Teddy and QT Kanga to help raise awareness . They had their photos taken in the cockpit and in first class seats and the captain signed their log book. Also other people at the airport were happy to say hello. When we got to the track we all got together around the cactus that we had planted there when Scott died. And the people from the karting track presented Lynn (Scott's mum) with a plaque in memory of Scott and to say how sorry they all were. Then after Scott's Uncle Ollie had said a few words and said to everyone that we were all here to celebrate Scott's life and that we had arranged for some races in memory of Scott to take place.”

“So we had the men's and the ladies’ LANZASCOTTIE CUP, and the children's medals for competition on the children's Scott’s Cactus at the Lanzarote car track. track (they were all winners). We all took part in our CRY T shirts and later we all went back to Alan and Brynette's home (Scott's aunt and uncle as they live on the island) we had a barbeque and we all remembered Scott as he would have liked us to. Happy and together thanks to everyone.” June Dollard

Family members, friends & Teddy + Kanga gather at the track to remember Scott

In memory of Scott “Staff at NatWest, South of England Corporation Centre, have made a donation of £759.60

Our Fundraisers CRY

CRY

In memory of Jonathon David Casey "Please find enclosed a cheque for £188.30. This sum was donated at the chapel during my son Jonathon David Casey's funeral. Jonathon was a healthy child and a young adult who just suddenly died. The coroners verdict at the inquest was one of SADS. I would therefore like the monies to be used in any research into this syndrome".

Mrs. D Blythin (Jonathon's mother)

In memory of Mrs Monkhouse’s Aunt Mr and Mrs Monkhouse have donated £1000 to CRY from their late Aunt's estate

In Memory of Richard Dawson A collection was made at Richard's funeral and £440.00 was donated

In memory of James Kelly The Rotary Club of Kilsyth have made a donation of £240.00

"Each month, we at Morgan Stanley select a 'Charity of the Month', this year our focus being on Children's Charities. In May we chose CRY, in memory of James Kelly whose relatives are employed at Morgan Stanley. Soft toys were raffled, vendors visiting the centre gave donations, and staff dressed down on the last Friday of the month donating £1 each. As a result of our efforts, we now have pleasure in enclosing two cheques totaling £900.91 to help CRY's campaign." May Reynolds.

In memory of Jeremy Cole Philippa (Jeremy's sister) has asked for donations instead of presents for her forthcoming wedding, she has received £100 in memory of Jeremy.

In memory of Mike Scott "Please find enclosed a cheque for £400.00 raised by a young man called Nigel Holliday. Nigel was a friend of Mike's at 6th form. Although it is seven and a half years since we lost Mike he hasn't forgotten him". Marje Scott

In memory of Suzanne Taylor "Enclosed is a cheque for £400.00 raised by my colleagues at Royal Mail Chester in memory of my daughter Suzanne Taylor. £90.00 was raised earlier this year when we Beryl Ewing (Suzanne’s mum) did a 'Guess the dolls name' compepresents the Charity Trophy to tition, and on the 30th June we held our annual cricket match, and had Eddie (Man of the match) raffle prizes which had been donated by management and local businesses. The day was a great success especially when the early morning rain ceased! It was Staff V Managers so a good day was had by all.

The winners of the annual Cricket Match It is almost five years now since Suzanne died and I am so grateful that my friends and colleagues wish to remember her in this way. They have been so supportive and it helps me so much to know that she hasn't been forgotten by them. Many thanks for your continued support". Beryl Ewing

In memory of David Staff and Neil Wickers The Wickers/Staff fundraising team have been busy yet again! They have organised and held a Raffle and Tombola raising £484. “The staff and customers of the 'Bay Horse' held a raffle with thanks to everyone for helping to raise £429” Janette Hernen. A donation of £173 has been given by Angela Wilson and Granville Staff. Hollands Pies in Baxendale have donated £1000 for a Blood Pressure Monitor in memory of David and Neil. Thanks also to Nell from the Academy and Malcolm Royle and The Grosvenor Hotel on the Isle of Man for

CRY

Aesthete Miniature Horse Show 2004

by Jackie Johnson In memory of Vicky Johnson

CRY

Hello everyone! We had a wonderful day at the Aesthete Miniature Horse Show 2004 in Doncaster on Sunday the 1st of August - an event which was held in memory of our daughter Vicky Johnson.

Vicky was a very bubbly, lively young lady who loved to smile and make others smile. A darling daughter. A mum of Shannon, loving sister to Emma, Donna and Abbie, fiancée of Richard, Niece, Grand daughter and Aunty. She tragically died with SDS on the 31st August 2003, at 20 years of age leaving behind her baby girl, Shannon, just 5 months old.

Vicky with Plumtree Jango Vicky loved our miniature horses and loved showing. We show under Vandeena Show Team. She adored her miniature Colt Plumtree Jango (Tango) whom she had since a foal and her plans for the future were to breed miniatures and carry on showing with the hope that Shannon would follow in her footsteps.

Jane Davenport/Lister & family of the Aesthete Miniature Horse Stud runs this annual show and this year will be the 10th anniversary show... It was open to all miniature horses under 34" and has also classes for up to 42". It is a very relaxed friendly day with many friends in the miniature horse world coming together and enjoying the atmosphere and hopefully with good weather!

Jane kindly offered for the show to be in Vicky's memory at Vicky's funeral in September 2003, which they had very kindly attended. We have been taking part as a showing family for many years with our own miniature horses at this show and have known the Davenport family for many years. We raised a lot of awareness about CRY and SDS conditions at the CRY tent, and we had great weather too which helped to keep a smile on everyone's face!

Teddy and Kanga being asked if they would like a ride!

CRY Teddy and QT Kanga also came along, and had a lovely day in the sun making friends of both the two-legged and four-legged variety! CRY Teddy proved to be very popular with the younger visitors to the show, and there were even a couple of attempts to kidnap him!

The CRY Tent!

"Oh no!" he squealed, as he was carried off by the ear by a little girl who had taken a shine to him. Fortunately I managed to rescue Teddy and place him back with his friend Kanga. CRY Teddy and QT Kanga also managed to hitch a ride on Aesthete Cherokee Chieftain (owned by Ruby Brown). But he took a dislike to them both after a while, and bucked them off! "Eeekkkk" they shouted with disgust, "I think we shall go back to the CRY tent now please" they both said.

The little thief!!

The Foal Supreme Champion was bred by Plumtree Shetlands (now deceased, this poor little foal (Plumtree Buddy Love) sadly died not long after the show) and seemed to get on much better with Teddy and Kanga, although was a little cautious at first........perhaps wondering which Class these two strange little furry creatures were in!

As well as the horse show itself, there was a tombola stall, raffles, a 'name the bear' competition and an auction of items that had been kindly donated at the show. Abbie, David and Richard also handled horses for donations into the CRY fund. Highest bidding on the donated goods was for a lovely mare and foal bronze clock, which was donated by the Davenport family. Thank you to Jane and family.

Other items donated were: a Mini Marvel toy (gladiator) which was donated by Tanya Larrigan of the Mini Marvels Show Team www.theminimarvels.com; a miniature travel rug set was kindly donated by Hallmarked Stud. Although this did not meet reserve and so was Teddy and Kanga get their ride not sold, it will be offered again at another event www.hallmarked.freeserve.co.uk. Thanks to Mandy. Miniature stallions were donated from top studs all over the country by raffle tickets for a free covering to a mare, this was very popular and went well.

