Brochure Update Issue 39
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.
1995 - 2005 CRY’s 10th Anniversary Year 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
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Meet our Representatives: Our Volunteer Co-ordinator for Primary Care Trusts is Dr Clare Hinkley
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My name is Clare and I am the middle of five siblings. At least, that's what I always used to say until the sudden and unexpected death of my sister Jane in November 2003. Since then I have often hesitated before saying this. Faced with the prospect of having to explain to sympathetic strangers about Jane's death, I often feel it might be easier just to mention my living siblings. But in reality I am proud to be the middle of a large family and Jane is still part of that and always will be. Jane was the oldest of us and we all thought, probably the fittest. She loved cycling and skiing, and often went running and to fitness classes. She was 35, married and had two children; Emma, aged 8 and Luka, aged 7 months. As far as we were aware there was nothing wrong with her. That was until the morning of the 8th November 2003 when she just didn't wake up.
Katie, Lizzie, Jane, Philip and Clare.
My husband and I were temporarily living back with my parents, in Guildford, whilst waiting for our flat purchase to go through, so I was there when my Mum received a phone call from Jane's husband, Edwin, at just after 7am on that Saturday morning, saying that Jane was unconscious and there were paramedics working on her. My parents were frantic with worry, but I couldn't believe it was that serious. Jane often fainted, something that we now know was probably an indication of a heart condition, but she also had low blood pressure, so everyone just put it down to that. I thought this was just another (if slightly more serious) one of those faints. Less than an hour later, we got another phone call from Edwin saying that Jane had died. It was an utter, sickening and devastating shock. How could a perfectly fit and healthy young woman just die in her sleep? We all rushed to the Lister hospital in Stevenage to be with Edwin and the children, I didn't know what to expect on a day like that, but I certainly didn't expect to see policemen outside Jane's house and questioning the neighbours. I also didn't expect to go and see Jane's body at the hospital. I wouldn't have done so except for the thought that it was my one and only chance to say goodbye. Although I knew that that image of her would stay in my mind forever, I'm glad I saw her. After such a sudden death I think I would have found it even harder to believe if I hadn't seen for myself that this was no longer Jane and that she really had gone forever. The autopsy took place 4 days later and I was sure that they would find an obvious cause of death. Perhaps a massive brain haemorrhage, after all, for a fit, young person to die so unexpectedly there must have been something terribly wrong. However, the only thing the pathologist could find that was slightly abnormal was a shortened mitral valve anterior cusp, so the cause of death was put as 'Mitral valve malfunction. Aetiology uncertain'. We have subsequently learnt that the post-mortem was very unsatisfactory and that tissue samples that could have helped diagnose a heart condition that could cause sudden death were not taken. We had previously heard news reports about something termed 'Sudden Adult Death Syndrome', so, soon after her funeral we started to search the internet for information about this condition, and that is when we came across CRY. Suddenly we were not alone. There was a whole charity supporting families like ours and, even better, there was perhaps something we could do to try and find out why Jane died. I spoke to Alison Cox who was extremely helpful, not only because she understood what we were going through, but also because she confirmed what I had already discovered, that Jane might have died of a hereditary heart condition and that our family should be screened to see if we had also inherited the same condition. More importantly she also stressed that we should go for screening at a specialist centre. It took some persuasion but eventually I got referred to Prof. McKenna, as did Lizzie and my Mum, but other members of my family had more trouble getting referred outside their PCT, which has all added to the time it has taken to piece together enough information from everyone's test results to come close to a diagnosis. A year and a half after Jane's death there was finally enough information from our test results to indicate that Jane probably died of Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) and that another sister, my Mum and I have the condition that killed her. We are still waiting for genetic tests to confirm this diagnosis, but at least this finally answers our questions as to why Jane died. It also helps to reduce the fear that it might happen again to another member of the family, as we will be continually monitored and we know that treatment is available if required. Throughout this process of trying to find a cause for Jane's death and to get appropriate screening for the rest of the family we have had to be very pro-active. Neither the coroner nor any of our GPs recommended that we sought testing for a hereditary heart condition. In fact we had to fight to be referred to the correct specialist. We were also extremely let down by the post-mortem as if the correct tissue samples had been taken it may well have been possible to diagnose ARVC at that stage. This all adds to the stresses a family has to go through following a sudden death, making it even harder to have time to grieve. So I was very pleased to hear about the publication of a new chapter in the Coronary Heart Disease National Service Framework, specifically for Arrhythmias and Sudden Cardiac Death. The implementation of this framework should ensure that there is far more support available for families following sudden cardiac death and hopefully prevent such deaths occurring in the first place. The challenge now is to ensure that this framework is implemented throughout the NHS as soon as possible. I was therefore very excited when I was asked if I would like to be the CRY PCT Representative, the aim of which is to try and ensure that the PCTs are both aware of and active in trying to implement the recommendations of the new NSF chapter. I am a research scientist, specialising in tropical parasitic diseases, but I'm currently between contracts so I offered the spare time that I have at the moment to help CRY in any way that I could. It was felt that PCT's would be more likely to listen to an affected family member. It was a massive achievement to get an NSF chapter devoted to sudden cardiac death and gives us the tools to ensure that there is a support system for families who have gone through the trauma of loosing a relative so suddenly. The challenge now is to make sure that the recommendations of the framework are put in place as soon as possible. Clare Hinkley If you would like Clare to approach your Primary Care Trust (PCT) please call her on 07961 004 509 or write to Clare at the CRY office. For Clare’s full write up please visit the CRY Website Issue 39