This show was a fantastic day!! It raised a whopping £932.65 !!! Thank you to all who were involved with this event!!

The total collected for CRY in Vicky's memory in 2004 including all our fundraising efforts and the online justgiving site website (www.justgiving.com/sads) was a total of £2,475.08. I have made a new justgiving site up in Vickys memory for c-r-y for 2005 , and hope I can raise some again this year for CRY.

Our Fundraisers CRY

CRY

In memory of Ian Merchant Barbara and Dennis have emptied their collecting box and found £99.64. They rounded it up to £200.00. "We have emptied our box once more and have collected £95.30 to which Barbara and I have added, and am pleased to enclose a cheque in the sum of £200" Barbara and Dennis. They have donated £400.

In memory of Ian Bowen The Burden Preparation Golf Society has held yet another golf tournament. Thanks go to Glen Shepherd and Frank Spencley for their organisational skills. "The weather was good and everyone had a great day. This is the fourth event that they have organised for Ian's memorial fund" Maralyn Bowen. They raised £183

In memory of Leon Manners

In memory of David Harry "Yet again Jayson Perfect Manager at the George 4th Public House raised £960 for CRY by carrying out a sponsored hair cut. His fund raising has netted over £1500.The brewery who owns The George 4th (Fullers of Chiswick) are supporting Jayson with various fund raising initiatives." Mark Harry.

Julie (Leon's mum) works at The Beacon Public House, where she has a Collecting Box. The proceeds this time were £102.

In memory of Mark Pover Stalybridge Celtic F.C Limited have made a donation in memory of Mark for £100

Kevin Sayer Memorial Fund - In memory of Matthew Green CRY has received a cheque for £393.95. “This money was raised by my son Colin Forder who was a very great friend of Kevin’s and another friend of Colin’s, James Majoriebanks, lost his best friend in April, aged 19, of Heart Cancer and they wanted to raise some money in memory of them both.

A football match was organised called the Kevin Sayer XI versus Matthew Green XI, and the players were friends of Kevin and Matthews. They had a large raffle and Tombola to help make the money. It is hoped to be an annual event. The other half of the money went to the Royal Marsden Hospital where Matthew was being treated." Mrs. S. Forder.

In memory of Andy Gard Frinton Free Church held a quiz night and raised £323.

M's Nail Bar in Frinton held a fundraising over Christmas and raised £180.

In memory of Mrs Betty Wright Mr. N. Wright from Walton on Naze has recently lost his wife, Mrs. Betty Wright, and he requested donations be given to CRY in lieu of floral tributes. £236 was raised.

In memory of Mandi Blake Margo Wright (Mandi's Mum) has sent in the donations collected at her Family Screening. £220 was raised in memory of Mandi.

"Enclosed is a cheque for £751 and a charity cheque for £50. This is from a fundraising event we

Our Fundraisers

CRY

CRY

In memory of Julian Wort Shirley and her team have been busy - Frome Rugby Club, Kingfisher Fish Shop and a QuizNite, organised by Mike and Angie Bishop, has raised a further £128.33. Friends and family helped to raise £762 at a Disco on 24th April in memory of Julian. "I am sure you will agree with me this was a fantastic amount; We all had a lovely evening." Shirley Wort.

A donation of £139.93 has been received from Mr Bob Morris from Defense Estates, Land Warfare Centre, Warminster. An Easter Prize Bingo fundraising has been held. "I organized the Bingo that was held on April 5th. It was a great success. We had a wide range of players, and plenty of Easter Eggs as prizes, and also a raffle with many donated prizes”. Shirley Wort.

The Bingo night raised £313. Special thanks to Frome Rugby Club, P Rumming & D Francis and Chung Ying Takeaway for a further donation of £107.46

In memory of Margaret McNaughton "Last year, our dear daughter Margaret died. The Coroner concluded that her death had to be recorded as an Open Verdict. Cause of Death unascertained. The Pathologist came to the conclusion that she had died from Sudden Adult Death Syndrome.

We enclose a cheque for £5000 in the hope that it can be put into research of this condition."

Jean & Alex McNaughton.

In Memory of Laura Moss Mrs Maureen Cooke from Abbotsbury has donated £100 being monies collected from her guest house over the past twelve months.

In Memory of Charlotte’s Birthday

In Memory of Damien Kosten "We recently held a dress down day for CRY and raised £132.45. We would like this payment to be included in the money raised by Bob Bailey for his nephew Damien Kosten, who unfortunately died in April 2004" Sharon Rea (Customer Service Officer)

"Please find enclosed £500 cheque which we raised on behalf of my daughter Charlotte Wright on 4th July, to commemorate her birthday. Keep up the good work everyone" Karen Williams.

In Memory of Joanne Russell "Please find enclosed a cheque for the amount of £590.00. This money was collected at my wife's funeral, and my parent's Golden Wedding Anniversary. Could you please use this money for research into Sudden Adult Death?” Mr N.P. Russell

In memory of Lewis Marsh "Once again our nearest and dearest have been giving their constant support. The amount is made up of monies from the football club, the Scouts and the Horrox family. Kim Horrox is a dedicated member of our team and her husband and children fundraise in various ways. The small amounts soon accumulate". Gill Marsh. They raised £1,000

In memory of Nicholas Thorne "I enclose a cheque for £250 in memory of my Grandson Nicholas Thorne R.I.P. I ran in the Flora Lite Women's Challenge last September.

Unfortunately it took a long time to collect all the money. But better late than never." Mrs E.M.Wyatt

In Memory of John Marshall Staff at The Durley Hall Hotel, Bournemouth have been fundraising for CRY again.

Last year they raised £556.00

In memory of Kimberley Stacey

Our Fundraisers CRY

CRY

In memory of Andrew Blow Please find attached a picture from the Andrew Blow fund raising evening held by the Preston Painters and Decorating Association. A casino/race night was held and it was fantastic.

The picture attached features Dad (John) on the right with senior committee members from the association presenting the money raised from the evening. They raised £452.

In memory of Alison Linforth Simon Smith participated in a 10k running race, and his colleagues from The Royal Bank of Scotland, Leeds helped him to raise £100.00.

John (Alison's dad) organised a 'Dress down Day' where he works. Staff at The Royal Bank of Scotland Cheque Centre in Birmingham raised £250.00. A further £150.00 was raised as part of the funds donated at Alison's Funeral.

"Please find enclosed a further cheque for £113 being a donation following A Dress Down Day carried out where I work at Cheque Centre, Royal Bank of Scotland, Birmingham. As I'm sure you will agree, another great gesture from my colleagues!" The Linforth Family.

In memory of Jamie Bucknell Staff at Betty's Café Tea Rooms in York have been busy for CRY, In memory of Jamie. Katy Squire communications manager has sent in a cheque for £5200.34

Staff from Betty’s with their giant cake! seen here with CRY’s County Representative for West Yorkshire Amanda Edgar

“We were proud to raise £2,600.17 for charity in 2003, funds that were matched by the business. The money was raised in a variety of ways, with staff taking part in lots of fundraising events such as a quiz night, 'Golden Goal' competition and a Mother's Day Cake Bake” Sarah Corrie

In memory of Levon Morland Staff at Littlewoods Home Shopping Weekend Shift - Sunderland, have raised £500.00 in memory of Levon.

Staff at Electrolux have donated to CRY. "I am pleased to inform you that you have been nominated by one of our employees as a beneficiary of our weekly money draw. I have pleasure in enclosing a cheque for £200 raised by our employees".