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Issue 39 Newsletter by the Chief Executive
January; Our 10th Anniversary year began on January 7 with our Wales Postcard launch organised by Paulette Smith our new Divisional Representative in South Wales. Thanks to Paulette's endeavours this event effectively became the launch of CRY in Wales with requests for 15,000 postcards made and a considerable amount of press coverage achieved. Paulette chose Morriston Hospital Post-Grad Centre for the Wales launch, arranged for Novartis to Paulette Smith sponsor the lunch and INCO to sponsor the Postcard. The event was supported by families from Vale of Glamorgan, Cardiff, Flintshire, Pembrokeshire, Swansea and Conwy. Attending was a galaxy of VIP's including Welsh Assembly MP Edwina Hart; the Deputy Lord Mayor of Swansea Mair Gibbs; and geneticist Professor Mark Rees based at the new Institute of Life Science in Swansea. Mark contacted me after returning to the UK having spent 5 years in New Zealand Divisional researching inherited cardiac defects in Representative in families who had suffered the loss of South Wales young relatives from undiagnosed heart conditions. Speakers included our Patron Rob Jones who told of his feelings when a few months after he had joined CRY to help fundraise in memory of Christiaan Smith he suddenly heard that his 32 year old cousin had dropped dead from SADS; Gower MP Martin Caton who spoke about the importance of our Postcard Campaign in raising awareness and Consultant Cardiologist Dr Mark Anderson, who has been representing Wales on our NSF sub-group on sudden cardiac death and screening, concluded the talks by making an impassioned speech that changes that would hopefully be implemented in Martin Caton MP England through the work of our subgroup would only happen in Wales if pressure was brought to bear through the Welsh Assembly. Marks appeal was for support to ensure that all the work being done would not be in vain for Wales. CRY Patron Paulette did a superb job hand-delivering invitations to every department in the hospital, resulting in a packed reception with 93 people attending including most of the cardiology department! Those that came were able to talk to our families and learn of the unbelievable circumstances of the deaths of their children and young partners. Doreen Harley who had been unable to attend the Wales Postcard launch subsequently assembled her Rob Jones MBE local MP's in North Wales to promote the campaign with great success and further publicity. On January 12 CRY Representatives were invited to attend the Department of Health Research Forum on Genetics at which selected stakeholders participated in identifying the issues they felt would most help progress the genetics programme. The taking of family history, long advocated by Professor McKenna as the simplest and most cost effective tool in identifying those at risk, featured strongly in recommendations by delegates as 2
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a crucial and attainable first step to reduce deaths from these conditions. For the best possible reasons the first appointment of our CRY funded Research Fellow, Dr Jayesh Makan, had to terminate 6 months early as Jayesh managed to obtained his national training number in cardiology in the highly sought after Northwest Thames London Deanery (the most competitive rotation) in January rather than June! We are very proud that, as he has fully acknowledged, his work with CRY undoubtedly assisted his early selection. Our new Research Fellow, who will be again assisting Dr Sanjay Sharma with our screening programme, started in July. This month also witnessed the 2 final meetings of our Sudden Cardiac Death and Screening sub-group when expert submissions were collated, formulated and presented to Dr Roger Boyle by Chair Professor Bill McKenna. The final document was forwarded to various committees, policy branches, financial departments, Ministers and Cabinet Ministers before being signed off in preparation for its introduction. The Cardiovascular Research Funders Forum (CVRFF) held a meeting with international speakers on Premature Death and the Heart on January 31/February 1 at the Institute of Physics with 5 Sessions over 2 days. Session 4 on the Experience of Sudden Death featured 2 speakers from CRY. Supporter Julie John gave a deeply moving talk (that reduced many of the delegates to tears) about "The Family Experience" and how the loss of her 32 year old husband and the diagnosis of Long QT in their 2 children Laura and Danni had changed their lives, and I was invited to speak on "The Julie John Counsellors View" in dealing with affected families. Propitiously, at the end of the meeting it was announced that the European Cardiac Society had just recommended that all athletes should be screened. This led to a barrage of calls and publicity for us, and the issue was given extended coverage on BBC's on-line website highlighting CRY's advocacy of screening. February; Our South East Postcard was launched on February 18 in Smallfield Surrey and was supported by families from Kent, Surrey and Sussex. Special thanks to Rob Thorne for organising this event and whose company HCW Print were not only the specific sponsor for this postcard but have also sponsored the entire postcard campaign by printRob Thorne ing everything required at cost, in memory of the loss of his son Nicholas age 13; also to the Centenary Hall Smallfield for providing the venue and to the Thorne family and friends who provided us all with a wonTim Loughton MP derful hot lunch on a cold winters day. Tim Loughton MP Shadow Children's Minister and Shadow Health Minister spoke with feeling of the impact of sudden cardiac death on families and the event was covered by BBC TV SouthEast. On February 5 the CRY Surgery Supporters (SS) Club met at Issue 39
the Haywain in Epsom. Special thanks to Julie Mills for organising these meetings and to Dr Sanjay Sharma for again giving us some of his very precious off duty time to come and see our members. It was a particularly memorable Dr Sanjay Sharma with occasion as we were the Surgery Supporters Club introduced to Danni John's baby Dylan who was unquestionably the star of the weekend. March; Dari Taylor's Cardiac Risk in the Young (Screening) Private Member's Bill that was debated in the House of Commons on March 12 2004 resulted in the new Chapter 8 in the National Service Framework on Arrhythmias and Sudden Death which was announced by the Secretary of State for Health John Reid on March 4 2005 at the Coronary Heart Disease Collaborative Dari Taylor MP Conference in Birmingham. The Department of Health's Press Release featured CRY using the story of Laura John with her superb picture tossing the coin at Wimbledon for Roger Federer and Andy Roddick, and concluded with our quote highlighting the issue of young sudden cardiac death. John Reid MP CRY had 4 representatives on the sub-groups during the consultation period for the new chapter and also, most crucially, has been invited onto the New Implementation Board. This ensures that in the vital discussion period when funds are allocated and targets set - young sudden cardiac death will have a significant profile.