"Please find enclosed cheque to the value of £150 from Pat Swainston. Pat has been a great supporter over the last couple of years and through her fundraising efforts has raised £750 for CRY" Jeff Morland "We are pleased to enclose a cheque for £500 for your organisation.

This money has been collected over the past year by staff members and also members of the public who have contributed their loose change to the charity bottles in both of our public houses.

The Daisy Hill has also run charity nights where the band Barkin' Billy and the Scrapyard Dogs played and the money raised from ticket sales was added to the fund. The lead singer of this band, Geoff Morland, lost a son

CRY

Mountain Mayhem 24 hour mountain bike race

by Rod Mason

CRY

From 2pm Saturday 26th June to 2:57pm Sunday 27th June, I was racing in the solo category of the Saab Salomon Mountain Mayhem 24 hour mountain bike race at Eastnor Deer Park in the Malverns. Apart from the obvious attraction of putting myself through a colossal amount of pain, my objective was to raise money for CRY (Cardiac Risk in the Young).

Many thanks to those who have already sponsored me, and there's still time to sponsor me at www.justgiving.com/rmason. As of August 17th, the total raised so far is £951.05 Anyway… here's how it went...Overall summary I managed 9th place overall in the male solo category with 13 laps. My mission to be top placed single speed soloist was foiled by the arrival of an American hotshot who had done 18 of these solo single speed 24 hour races and was highly rated. At the end, I was just 26 minutes behind him, so it was a narrow defeat despite a great comeback in the latter half of the race - how English of me!

Nevertheless, on a tough and treacherously muddy course, I was very happy with the result given the general consensus that it was the toughest 24 hour race yet in the UK. My mileage was approx 133 miles over the duration of the race (ignoring the distance covered by going sideways in the mud) - a lot lower than previous years but a reflection of how tough the course and the conditions were. The total vertical distance I climbed was in excess of 20,000 feet (quite a lot for a one geared bike!) and my calorie expenditure was approx 15,000 kcals during the race.

Lap by lap report Lap 1 (2pm Saturday) - It had been raining hard all morning, turning the course - which had been dry and dusty on the Friday - into a slippery mud fest. As I strolled the 800m "run" with the other cycling-specific soloists, my motivation was at a low with the prospect of battling with the elements for the next 24 hours.

The course was hilly, with some long tough climbs and some lethal downhill sections. The usual traffic jams occur during the first lap at each difficult section and the rain just kept getting heavier.

Lap 2 (3.33pm Saturday) - I expected the course to improve as the rain dried up. Very wrong! The mud was churned up and thick, making the course even trickier to negotiate.

I take my first fall of many early on in the lap, as the bike washes out and I slide after it.

I passed a mate later in the lap who was competing in a team and was walking - apparently, his 'neck had gone' and he asked me to pass on the message to the next team member. I later found out that he had actually said his "(rear) mech had gone" and I managed to cause some unnecessary panic in the team who thought they were already a man down and would have to take him to hospital!

Laps 3 to 5 - The course gradually dries out and becomes more rideable. The mood amongst the soloists was still quite sombre, though the occasional optimist predicts dry and dusty trails come Sunday. It's not nice to be smug, but it was a struggle to hide the smug knowing grin of a singlespeeder as I saw countless riders at the side of the trails with their bike upturned, poking out the thick clay-like mud that clogged their gears (justified at last!)

The lights go on for lap 5 as the light fades and I enter the quiet and slightly eerie night time.

Lap 6 (10:32pm Saturday) - It starts to rain. Heavily. And I take 3 heavy spills in a single lap. The mist also rolls in, just to make it even more interesting!

Lap 7 (12:34am Sunday) - The rain has subsided, but the freshly churned mud has the same effect as on lap 2 and, combined with the darkness of the night, the course was almost unrideable. It was turning into as much a question of mental strength as physical strength, and I try to keep my thoughts positive, plod on and laugh at the mayhem going on around me. The solo riders seem to be dropping like flies.

Lap 8 (3:01am Sunday) - I'm passed on a descent by the guy I saw earlier on an off-road scooter (that's one less gear than I have!).

I thought he was crazy when I first saw him, but now I'm resorting to a similar scooting technique to survive the treacherous downhill sections (not pretty, but effective). The downside is that I seem to have twisted my left knee and slightly strained the right side of my groin. Pushing off with my left leg is very painful, but it's something I just have to grin and bear for a mere 11 hours more…Lap 9 (5:20am Sunday) - It's light again and I can get rid of the weight of my lights - unfortunately, I can't get rid of the mud that seems to be doubling the weight of my bike! The course is starting to dry out again and the choice of line is again more obvious in the daylight. I'm still struggling with my eating habits with the longer lap times, but liquorice sticks come to my rescue and I munch on one during each of the two long climbs when I have to push the bike.

Lap 10 (7:36am Sunday) - I hear that the American singlespeeder is not far ahead of me after he struggled in the night time conditions. Given how tired I feel, the last thing I need is a chase!

Lap 11 (9:44am Sunday) - At last, there is a dry line appearing on the course and the pace quickens at last (apart from the 4x4 climb which is a shin deep quagmire). I had intended this to be my penultimate lap, but then I start to actually enjoy the course…

Lap 12 (11:35 Sunday) - I'm gradually closing in on the American and reach 8th place briefly.

Lap 13 (1:16pm Sunday) - I start my final lap with plenty of time to spare and try to dig in as deep as I can. I eye the numbers of anyone passing suspiciously to avoid being over taken at this stage, but I haven't quite got enough in reserve to catch the American or the 8th placed solo rider. I finish to the cheer of my helpers, friends and others, politely refusing the beer that I'm offered. I collapse into a chair and sit in a confused daze, whilst my whole body seizes up. And I'm very sick of liquorice!

Thanks to Brant at On-One for sponsoring me and to my trusty helpers and those who supported.

So that's 18th place, then 15th place, then 12th place and now 9th place in my four 24 hour solo races to date. At this rate, I should win overall in 2007...

Our Fundraisers CRY

CRY

In memory of Andrew Ball "Please find enclosed our annual cheque for £100 from Ellen Strong of Wellconstruct Equipment Co. Ellen lost her neice & nephew Emma and James Redmond from Cardiomyopathy".

In memory of David Chance "Please find enclosed a cheque for £1,500 for CRY. This donation is in memory of David Chance.

David died suddenly on 30th December 2003 of a heart attack. He was only 34 years old. David has left a wife Deb, a six year old daughter Alex and a close and loving family as well as a nation of friends and colleagues. Everybody has been left devastated and saddened by his death especially as David was always the life and soul of everything going on around him.

In April this year we decided to have a quiz night with local BBC presenter Paddy Mac Dee, all proceeds raised were to go to your charity. The evening was a huge success and we raised £700.

Also on 30th May we held our annual football and charity day. This event was normally organized by David himself, so this day had extra meaning to it. We raised £800 on this day. There is a massive void in our pub and community and the only way we think we can help it to raise money in David's memory." Anna and Rob Place, The Sun Inn. Tyne and Wear.

In memory of Sheila Sullivan £100 was donated by Robert (Sheila's husband) through Roy Ball. Sheila died after suffering with Cardiomyopathy for a long time. She had finally got towards the top of the waiting list for a transplant when she suffered a stroke so she lost her place.