Professor Bill McKenna
Professor McKenna said "the consultation process brought together all the elements involved including coroners, geneticists, expert clinics and support groups. It has been very valuable and should result in a dramatic improvement in the prevention of tragedies, and the care and management of those affected. All involved learned. Preconceptions were broken down. Important contributions made. It has realistic and positive potential and, if recommendations are implemented, within 3 to 5 years we will see significant results."
On March 17 we launched the North Postcard at Hull. Special thanks for organising the day to County Representative for Humberside Pauline Jolly; Hull Collegiate School for sponsoring the postcard and Hull High School for providing the venue and the catering. Yorkshire TV's Calendar programme covered the event. Pauline Jolly
CRY Family’s seen here at the North Postcard Campaign Launch Issue 39
On March 22 I was invited to speak at a training day for civil servants on Private Members' Bills and Secondary Legislation, on how a small charity can successfully lobby for a Private Members Bill. I felt particularly
proud to be able to tell disbelieving delegates that we had achieved this without the backing of any union or sponsorship and guidance from any commercial group - an apparently unheard of achievement! On March 29 I was invited to the home of our County Representative in Sussex Jenny Cole who organised the press
Jenny Cole, Nigel Waterson MP, Charles Hendry MP, Greg Barker MP, NIgel Cole and Alison Cox, chief executive of CRY. to attend a meeting with 3 MP's: Nigel Waterson, Charles Hendry and Greg Barker, who had all declared support for our campaign.
Dr. Makan's paper in the March 2005 Issue of Heart "Identifying the Physiological Upper Limits of Left Ventricular Cavity Size in Highly Trained Adolescent Athletes" was carried by Reuters and received much attention in the national press. On March 31st The Rugby Football Union circulated a Press Release supporting the development of our screening programme in Rugby with the ultimate goal of extending screening into schools and clubs. April; CRY had good representation in the London Marathon with 65 Golden Bond and 23 own CRY Chairman place runners raising over £110,000 gross. Our London Marathon Reception was again held at the Brittannia Hotel. This Reception interfaces with CRY Chairman Professor Greg Whyte’s ongoing research into the assessment of cardiac fatigue after prolonged intensive aerobic exercise i.e. whether intensive exercise damages your heart. Special thanks to all those brave runners who gave blood before, immediately after (that really is tough!) and 24 hours later. Greg was again the first full costume runner (in his giant Heart) across the line, followed by 3 other Professor Greg Whyte members of his Heart Team who heard the commentator announce on TV that CRY had got its runners well organised this year as he individually announced each one as they crossed the finishing line in quick succession! Greg's picture has reached iconic status being used on the London Marathon website, running on giant screens as the London Marathon News feature at various airports, and also to decorate a number of magazine features including a Third Sector article about VAT and fundraising events, and EasyJet's inflight magazine. Philip Allen During the event there was excellent TV coverage for our 10 CRY heart runners which included a sensitively portrayed 5 minute interview by Colin Jackson featuring Philip Allen who explained why the loss of his sister Jane inspired him to run for CRY. Philip and his being interviewed by Colin Jackson Cardiac Risk in the Young
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sister Katie, who also ran for CRY, had earlier recorded a TV news feature on Anglia TV with Jane’s husband Edwin ten Dam and 2 year old Luka to raise awareness.
CRY’s Marathon Massage Team
Many thanks to our intrepid massage team of Stephanie Bray and Donna Willsmore who soothed the aching Stephanie Bray and Donna Willsmore muscles of so many exhausted runners at our reception at the Hilton Hotel after the race. Their excellent skills saved many from the alternative prospect of excruciating post-race muscle soreness and their cheerful dispositions convinced the pessimists that the pain really was worth the gain! Congratulations to our Chairman Greg Whyte on being awarded a Professorship - possibly the youngest Professor in the country? And CRY's consultant cardiologist Dr Sanjay Sharma who is now the Medical Director of the London Marathon and has also been elected to supervise and manProfessor Greg Whyte age the selection of CRY and Dr Sanjay Sharma as the UK referral point for rare cardiac conditions by The National Electronic Library for Health (NELH). May; The May Bank Holiday found Tony driving the CRY Van to Belfast for the launch of our Northern Ireland Postcard. This was our first visit to Northern Ireland and the launch was supported by in excess of 60 members of families from County Down, Lisburn, Antrim, Derry, Fermanagh and Tyrone. Dr Pascal McKeown Consultant/Senior Lecturer in Cardiology at The Queen's University of Belfast Institute of Clinical Science was the representative for Northern Ireland on our sub-group for the new NSF Chapter. Special thanks to Pascal for Dr Pascal McKeown spending so much of his Sunday morning helping our families have a better understanding of the medical conditions that can lead to sudden death in the young and answer their questions; the Stormont Hotel for providing the venue and to John Lundy our Divisional Representative in Northern Ireland for all his work in setting up the launch. Shortly after the launch The Reverend Ian Paisley Democratic Unionist MP for North Antrim; Gerry Adams Sinn Fein MP for Belfact West and Martin McGuiness Sinn Fein MP for Mid Ulster all declared support for John Lundy CRY's endeavours in response to receiving some of the 29,000 postcards requested by our families in Northern Ireland.
Divisional Representative in Northern Ireland 4
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The Postcard Campaign is undoubtedly gathering considerable momentum. We have printed over 90,000 for the 9 launches to date and hugely increased our profile with the public, MP's and the press. If you would like some postcards to send MP's from any of the launches, please contact the office. Your help in
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this raising awareness initiative is vital to its success. As the election caused our APPG to loose 20% of its members dropping from 83 to 60 people your MP might have lost his/her seat. If you would like more postcards to campaign with the newly elected member please let us know. Immediately following the launch of the Postcard we drove to Cavan to attend the All Ireland Line Dancing Championships who had chosen us as their charity of the year and raised the incredible total of £3,700 Aravon seen here in relaxed mode after in memory of Aine competing in the All Ireland McCann who died Line Dancing Championships suddenly age 8 from Myocarditis. Aine's Mum Aravon was the Novice Crystal World Champion in 2001 and her daughter Aisling won the Newcomer Primary World Championships in 2003. Although we were unable to get there in time to see the finals we received a wonderful welcome and enjoyed a spectacular evening of celebration witnessing the champions superb dancing skills in "relaxed mode." I was driven to Dublin the next morning by Michael and Marie Green and was delighted to attend a special luncheon meeting of their Trustee Board of CRY in Southern Ireland and learn of the progress being made with their goal of funding a screening programme at the Mater Hospital in Dublin. After travelling into our office from all over the UK for 12 meetings in 2 years our second Group of 9 Bereavement Supporters received their much valued accreditation for Counselling Theory. Special thanks to Julia Cayne for the training of our CRY Bereavement Support Team of 20 individuals over the last 4 years and to the Department of Health for funding the development of our Bereavement Support programme. As far as we are aware we are the only organisation that funds the training of bereaved Julia Cayne supporters with conventional counselling skills which includes the option of further Diploma training if they elect to have it. This gives our Bereavement Supporters the confidence that they have acquired recognised certification to help others, to the considerable benefit of our bereaved families. We have appointed Dr Clare Hinkley (sister of Philip Allen) as our CRY Volunteer Co-Ordinator for Primary Care Trusts. Clare's sister Jane died suddenly age 35. She had been suffering from symptoms that had not been diagnosed. It was not identified at Post Mortem. Her family had to fight for further information, and after being tested 3 members found they also have the condition. Jane left a devastated husband, 2 bewildered children, grieving parents and 4 distraught siblings. Clare will be meeting with Chief Executives of Primary Care Trusts to report back to our MP's on how the new chapter will be implemented in their hospital. She will be a powerful advocate for the suffering experienced after a loss and we are lucky indeed to have such an articulate apostle dedicating her free time to address what could, and we believe should, be done through the Primary Care Trusts and Chapter 8 on Arrhythmias and Sudden Death to reduce the death toll of young sudden cardiac death. Issue 39
Report from Steve Cox
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As you can see this is our biggest update ever thanks to your incredible support. Tony has worked closely with Maria to follow up everything that has been happening since issue 38 and I hope you agree they have done a fantastic job.
New CRY Christmas Cards After the success of last year’s cards we are offering the same cards again with two new additions. John Bennett has painted Lichfield Cathedral in memory of his daughter Laura. Sue McBirney, an artist and friend of Sarah Lewis kindly offered her support to CRY by painting a local scene of Tenby harbour. Sarah is the sister of Huw Lewis who died in 2002. To view our cards please go to www.c-r-y.org.uk/christmas_cards_charity.htm to see a full colour copy of all the cards. You will also see the full details, costs and sizes of the cards. Order forms can also be downloaded and/or printed out from here.
2005 London Marathon A big thank you to everyone who sent in photos of our 2005 London Marathon team and a special thank you to ‘Vixta’ for spending the day on top of a bus stop (with a policeman’s permission of course!) snapping away as all our runners passed her by at the 9 mile mark. For those of you who thought you were hearing voices it was probably Vicky cheering you on. Recruiting for the 2006 London Marathon is already well underway. If you or a friend would like to run for CRY please contact me as soon as possible or go to www.crunch.org.uk/cry. If you do register directly via the website please be sure to email me cry@c-r-y.org.uk to keep us informed as we need to know which runners have been recruited by CRUNCH and which have been recruited by CRY.
Goodbye for a happy retirement and a new staff in the CRY office Elaine has now started as CRY’s Volunteer Co-ordinator. She will be helping to put together teams of people who live locally to the CRY office to help out as projects arise. Jobs will vary in urgency, from helping with mailshots to washing the screening van on nice summer days! If you live locally to the CRY office and are able to help out, and are happy to go on Elaine’s list of volunteers please contact me.
By the time you receive this, Jenny will have left CRY to enjoy the peace of retirement. We will be sad to see her go as she has done such an incredible job for us over the past 3 years. We are quietly hoping she may get bored of retirement and join our ‘in office’ volunteer list!