In memory of Gareth McDonald "Please find enclosed cheque for £100 given by Steve and Vicky who got engaged on Friday 9th April. I prepared the buffet for the party for them and in appreciation they gave me a cheque to go into Gareth's fund" Diane McDonald

In memory of Holly Yvonne Woznica At the request of her Mum and Dad, any donations given in lieu of flowers in memory of 3 year old Holly, were to be given to CRY. They donated £165.14

In memory of Sam Hayes and Jamie Shaw "Dear CRY St Mary's Church has been collecting for you since the death last year of Sam Hayes (11). We regularly support different charities and are pleased to be able to send you this cheque for £260 in his memory. Sadly the village has just lost another young man (Jamie Shaw, 23) to what also appears to be 'Sudden Death Syndrome'. This means that we have decided to carry on collecting for you and hopefully will be sending you some more money later in the year". Reverend Linda Liversidge.

In memory of Joseph Sales Mrs Patricia Sales (Joseph's mum) asked for all donations in lieu of flowers to go to CRY. She donated £410

North Wales Cardiac Equipment Fund - In memory of Lisa Jane Browne Cheryl Evans asked for donations to CRY for her 40th Birthday instead of presents and raised £255.

The Pontybodkin Ladies Guild have fundraised for CRY and raised £300.00.

Lorainne Bentham and Maureen Rutherford have emptied their Collection Boxes from The Flintshire

CRY

Whitewater Rafting In memory of Brian Southern

CRY

Finally the day came! Helped on our way by very generous donations from Warburtons who provided lunch, and a cash donation and Arriva who supplied a 12 seater minibus for our adventure, and a cash donation.

We were to arrive at the White Water Rafting centre at 1pm on Saturday 21st August 2004, however due to the many events being held all over Wales in the summer, we were all delayed, the last of us arriving at nearly 2pm.

So we were quickly given a few instructions as to where to get our gear, wet suits, splash jackets, helmets, and something one us would realise he definitely needed, our buoyancy aids (Life Jackets!).

Our instructors then gave us 6 paddles, “Hang On!” I thought. “There are 7 of us in each boat plus the instructor!” So it was at this point we found out that one of our crew would be sitting in the middle of the boat, holding on for dear life. We were ushered over to our boats, and the instructor started going through some safety rules and regulations. Hold this! Do that when I say that, duck down when I say this, then he said it, If you should fall out, your buoyancy aid will bring you to the surface. One of your crew will attempt to help you back in, but in the event that we cannot reach you, I will tell you which direction to swim in! And it hit one of the other boats crew members, “But I can’t swim” Kayode says. Well that was nearly the end of the White Water Rafting for him, but their instructor made sure he would be able to get himself to the side, should the unfortunate thing happen, and Kayode was allowed to continue.

On the first run, we were all trying to get used to the instructions that our guide was shouting. Following an exhilarating run, we were eager to get our boat out of the water, on the back of the truck, and back up to the top of the river to start again.

By the time we hit the second run, the adrenaline was rushing, and we were ready to go at it again. As before we started off nice and calm, but then as we hit the rapids, our guide was shouting the instructions thick and fast. The next thing we knew was that James was overboard, and we headed straight for the other teams boat. As we reached the other boat, James was still in the water and his head was sandwiched between the two, and the only place he could go was down again! Within a few seconds which felt like an eternity for James, we pulled him out, and onto our raft, then we were straight off again, heading towards the rapids.

At one point we were heading for a bridge, and the instructions were to paddle hard left, but we were heading for that bridge so quickly that I did not have time to put my paddle in the water (I was on the left). We hit it with all the force the fast flowing water could muster, and we bounced sending James straight into the drink again; at this point James was not so lucky, he sailed away from us faster than we could row. He continued straight for a stopper (a dip in the river, creating white water that rolls back on itself). James went straight in and started to roll, he said that he felt the bottom of the river on his hands so he pushed up from the ground and continued on down the river. He eventually swam over to the bank and had to walk further down to get back in the boat.

After that second run, we were all very wary about just how powerful this little river in Wales actually was. We were all holding on as tight as possible, as we went down on our third run, and James tried his hardest to get me out of the boat, but I wasn’t going to allow that! Following the rafting adventure, and we were all cleaned up, we headed off to Bala Lake.

There we had a BBQ supplied by Warburtons, and a few alcoholic drinks, which was great, because we did not have to drive back, as the Minibus that Arriva NorthWest supplied was being Driven by my Uncle.

We would all like to thank CRY and SKYLINE for the experience, Warburtons and Bill Parkinson garage Manager at Arriva NorthWest for the help in providing their services free of charge and thank our sponsors helping us raise £1460 so far and we are still counting. Thank you

Skydiving for CRY

CRY

CRY

Jaslene Khaira from Chilworth undertook a 'Tandem Skydive' and raised £769.18 Judy Bryant from Westbury, Wiltshire performed a skydive "The skydive was just the best experience I've had. It was a fantastic feeling and I enjoyed every minute of it". Judy raised £420

Chris Andrew from Hornchurch, Essex exited an aircraft at 13,000ft for CRY. He performed a 'Tandem Jump' and raised £574 Kerry Bicknell from Telford did a skydive for CRY and raised £350

Geraint Hughes from Gwynedd flew in the sky at 120mph, by participating in a Tandem Skydive. He raised £350 Donna Chipperfield from Barking has Skydived for CRY and raised £350 Isaac Lane from Ross on Wye, completed a tandem skydive and raised £350 Louise Watten from Poole in Dorset undertook a skydive for CRY and raised £350

Kelly Gardiner from purfleet performed a Tandem Skydive and raised £365

Lynwen Gray from Colebrookdale jumped out of a plane for CRY, her skydive raised £350

Sarah Pitt from Wareham Skydived for CRY and raised £350 Louise Owen from Golden Green in Tonbridge executed a tandem skydive and raised £340

Suzanne Scrace has carried out a tandem skydive and raised £350

Nicholas Reed from Little Birch, Hereford performed a tandem skydive and raised £395

Kerry Barker from Blackfield, Southampton carried out a tandem skydive and raised £340

Decky Stainsbury from Dagenham has performed a tandem skydive and raised £350

Sue Warner from Leicester raised £350 by executing a tandem skydive for CRY.

Paul Hawkins from Edgbaston completed a tandem skydive for CRY and raised £365 Jessica Foulds leaped out of a plane for CRY. Her Skydive raised £340

Matthew Chamberlain took part in a 'Tandem Parachute Jump' for CRY and

David Rudkins from Romford, Essex performed a

CRY

The Bionic Babes and Lands End to John O’Grouts In the Pink CRY Bus

CRY

The Pink CRY Bus..... On the Britannia Rescue Truck! ..... With friendly driver

The plan was to take 9 days to drive from Beaulieu to Lands end then to John O’Groats and finish at Portsmouth FC. Meeting up with as many V dub Clubs and supporters as they could with press, radio and TV coverage at each The route stop raising awareness with CRY Teddy and QT Kanga. Unfortunately due to the Pink CRY Bus breaking down almost immediately Julie and Gary had to endure 3 days travelling in the cab of a friendly Britannia Rescue Truck. They were only allowed stop overs in the evening. Dissapointingly their whole plan of raising awareness was floored! But they did decide to go ahead and make the most of it. When most people would have given up. Julie would like to add that the Pink CRY Bus is now reluctantly up for sale. It Teddy & Kanga has had a rebore and new pistons and is now running with Julie at Lands End well. Anyone interested please call the CRY office and we will pass any messages onto Julie.