CRY Website The CRY website continues to be central to CRY's activities, and is now getting an average of 1200 hits a day. Kerry Gray
Surgery Supporters Club The Surgery Support Group page has been updated with photos from some of the latest events, as well as contributions of personal experiences of club members. http://www.c-r-y.org.uk/ssgroup.htm
Event write-ups Lots of new event write-ups have been published on the site including parachute jumps, charity performances, and running for CRY. If you would like to send in a write up of your event please forward it me at kerry@c-r-y.org.uk They can be read at http://www.c-r-y.org.uk/past_events.htm
My stories A number of familes have sent in their personal accounts of their tragic losses which have been published in the the 'My Story' section of the website http://www.c-r-y.org.uk/my_story.htm
10th Anniversary A new 10th Anniversary page has been created which looks back over CRY's development from its origins to the present day. http://www.c-r-y.org.uk/10th_anniversary_page.htm
Media Section The media section keeps on expanding, as CRY is increasingly featured in regional and national publications - including recent articles in The Guardian, The Daily Telegraph, the News of the World and The Daily Express. All the articles can be seen at http://www.c-r-y.org.uk/what_is_the_media_ saying.htm
CRY in Parliament New additions to the Parliament section include a write-up of CRY's 2005 Parliamentary Reception*. Coverage of a recent debate on the new NSF chapter; and more praise for CRY from Dari Taylor MP in her Spring Parliamentary Report to her constituents. *(This includes both a transcirpt and downloadable audio files of each of the speeches). http://www.c-r-y.org.uk/parliament.htm
2005 London Marathon CRY's London Marathon page has also been developed. http://www.c-r-y.org.uk/London_Marathon.htm You can now find over 100 photos of CRY runners in the 2005 London Marathon, plus a new section devoted to personal accounts from CRY marathon runners and newspaper coverage of CRY marathon runners. This includes our first video (download) of Phil Allen’s interview with Colin Jackson, beware if you do not have broadband! http://www.c-r-y.org.uk/London_Marathon_accounts.htm
If you would like an A4 or A3 copy of any of the pages in this update (printed in colour & laminated) please contact the office Issue 39
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Report from Mat Wilson CRY Screening Manager The CRY Centre for Sports Cardiology
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Since my last report, it has been a rather exciting time in my life having just got married. On a professional basis, the CRY Centre of Sports Cardiology and the CRY screening programme have really taken off.
British Cardiac Society Conference From the 24th-27th May, Anthony and I attended the British Cardiac Society Conference. Unlike last year where we had a spot on the Delmar Reynolds stand, this year we had our own stand right next to the foyer. The event was highly beneficial for CRY because it is a conference that allows the whole medical community to come together in one venue (i.e. Doctors, nurses, technicians, etc). This allows CRY to disseminate all of our material in a structured format to specific medical parties. Most of the doctors were more interested in the statistical data and research that has been documented by or within CRY's programme, whereas, nurses and technicians were more interested in the bereavement, counselling and social support that CRY offers. In summary, this was an excellent conference that has established new links and networks between other national medical staff and ourselves. Immediately after the BCS conference, I attended the American College of Sports Medicine Conference (ACSM). This was a fantastic conference, in which there was overwhelming support for CRY's screening programme. This will clearly be an excellent forum for CRY to present findings from our screening programme in the future.
CRY’s New Research Fellow We have a new research fellow in Dr Sandeep Basavarajaiah from Kings College London. It is with pleasure to have Dr Basavarajaiah working for CRY, and I look forward to working closely with him over the next 2 years. Dr Basavarajaiah's first screening will be the England Rugby Junior National Academy in Bath.
Ethical Approvals for ECG testing in Schools The ethical approval has been taken forward within Lewisham and so far, two schools have allowed the CRY screening programme within their respective schools. We would like to thank Bonus Pastor School and Sydenham School who have agreed to allow CRY to approach the children from ethnically diverse backgrounds for their participation in a mass screening programme. We were hoping to start last month, but with GCSE exams, that was unrealistic. However, we are now looking to get started in the Autumn. University Hospital Lewisham technicians have already started screening controls for the statistical analysis. I am also about to meet up with Caroline Gard, to get the Essex schools ECG screening project off the ground in the near future. Once these two projects are underway we will be in an excellent position to expand these community screening projects to other state schools throughout the country.
Screening in Sport CRY presented at the National Academy Managers meeting for the Rugby Football Union (RFU) at the end of May. England Rugby and Premiership Rugby are two separate entities. England Rugby (who we are currently screening) are encouraging the Premiership to screen their players. So far Leeds Tykes, Gloucester RFU and Bath RFU have agreed to have their academies screened. Dates for Gloucester RFU and Bath RFU are yet to be decided, but Leeds Tykes are due to have screening on the 18th August.
ECG Screening in Schools CRY presented to the trustees of the Medical Officers of Schools Association (MOSA) in the early part of June. This organisation has been in existence since 1884 and represents all the doctors for private schools within in the UK. They have decided to provisionally back the screening programme within schools, thanks to the endeavours of Dr Jonathon Holliday (Eton School) and CRY is to present at the annual MOSA meeting (423 doctors) in Durham in the early part of next year.
The CRY Centre for Sports Cardiology in the Media The CRY Centre of Sports Cardiology has undertaken some filming for SKY television. In association with Dr Adam Carey (England Rugby / Celebrity Fit Club fame) the programme examined the cardiovascular health of the average "Joe Bloggs" off the street to demonstrate the state of the Nations health. Three programmes have been filmed, which should be going out on SKY later this year.
Community Screening Clinics Both the Colchester ECG clinic and CRY Centre for Sports Cardiology Clinic, running on alternative months, are providing excellent screening services in the Community. Many thanks to the superb initiative of Caroline Gard in the running of the Colchester Clinic, showing just what can be done and how lives can be saved through providing these unique subsidised services. The Colchester Clinic is now becoming so well established that GP’s are recommending it to asymptomatic patients. With kindest regards, Mat 6
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My London Marathon In memory of Alessandro Testardi by Rosemary Castle
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I decided to run for CRY in the 2004 London Marathon (and again in 2005), having experienced the sadness and loss of our dear friends' son, Alessandro. The training was hard at times however the thought that I could help to raise money for research into Sudden Cardiac Death Syndrome made it really worth while. The actual race was a very emotional experience and I enjoyed every mile of it! With the generous help of Alessandro's family and friends from Italy and the fundraising here in England I was able to raise over £3000 in total. There follows a letter from the parents of Alessandro Testardi, who died in 2003, which encouraged me to run for CRY in the 2004 London Marathon. Alessandro Testardi was born in Rome on 4th February 1987. Throughout his early childhood he enjoyed swimming, and at the age of 6½ he joined the “Monterotondo” football club near Rome. During this time he managed to combine successfully his studies and love for football, and apart from the usual growth sicknesses typical of a boy of this age (e.g. chickenpox.) his health was good. At the age of 14, during a routine health check he was diagnosed with a light cardiac arrhythmia. Since then his health was continuously monitored by a team of doctors at the “Paediatric Hospital, Medicina Sportiva Bambino Gesu" in Rome. Following the ECG and various tests, Alessandro was diagnosed with an “aritmia ipercinetica” which would disappear under stress when his heart beat reached 120. Alessandro’s heart, under physical stress, was performing in a perfect manner, with maximum heart rate of 161, and 45 at rest. He was a true athlete, who played the right back position in his football team and was also much admired for his ability to run. His medical condition was not causing problems, and soon many Italian football clubs of the 1st and 2nd Division including Sampdoria, Lazio, Livorno and Juventus - demonstrated an interest in his abilities. After 6 tests with Juventus, he was finally signed, and in June 2003 he would have moved to Turin to start his football career. Sadly his dream was never to become true. On the 19th of April 2003, Holy Saturday, while playing football in a federal tournament, he collapsed on the ground to the despair of his father who was then watching the match. A doctor who was also present tried desperately to resuscitate him. Alessandro was a talented athlete, a well liked and much loved young boy, and his funeral was attended by hundreds of people. The event was also reported in local and national papers. Alessandro’s heart was examined, after his death, by Prof. Gallo AnatomoPatologo of the University of Rome and subsequently by a team of researchers of the University of Padova, who are studying the reasons for the sudden death in young people. It emerged, after a thorough investigation, that Alessandro had contracted a virus 2 weeks before he died and the final diagnosis was Miocardite Fulminate. Con stima ed affetto Pasquale Maria Pia e Francesca Testardi
Alessandro’s parents wish to thank the support that CRY gives to families who like them have experienced a loss, and the effort that CRY is making in promoting research to prevent similar deaths in young people. Issue 39
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Julie’s Interview with Dr Jonathan Holliday Medical Officer of Eton School 1. How did you find out about CRY? I belong to an association of school doctors called the Medical Officers of Schools Association (MOSA) that gathers together all sorts of doctors that look after young people in schools. It is true to say that these tend to be private schools but this is not entirely so, and there are plenty of state boarding schools represented. It is a lively group that has clinical conferences at least twice a year and has a biennial prize for a paper presented on a medical subject related to school medicine. One year this presentation was about the experience of a school doctor inviting CRY to come and screen the pupils of his school. I had already had the awful experience of having a boy die of HCM while registered with me and I was really keen to avoid it happening again. His experience sounded great so I contacted CRY and they have been visiting our school each year ever since. 2. Please can you tell me about yourself and your work? I am a regular GP with an unusual practice! I live in Windsor and I work in Eton. We have 5700 patients registered with us of whom 1300 are teenage boys aged between 13 and 18 (I won't tell you which school that is!). Another 500 or so are masters and their families and other people working for the school employed in other support roles. I am the doctor for the Royal Household in Windsor and we have 300 residents registered with us who live in the Castle or in the park around it. These patients come from all walks of life! Then there are the patients of Eton and Eton Wick who fall in to the more regular run of things but who need just as much care and attention. I am married with two sons. One is already at Eton and the other will be starting there this September. Even though we live so close, all pupils at Eton have to board. 3. What made you start the ECG testing programme at Eton School? The experience I had with a young man aged 14 dying on our playing fields made me determined to do what I could to reduce the chance of it happening to more youngsters. I spread the word of my experience but when I heard of what CRY were doing I knew that this would be a great opportunity for more systematically reducing the risk. I have been proved right because already we have picked up one WPW who has recently undergone successful ablative therapy. 4. How long has this programme been carried out? We have now completed 3 cycles and it has become a part of our annual calendar. 