QT Kanga’s Certificate from Lands End

Dannii-Marie and the Pink Bus with special Number Plate

... And with Gary at John O’Groats

CRY Teddy’s Certificate from John O’Groats

Following the death of their father, sisters Danii-Marie and Laura have undergone tests to see if they too have the hereditary heart condition. They were fitted with ICD's in November 2000 and "haven't looked back since" They have since become members of the CRY SS Group for young people (under 35) who have had or are about to confront potentially life-saving surgery and want to talk to others who have been through a similar experience, including fitting of pacemakers, implantable defibrillators, ICD and ablation. Last year they have begun a unique fundraising project with the help of their Mum. The Bionic Babes, Julie and Gary took 3 collecting tins into work. They had a pleasant surprise when they counted them up as they contained £334.93!

Laura John at Wimbledon CRY

CRY

GAME, SET AND MATCH TO LOCAL GIRL, LAURA Laura John (14) from Southampton took on the prestigious role as official 'coin tosser' for the Men's Singles Final at the Wimbledon Tennis Championships - representing the national charity, Cardiac Risk in the Young (CRY).

It is a sad irony that just a few years ago, Laura was warned that she'd never be able to take part in sporting activities, such as tennis, due to a potentially fatal hereditary heart defect. However, Laura and her older Laura with Alan Mills showing the ‘coin’ sister, Danielle (17) have both been Roger Taylor MBE calling Laura to fitted with lifesaving cardiac implants* check everything is OK and - with support from CRY - can now lead an active life, like that of their friends and other teenagers.

Both were identified as having Sudden Arrhythmia Death Syndrome (SADS) - also known as Long QT syndrome - after crucial screening at Southampton General Hospital in 1998. Their mum, Julie, fought for the girls to undergo the lifesaving tests after their dad Dave died suddenly at the age of 32 from SADS. Laura and her sister were forced to make drastic changes to their lifestyle, stopping all sporting activities immediately. It wasn't until 2000, with the support of CRY that both girls were fitted with the implants that send an electric shock to the heart when an irregular heart beat is detected.

Laura is now a familiar face to many in the South - she is one half of the 'Bionic Babes' along with Danielle. They have travelled across the UK in their converted, pink VW Camper van, raising awareness and funds for CRY. Both girls are being trained in counselling skills to help support other young people who have to have ICD’s Founder and Chief Executive of CRY, Alison Cox, adds; "We “Tossing the coin” are all so proud of Laura and delighted that she was selected for this honour at Wimbledon. She has done so much to help us raise awareness of SADS and is a true example of how early detection and screening can allow young people to lead a normal, healthy life and ultimately prevent another tragic death hitting a family more than once."

Roger Taylor (Davis Cup Captain and former Wimbledon semi-finalist) nominated CRY as his charity choice and invited Laura to spend the day at Wimbledon and perform the famous coin toss on Centre Court. She was a guest of the All England Lawn Tennis & Croquet Club and had lunch in the Competitor's restaurant, before watching the Men's Singles Final with her friend and her Uncle. *implantable cardioverter defibrillator (ICD). A small device that monitors heartbeats and detects irregular beats - it literally delivers a life-saving electric shock to re-start the heart.

Roger Taylor leaves the Royal Box to quickly say hello. The message reads

In memory of Laura Fox CRY

CRY

Over the last couple of years there have been a number of sources of very kind donations that have come to us, some of which were completely unsolicited. This shows that CRY's name is getting noticed and to all the donators we would like to say a very big thank you.

1.

A local band made up of serving Police Officers played a gig at Ipswich Police station and also made a CD, which they sold on behalf of CRY. 2.

The Suffolk Police Air Operations Unit have been selling tiepins and receiving donations at presentations they have done. £904 has been raised so far.

3.

Mr and Mrs Miller of Westerfield, celebrated their 40th Wedding and instead of gifts requested donations for CRY resulting in a fantastic cheque for £250 4.

Mrs Harper, a lady living in Ipswich, heard of CRY in her local paper and over the last three years has raised £575 from garden sales and fetes.

5.

A dear friend of Kate and Robi’s, Stewart Mills, died from a heart attack Robi’s sister Pat seen here with the at the age of 50. His wife asked for donations to CRY instead of flowers at the Mayor receiving a cheque from the funeral and a total of £780.00 was donated.

Woodbridge Shufflers after their 10k run 6.

A local group of willing workers have formed a team called Muscles for Charity, selling themselves to the highest bidder for manual labour and the likes. They have supported both auctions and have also raised further cash from other jobs totalling approx £1000.00. Their website is worth a look at www.musclesforcharity.org 7.

The Rotary Club of Ipswich held a Golf Day, the proceeds of which were split between CRY and another Charity. A cheque for £700 was handed over to Robi at a Rotary Club lunch.

8.

The famous, or infamous Soames Dunk Tank, raised a further £200 at this years Police open day in Suffolk.

9. £873 was raised doing the Great North Run. Thanks to Ralda Attenburrow and Mickey Gillett for their support. Robi had a sweat at this one too…(another thing he said he would never do!!)

10.

Neill and Sara Pearce at the Wickham Market Fish and Chip shop held a charity event based around the shop raising £100 11.

As the result of press interest in the latest auction, a local businessman, with his own reasons for feeling connected, donated £500.

12.

The 2004 Woodbridge 10km road race, organised by Woodbridge Shufflers, had CRY and another charity as it's beneficiaries. The Mayor of Woodbridge handed over a cheque for £500 to Pat Graham (Robi's Sister) after she had completed the run.

There have also been a number of other smaller donations from various sources. Thanks go to everyone who has donated and given us their support.

Kate and Robi Fox

CRY

Kate & Robi Fox - Our Auction Experience In memory of Laura

CRY

Reading this will come as a surprise to Steve who has been pestering us for a write up on some of the things that we have been doing for some time….well here goes.

Back in 2001 after having done a number of sponsored events we decided that rather than just trying to squeeze money out of people for sponsorship (which is always hard work) we would try and do something where they would be getting something for their money, but at the same time still getting their money!!. An auction seemed such an easy and simple idea, especially when thought of over a glass of wine.

We had never done or even been involved in anything of the sort before so didn't really know where to start…so we had another glass of wine, but this time with a group of friends who we were trying to cajole into helping. Eventually a plan was born.

First off we called in a promise made by the then Chief Constable and got the hire of the main Hall at Suffolk Constabulary headquarters at a reduced fee. Next it was the task of sending out the letters to try and get enough items to make the evening a success.

A friend, Neill Pearce of the famous Wickham Market Fish and Chip shop (see Kangas exploits) agreed to be our auctioneer for the night.

We wrote loads of letters to companies both local and national, all with a CRY leaflet and information. Sara Pearce set off tramping around local businesses and we all were tapping into contacts past and present in an effort to lever items from them.

It was after doing this, with a couple of months to go to the Auction, that the panic started.

Would we sell enough tickets? Would we have enough items? Would people enjoy themselves? Would we think of everything that needed doing? The list went on.

The hall, we knew, would take 250 people so that was the figure that we set ourselves. As the date arrived we had sold nowhere near that many tickets so we set off on a sales drive pestering everyone that moved.

Items started rolling in. This was when we learned to take rejection gracefully, because we got a lot of rejection. At first we couldn't understand why CRY's cause wasn't the foremost in everyone's mind, then you realise that there are a VERY large number of other causes out there, just as important to the people organising them, all with the same idea as us. Nonetheless the last month leading up to the date in July 2002, totally consumed our life either with arranging, begging or just worrying.