5. Can you explain about the opportunity you gave CRY's screening manager, Mat Wilson? I really want to spread the word and get more schools involved and I have been thinking how I might do this. CRY is always so helpful and so supportive with any such initiative that I knew that I could count on them. I had talked with Mat about MOSA and he suggested coming along to do a presentation to the council of MOSA, of which I am a member. Council is made up of 13 or 14 active, enthusiastic school doctors so I knew that I could get exposure for CRY to at least that number. Whether that will turn into that many screening sessions we shall have to see but I certainly pushed them all hard! The meeting went well and I think that the other school doctors were impressed by what they saw. When I heard of what CRY were doing I knew 6. Why are you a great supporter of CRY's screening programme? that this would be a great opportunity for more Simply because I think it really can make a difference and really can save lives. I systematically reducing the risk... I think CRY’s have had another young man die this year. He had come over from Australia as a Screening Programme really can make a gap student for a year. He registered with my practice and a few days later died difference and really can save lives... I would like playing rugby. I know that he would have been picked up using this test and to see screening offered in every school in the would still be alive today. The more people we can get screened the better! My country!... I would like it to be as ordinary as havolder son has already been screened and soon my younger one will be as well. ing your tetanus booster when you are aged 14. 7. Could you tell me please about the article you have recently written for GP magazine? This is another way I hoped to raise awareness of Sudden Death Syndrome and the existence of CRY. I wrote an article for them as a cold shot a couple of years ago but it was not taken up. More recently I have been reviewing the journals for them and writing a report every couple of months so the editors knew me and accepted a fresh article. It is planned as a follow up to Prof McKenna's article in the same magazine that describes the conditions themselves. The magazine has a circulation of 30,000 GP's and is read by many more (staff and family!). It is a good way of spreading the message further. 8. What would you like to see with our screening programme in the future? I would like to see it offered in every school in the country! Our experience is that only about a third of those offered it take it up, but that could be a lot of cases found and a lot of lives saved. I would like it to be as ordinary as having your tetanus booster when you are aged 14.
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Can you find these words? LEARN TEACH CLINIC NURSE DOCTOR HEALTH SCHOOL TUTOR
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U C C J E S R U N N
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D H D O C T O R S I
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This is for Chelsea. I hope you enjoy the wordsearch! It was lovely meeting you. Love Julie xxx (Chelsea is a little girl that I met in Colchester at the CRY Awareness Stall who had lost her brother to a cardiac condition last November)
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The McKane Family "Please find enclosed a cheque for £1083 for CRY. We raised the money over two events in the same week. On Sunday 17th October we held a Martial Arts The Martial Arts Students Seminar with students from Ju-jitsu, Judo, Karate and Kempo. Everyone had a great day. Then on Friday 22nd we had an evening of entertainment with a young solo singer called Georgee and our children's Teachers Band providing the music. Many people kindly donated raffle prices. The children are trying to The Teachers Band organise another fund raising event at Christmas, so hopefully we will be able to donate some more money then. Many people were deeply upset by the death of a young rugby player on a visit to our club. Only a few people had any idea that young children could die this way. We have supported CRY for a number of years and have already had two of our four children checked. Our eldest daughter is now under a cardiologist, even though her condition was not picked up by the E.C.G., the fact that we knew the risk because of CRY, we went to the doctors who picked up a heart murmur and have since found a problem with one of her valves. Thanks for all the good work you do. We were very happy to do our little bit towards this worthy cause." From Kevin, Karen, Jodie, Steven, Adam and Kira McKane.
Georgee the Singer
Joseph Rowntree School Pupils from Joseph Rowntree School, York, took part in the YTC Charity Walk. With the help of Lobo the dog they raised £145
In memory of Jenny Pearce 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. WOW! Look at all the yummy cakes. I have chosen CRY because I know a number of people who have died due to undetected heart problems. 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. 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. Roy Ball seen here giving a talk about CRY 10 |
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In memory of Anthony Lancaster Pupils in Years 12 and 13 at Hull Grammar School have donated £533.67 to support CRY in memory of their friend Anthony Lancaster who died on 13th July 2002, just a few days after his 17th Birthday. Fundraising events included a Leg Wax by Nick Edwards, Jamie Kemp and Stephen Reynolds and a classroom slave auction allowed younger
Anthony Lancaster
members of the school to buy a classroom slave for the day. Willing slaves included Chris Armstrong, Tom Baxter, Jonny Birch, James Burnham, Danny Levy, Tim Miller, Elspeth Nicholson and Helen Stillings. Our two Australian Gap Students, Kate Wicking and Leigh Jones were also sold. The Primary Department donated
‘Ground School’ Learning how to Fly
money raised from their Easter Concert to swell the funds. In addition two brave souls, David Bratton and Elspeth Nicholson volunteered to tandem skydive with the Red Devils. Why would anybody want to jump With the cameraman exiting a few seconds before flying on his back. We can see Elspeth waiting in the door for the Jump
out of a perfectly good aircraft? Well because the door was open....! The exact moment of deployment
Elspeth seen here smiling her way to earth at 120mph Issue 39
Well done team! David and Elspeth seen here with their Red Devil Tandem Jumpmasters Cardiac Risk in the Young
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In memory of Sam Hayes "I have made some more cards to sell in memory of my classmate Sam Hayes and enclose a cheque for £74.80." Lucie Hartland.
Mouse House Nursery School The parents and children of the 'Mouse House Nursery School' in London SW11 have raised £312 by selling self-portraits on tea towels.