On the night of the event we had sold about 150 tickets, which as it turned out Bidding is fierce as the Auction gets under way was probably an ideal number for the venue and for atmosphere. We had removed some of the smallest items (as we had about 120 and weren't sure of the time) and put them into an adhoc prize draw which our daughter Sam and her Grandma set about selling tickets for.

Kate organised Sara, Sharon, and Pam and between them they set up the "Admin" desk to keep track of the sales and also take the money.

Paul Soames kindly set up his disco equipment to provide some background music and also to do a bit of a disco if the time didn't go to plan (See we had covered everything going wrong!!).

Neill was all prepared and togged out in his best suit and bow tie, and our son Mark and Robi busied themselves with looking busy and important.

Caroline Gard opened the evening for us with a few words about CRY and then we were straight into it.

We were amazed… the evening passed by without a hitch and appeared to be enjoyed by everyone in the room. Bidding was furious, helped on by some quickwitted humour from Neill.

All told, after paying all the bills, we had made well in excess of £7000, which was way beyond our wildest expectations. Over the following weeks there were also knock on amounts coming in as a result of the auction.

In memory of Laura Fox CRY

CRY

work and worry than we had expected.

Over the following months we had numerous comments from people who had been there about how much they had enjoyed themselves, and from people who had heard from others how good it was and were sorry that they didn't buy tickets.

No really we're not going to do another one.

Then we were given a pair of football boots signed by the Manchester United and England player, Phillip Neville.

Well I suppose we could do another one. We do know what to expect this time after all. It shouldn't Robi's sisters Pat and Sue along with Rob be as much work, should it? Soames sweating over a hot bucket during the Prize Draw Oh all right let's do another one! So at the beginning of 2004 we set off down the same trail, but this time with our eyes a little wider open. The new Chief Constable kindly donated the use of the hall again, Neil agreed to do the honours as auctioneer again.

All the letters were written and sent off. Sara retraced her steps around the local business community. And the big wheel was back in motion.

"The Admin Dept", Sharon, Sara, Pam and Kate keep tabs on who has bought what and who owes what

We did learn from selling tickets the first time that people always asked what we had to sell, so you would duly hand over a list, but had to add that things were coming in all the time so it was probably out of date. So we struck on the idea of making an online catalogue so that everyone could visit as and when they liked to get an up to date list. This was a job for Dave and Steve in the CRY office. After warning them both that we would be pestering for updates on a regular basis they agreed to set up a link from the main website.

We weren't sure quite how it would work but it went like a dream. Thank you guys so much for putting up with the calls and keeping it in such good order.

We must be completely honest and say that although we had been through the process before, it didn't really make it any easier. You still have all the same doubts and fears, plus the added pressure of whether it would be as good as last time. We had told ourselves that the previous one was so successful in raising money we should not expect the same thing the second time round. It still totally consumed our lives for the few weeks leading up to the date, again in the middle of July.

When the night arrived everything slipped into place nicely. Ticket sales were about the same.

Sam and Mark receiving a cheque for £1224.12 from Chief Insp Liz Pettman of the Suffolk Constabulary Police Federation

We planned the prize draw in advance this time, with Robi's sister Sue doing the organising and his other sister Pat helping on the night. Rob Soames added his sultry tones for the drawing of the winning tickets. (As he had done on the previous night).

Our daughter Sam opened the evening with some information about CRY and an update on what we had been doing since the last Auction.

During 2004 the Suffolk Police Federation ran a prize draw and they used the night of the auction to hand over a cheque for £1224.12. This was handed over by the Chair of the Federation, Chief Inspector Liz Pettman at the interval and was received by Sam and Mark Fox. It was a complete success and after all the bills were paid we made over £8000. The photos of the night say much more than we can in words.

We really must pay VERY special thanks to some people whom without we just would not

Mark does a sterling job of demonstrating some of the items on sale

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 2005.

RING FENCED FUNDRAISING

Please remember that unless you notify us and get the necessary documentation and confirmation from the office for “ring fenced” fundraising before you start a fundraising venture, all funds raised will be used for CRY Core Funding.

Retrospective “ring fencing” is unfortunately just not possible. CRY cannot be responsible for any “ring fenced” fundraising unless it has been authorised.

“Ring fenced” fundraising is for specific projects only. After the successful conclusion of the authorised project, fundraising will be directed again to CRY Core Funding.

Because of the appeal of certain projects, some will have a waiting list.

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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. 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!

If you would like more information please contact the office.

Great North Run - 18th September 2005 In many respects the Great North Run rivals The Flora London Marathon, with more starters and finishers. It has grown in its 22 year history to become the world's biggest half marathon and biggest running event in Britain with 47,000 entries. If you are interested in joining the CRY team 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 organising fundraisings that it suggestions on how you to consider any item would be brilliant if you could take would like the content of for Bulletin Board photos of your great day. It is your future fundraising please email or fax also essential that when you write pages to be laid out in details (including your in to the office, that you clearly the future.

item) through to Steve

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

Great North Run Core Funding rec 460 Pete Reeve from Wirral Ran in the Great North Run and raised £285.00 Core Funding rec 490 Mark Lowery from Leeds competed in The Great North Run and raised £101.00 101 : Core Funding rec 568 Ben Chaplin from Southfields, London completed the 2003 Great North Run and raised a total of £219.

Mark Robson £800

Sheila Sullivan’s Poem A Celebration of Life Give me the strength to carry on When everything comes my way.

The daily toil of endless stress is beginning to tell and tears of self-pity are not far away.

Then I look in another direction and the joys of life abound.

In my garden nature's around Blue-tits, Blackbirds and squirrels are to be found.

Then I look again at the loneliness and pain And wonder why I complain.

A friendly smile, a kindly word and that good old cup of tea, What's five more minutes in this world of stress to give to someone else?

I look around and remember the companionship, support and friendly words that the trefoil guild have given me And wish that everyone else Could be as fortunate as me.

At home a loving husband, two girls full of life, love sound and abundance energy.

A four legged companion whose devotion abounds Until her playmates are found.

Yes I did feel sorry for myself At the start of the day But all my thoughts of self pity fade away as in my bed I lie at the end of the day.

(A poem written by Sheila for the Festival of Talents held at Guide Hall)

KIDS : Charity Tea Party - What a success!

I am 11 years old and will be starting Grammar school in September. My new school has set me a number of challenges including raising money for a charity of my choice in a manner of my choice.

I have chosen CRY because I know a number of people who have died due to undetected heart problems. I am organisiang a Charity Tea Party on 15 August in aid of CRY and wondered if you could send me a few posters and brochures to display and hand out?

photos

Just to say that we have given cheques for £300.85 to Roy Ball, who will put it in the name of Jenny Pearce, whom my Mother knew.

Just to tell you that my charity tea party raised £300.85! We baked thirteen different types of cake, served tea, coffee and soft drinks, organised two lucky dips, had a 'guess the name of the celebrity' competition and 'guess the weight of the fruit cake' competition and sold some birthday cards. A close family friend made 12 swiss rolls which we sold for £1 each - they sold out very quickly! We have taken lots of photographs but are waiting to get them developed.

Roy Ball, one of your keen supporters, is my friend's grandad and he attended my party. He mentioned being able to

obtain a large cheque to present to me, so we will be able to forward you a photo of that too! I will contact Roy and find out what to do next!!

Thank you for all your support with brochures, posters, balloons and the lovely sash which I wore! Many of our guests were not aware of CRY before they attended the party, so we hope we have raised more awareness and generated a few more supporters.

With best wishes for CRY's future success, Helena.

In Memory of Cormac McAnallen rec 785 SCAN (newspaper cutting) (KIDS?) The inaugural Cormac McAnallen Memorial Tournament for year 8 and 9 boys in the Armagh and Tyrone Counties took place in Saint Catherine's College. £2000.00 was raised

BIG DONATION

Pupils from Joseph Rowntree School, York. Took part in the YTC Charity Walk, with the help of Lobo the dog they raised £145 (See Raising Awareness?)

Our Fundraisers

Core Funding rec 830 No 33 (Photo Sent) Mark Avern and three friends organised a 'Marathon Row' They all put their backs into it and raised ÂŁ890

Core Funding rec 796 No 30 Dermot Crean has made a Gift Aided donation to CRY of

Core Funding rec 793 No 31 Mr & Mrs D Allen have made a donation of ÂŁ100 for their

In Memory of Patrick ‘Paddy’ Burns

In Memory of Patrick "Paddy" Burns rec 759 Photos requested No 8 "On 5th July 2003, we organised a charity night in the memory of Patrick "Paddy" Burns who one year previously (July 6th 2002), tragically died in his sleep, aged 34.

Pathologist tests could find no abnormalities and the post mortem eventually concluded the cause of death as "unascertained."

We contacted CRY before the charity night, obviously to obtain "approval" and immediately afterwards you supplied a brief covering letter to acknowledge our fundraising efforts, but more importantly, to offer your full support and best wishes.

The charity night was held at our local pub, the Horse and Jockey, Unstone, Sheffield.

It was an extremely busy night as "Paddy" was a very popular man with many friends and acquaintances.

Although he wasn't married and didn't have children of his own (7 nieces and nephews - whom he adored), family was very important to Paddy. Anyone who knew Paddy was aware that he could light up a room with his huge presence and booming laughter.

We contacted many local and national companies looking for donations, gifts, vouchers, etc. for the "auction/raffle" we were holding on the night. The response was absolutely overwhelming with many, if not all, willing to offer support through providing many excellent raffle prizes.

The local paper (Derbyshire Times) were extremely supportive and also covered the event.

Many thanks go to Colin and Lisa from the Horse and Jockey and especially to Somerfield for generously supplying many raffle prizes and also for tirelessly collecting money in several stores in and around the area.

Also thanks to family and friends who gathered on the night to ensure everything went well and to pay their respects to Paddy. At one point we had an unplanned sponsored "head shave" from one of Paddy's friends, which alone raised over £100.

Following on from the charity night, Paddy's friends and family have also held several further fund raising events in a bid to raise as much money as possible for CRY and also to keep the memory of Paddy alive.

A list of the events and money raised is as follows: Charity Night (Horse and Jockey pub) 5th July 2003 Somerfield - Dronfield Store (donating widescreen TV) Sponsored 10k walk Car boot sale Friends donations Pool tournament Somerfield raffle (several prizes donated)

" a w £ e

On the night we raised a total of £1,068.00.

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£1,068.00 £ 516.50 £ 90.00 £ 80.00 £ 100.00 £ 27.00 £ 110.00

All the money raised is to be donated to CRY, therefore I enclose a cheque for £1,991.50.

We will never be able to get over losing Paddy and feel like we could write a whole book on his life as he always had so many stories to tell. We feel we could all live to see 100 and never truly love and laugh as Paddy did".

Tammy Butler (Paddy's sister)

Our Fundraisers

Philip Abraham Memorial Fund rec 806-807 No 19 Mr Richard Southey sadly passed away aged 68yrs in May. His wife has asked for all donations at his funeral to be placed in Philip's memorial fund as she knew Philip and she has worked at the school for many years. £870 was collected.

Philip Abraham Memorial Fund rec 802-803 No 22 Carole Saunders has donated £100

Philip Abraham Memorial Fund rec 772 No 27 (Cuttings sent) Philip's mum Mary has been working very hard for CRY. She has organised a huge Charity Funday, which was held back to back with her Annual Strawberry Tea held at her home. Mary has also been raising the profile of CRY, and again has been awarded 'The Local Heroes Sainsburys Award' (Sainsburys donated £200 in philip's memory). Mary and her team have raised £1106.39

Jamie Bucknell Memorial In Memory of Michael 'Winkle' Kent rec 821 No 36 Fund rec 801 No 21 (More £ Bar staff and regulars at the George and Dragon pub in Norwich, have held their second pool tournament in memory of Winkle. Two years ago Winkle died in the pub from a heart to Come) attack whilst playing pool. "This year the competition was a little later than planned, Julie Lister (Jamie's Aunt) and friends organised a fundraising event. "We had a super night and as well as raising money for CRY everyone had a wonderful evening" Julie Lister So far they have raised £291.50 (More £ to

because Winkle's 14 year old son was seriously ill with a brain abscess. Thankfully he is making a full recovery. Due to the competition being held on Bank Holiday Weekend this year we raised £116 Mary Shaw (Licensee George & Dragon)

David Bick Memorial Fund rec 832 No 34 "John and I have endeavoured to do a little fundraising on CRY's behalf by holding raffles and collections, nothing spectacular but every penny helps and it also raises awareness of our organisation". Ursula and John Bick They raised £200

Joe Spivey Memorial Fund rec 776-778 No 25 (Photo sent of marathon runners) From left to right they are - Simon, Steve, Mark, Neil, Andy, Katie and Mark "The 20th May would have been our son Joe's 24th Birthday, he always picked his favourite birthday tea. The Leeds Half Marathon is also run in May and again fellow students of Joes from Trinity and All Saints College who are all teachers now paid a touching tribute by running for CRY. It was a really hot day and they all did so well. 13.5 miles around Leeds is hilly and hard going, but they did it with cheery faces (and aching limbs too I expect). Many thanks to them all. Katie dropped her cheque in through kind sponsorship for £100, also one for Paul and Sharon for £50. As well as the marathon, Joanne Ward did an end of college year book which she donated to Joe and sends a cheque to CRY for £89 to CRY. Kath and Andrew Spivey.

100 : Core Funding rec 575. [Sending photos /4/04]

102 : Christiaan Smith Memorial Fund rec 585

From our friends at Cameron Walker Court "One of our resident ladies, Mrs. Joan Newton celebrated her 80th birthday recently and requested that Mr. & Mrs. D Rees recently celebrated their Golden instead of presents that her friends made donations to CRY." Derick Thorpe Wedding Anniversary, instead of presents they asked

103 : In Memory of David Elliot rec. 586 "I enclose a cheque for £140 towards your funds. We raised this money by holding an Easter raffle with colleagues from the Education Department of Durham County Council, where I work. All money raised from the raffle has been passed to 'CRY'. The raffle prizes of an Easter rabbit, duck and chocolate eggs were donated by my husband and I. This donation is in memory of David Elliot, my stepson, who died aged only 34 years in July 2002 from an undiagnosed genetic heart condition, leaving a wife and 2 boys aged then 6 and 8 years. Anything that my husband and I can do to support CRY in your efforts by fundraising will be done, in the hope that other families can be spared the heartache and grief that we have suffered". Eileen Elliot

105 : In memory of Kevin Sands. rec. 587 "We are so pleased that people who have suffered the same trauma as we did nineteen years ago can now get help and advice.

When our son Kevin, age seventeen, died in February 1985 we were totally baffled. We had not had any experience or knowledge of one so young dying suddenly, apart from cot death. The coroner's report was "acute Myocarditis". "It left us still questioning and wondering if we could have done anything to prevent it. Your booklet confirmed that myocarditis can be caused by a virus."

Alan and Peggy Sands donated £200.

104 : In memory of Mike. rec. 588 "Please find enclosed a cheque of £162.50 which was raised through an auction at my sisters wedding. It is in memory of my part-

Our Fundraisers

108 : Jamie Bucknell Memorial Fund rec.

580 "I now have pleasure in enclosing the Rowntree Players' cheque for £660. From the funds raised through a 'bucket' collection after every performance of our pantomime 'Dick Whittington', and the net takings from the 'Charity Night' of the same production, we have found ourselves able to support both CRY and another local children's charity." Miss Shirley Patrick (Treasurer Rowntree Players)

Philip Abraham Memorial Fund rec 505 (SCAN) Team Phoenix Cheerleaders have raised £170.00 in memory of Philip Philip Abraham Memorial Fund rec 488 Through Mary (Philip's mum) Sainsburys have awarded CRY £200.00 from their 'Penny Back Scheme'

In memory of Madeleine Mulcahey In Memory of Madeleine Mulcahey rec 314 (Photos Promised 12.12.03) Hugh and Jane (Madeleine's parents) organised a 'Sponsored Run' and raised £200.00

123 : Stewart Howard Memorial Fund rec. 688 "A car boot sale was held at Tesco, the total amount raised was £1409. Special thanks to The Kettle & Stove for the donation of £100, T. Gillam for giving so many new items to sell at the sale, and finally to all the Tesco staff for all their continued help and support". Jane Howard

109 : Core Funding rec.

634 (photo supplied 124 : Core Funding rec. 690 10/5 + Graphic) 03/06) BHS have held numerous and (Photos Soroptimist International of Epsom and varied fund raising events throughout the year and have made a donation of £7599.73.

BIG DONATION 121 : Colin Doyle Memorial Fund rec. 626

District held a Floral Extravaganza on May 12th and one of their members donated some sponsored walk money, in all £1437 was raised. "It is great to know so many good hearted souls that make this kind of an event so worthwhile" Barbara Watts (President).

"I have great pleasure in enclosing a cheque for the amount of £290, which is the contents of the CRY "Collection" Whisky bottle from the Willow Tree Pub in Langley, Slough. This donation is 120 : In memory of Paul the result of contributions from the Willow Tree customers over Rafferty rec. 637 the past 18 months." Richard "I would like to donate this cheque in memory of my son who died last year from Haynes a cardiac arrest while playing football, he was 21 years old.

In memory of Jamie Simpson rec. 674. No. 129 :

I had a coffee morning last week and a raffle to raise money for you, and if it helps to save another young persons life then that's my wish. My son's name was Paul and I

I put CRY forward this month, as you can imagine it is something very close to my heart and I know all donations go towards helping other families not to have to go

"Enclosed in a cheque for £400, which I would like to donate in the memory of my brother Jamie Simpson.

I work for NatWest bank and every Friday we have a casual dress day of which the employees have to pay £2 every month for, the proceeds of which go to a nominated charity.

Our Fundraisers

In memory of Jenny Pearce rec.

672 (PHOTO Received 25/5) No. 130

In Memory of Samuel Hayes rec 487 Wendy (Samuels mum) has sent in a donation for his birthday. He would have been 12 on the 24th January.

Samuel died on 2nd May 2003 from SDS HOW MUCH RAISED?

"Please find enclosed a cheque for £1500 raised so far for CRY. The money was raised via a dance and a raffle and Mrs. Davinda Palak who held an Indian cookery demonstration raised £500. " "Jenny was 19 years old when she died in her sleep. She was a 2nd year student at Manchester University at the time studying English and Spanish. Jenny was a keen swimmer and skier and had been fit and healthy all her life."Sandra Pearce.

In memory of Samuel Hayes rec. 661. No. 134 Ian Bowen Memorial Fund rec. 658. No. 135 "Redcar and Cleveland Council have contributed £1,000 towards the costs of our CRY Mobile Screening which was held on 2nd October". Maralyn Bowen

In memory of Don Lilley rec. 657. No. 136

"Find enclosed a cheque for £140.

This is in memory of my great nephew Samuel Hayes who died a year ago from Sudden Death Syndrome. I wish this to go to funding more E.C.G. machines. I have fund raised this from friends and neighbours, I wish it was more" Joan Peterson.

In Memory of Joe Sales rec. 718.

No. 143 Jane Fergie from Salford Quays, Manchester has raised £288 by completing the 10k Great Manchester Run in memory of Joe.

Ian Strange Memorial Fund rec. 650. No. 137

A gig was arranged by Wagdog Limited "Would you kindly accept the enclosed cheque in memory of my dear son Ian who will be 27 on 16th May. Ian's birthday is always a very difficult time for me but, in memory of Don Lilley and raised knowing that I am not alone and there are people who understand exactly how I £401.23. feel is a great comfort." Pat Strange.

Our Fundraisers

In memory of John McCall rec.739. No.152 (Graphic 152) "On behalf of Armagh Sports Forum, I have included a cheque to the value of £750 to be donated to CRY on behalf of the McCall family in Armagh.

John tragically died while playing for his country and his family has asked Armagh Sports Forum to donate the money to your charity in his memory." Gerard Houlahan.

In memory of Luke Somerville - Family do not want Press!! coverage. ,amybe ALison should contact..pphot if possible.

Luke died on 12th February 2003 very suddenly from a congential heart defect. He was just 16 and was playing football at the time; he had been playing for 15 minutes and about to take a throw-in from the sideline when he collapsed and died. There was no prior sign of there being anything wrong with Luke and it was a complete shock to us all. We decided to raise money for CRY to help with reserach, and enclose 3 cheques totallying £2,200. £1,00 was raised by doing a sponsored cycle ride from

Core Funding rec 611 No 38 (Photo and write up sent in to Mary) (Mary unaware) £330.00 raised Charity Auction Eddie Farrow

Core Funding Rec. 861. No. 164 (Newspaper Cutting Sent) Nicola Wilcox from Stoke Bruerne took part in the Flora Light Women's Challenge. The support from her sponsors raised £665 for CRY.

Ben Thorn Memorial Fund. Rec. 906. No. 166 (PHTOTO? + Graphic) "Please find enclosed cheques to a total of £4312 proceeds so far from SRC Ben Thorn Cycleothon." Veronica Thorn.

"I have pleasure in enclosing my donation to your charity. I raised the money by doing The Manchester 10K Run. It's the first run I have ever done - I even used to skive P.E at school! I am an anaesthetist and know of several people personally and professionally who have died of Sudden Adult Cardiac Death and I think your charity is doing a good job. I hope the money can be put to good use, I raised more on the web site, which I found very easy to use, Thanks. Dr Helen Bird

In memory of Aaron Lundy Aaron Lundy Memorial Fund rec 5.1.04 £8945.00 has been sent in not sure how raised Dad John CRY's Divisional Rep for Northern Ireland

Core Funding Rec 472 (SCAN) The Medics Revue Company put on a show for CRY £2000.00 + £125.00 matched giving from John Phillis Victoria Phillis - Co -Producer BIG AMOUNT

BIG DONATION