In memory of Lewis Marsh The pupils in Form 82 at Ranelagh School, Bracknell, Berkshire have raised £62.52 for CRY.
In memory of Alex Buckler "Our son Alex died suddenly while at school and amongst his friends, at the age of 17 in January 2004. The members of King's School Bruton ran a Sportathon in the summer, where everyone took part in one form or another doing continuous sport from 12 noon to 12 midnight. All sports were included from walking, squash, badminton, tennis, football, basket ball and many other activities. They raised a huge amount which was divided between Alex and another old boy who had died in an accident a few months previously. So I am enclosing their magnificent efforts of £1306.50 in memory of Alex. I am also enclosing another cheque for £693.50 also given in his memory by many friends, to make the sum up to £2,000. He was a good sportsman having represented Somerset at hockey and squash and when younger, chess. He was always willing to help anyone to perfect their skills in any sport with a ready smile. At home he also rode, getting the most out of some difficult ponies but always giving of his all. Jennifer and Charlotte his older sisters, and us miss his sense of humour and fun for living and it has left a huge void in our lives" Charles and Rosalind Buckler.
In memory of Adam Payne "Please find enclosed a cheque for £100. This was raised at the 2k Fun Run of the Sittingbourne Striders Running Club on Sunday 3rd October 2004. Approximately 100 children took part and we had a great race. We chose CRY as our charity because last year a young man called Adam Payne took part in the race and had a great time. Some six months later Adam died. He was seven years old. We asked his parents to choose a charity which was important to them. We wanted to take the opportunity of the race to remember Adam." Judy Thomas Fun Run Organiser.
In memory of Andrew Ball Catherine and her friend Rosie helped at The Weary Traveller Annual Bowling Day. They were in charge of the balloon race. They not only sold the balloons but also wrote out the labels and blew them up as well! They raised £142. For a full write up see Issue 38
The Stokes Church of England Primary School The Stokes Church of England Primary School (Leicester) held a sale of their harvest produce following their annual Harvest Festival and donated £150 to CRY. Gregg Shaw from Haxby, York, (aged 15) undertook a sponsored fun run and raised £35 for CRY. 12 |
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In memory of Philip Abraham Team Phoenix Cheerleaders have raised £170.00 at ‘A Family Fun Day’ in memory of Philip (See page 26 for details of Mary’s Summer Fete). Pictured right Team Phoenix Cheerleaders with Mary Abraham and the Mayoress at Botley Park Hotel, Golf and Country Club.
In memory of Therese Field "Enclosed are cheques totalling £3660. This money was raised for CRY by my dance school "Stargazers". We put on a song and dance show at the Theatre Royal, Margate on Saturday 26th June called "Saturday Night at the Movies". This was done in memory of my sister Therese. There were over 100 children involved in the show and they performed routines to songs from hit films." Tara Gore.
In memory of Mike Scott Lady Lumley's School held a non-uniform day in December in memory of Mike Scott. They raised £215 from their event.
Ascham House School Ascham House School in Gosforth, Newcastle Upon Tyne have raised £2,597.53, this money was raised from holding various Christmas functions within the school.
In memory of Scott McCollin A cheque for £340.35 has been received, via Michelle Appleby, from Aylesbury Grammar School, who chose CRY for their first fundraising effort.
In memory of James Dougherty Please find enclosed a cheque for £200 for CRY from the children of St. Helen's R.C. Infant and Nursery School. The children were given a tube of Smarties at the beginning of Lent and encouraged to help around the home for money to fill their Smartie tubes. They also held cake sales in school and raised £804, which is being divided between three Charities.Thank you for the opportunity to help this worthwhile cause." Barbara J Ellis (Mrs)
In memory of James Kelly "Please find enclosed a cheque for £600 for the James Kelly Memorial Fund. It was presented to me this morning from staff and pupils at St Patrick's Primary School. They did their annual walk around the school in memory of James. Unfortunately, it was raining on the day so they had to do the walk indoors but the children had a ball and ran havoc around the school." Elizabeth Kelly
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Pupils from St Patrick’s Primary School in Kilsyth
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CRY’s Postcard Campaign in 2005
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For more information on CRY’s Postcard Campaign visit the CRY website
6) WALES - 7th January 2005 Venue: Morriston Hospital, Swansea Sponsored by: INCO (International Nickel Co) HCW Print
7) SOUTH EAST - 18th February 2005 Venue: Centenary Hall, Smallfield, Surrey. Sponsored by: HCW Print - Ewell, Surrey
8) NORTH - 17th March 2005 Venue: Hull High School, Analby, East Yorks Sponsored by: Hull Collegiate School HCW Print
9) NORTHERN IRELAND - 1st May 2005 Venue: Stormont Hotel, Belfast. Sponsored by: The Aaron Lundy Memorial Fund The Cormac Trust, HCW Print
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Chris Christou took part in the Feel Fine British 10K race. He raised a sweat and £165 Ann Byrne raised £150 for CRY after taking part in the Flora Light Challenge for Women. "I enclose cheques totalling £135 for sponsorship money raised through taking part in the Nottingham Robin Hood Half Marathon. I would like to donate this to CRY." Lisa Barton. Nicola Wilcox from Stoke Bruerne took part in the Flora Light Women's Challenge. The support from her sponsors raised £665 for CRY. "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. Helen raised £120 + her website donations.
In memory of Paul Phyl Marrs and friends took part in the Flora Run and donated £375 of the monies raised to CRY in memory of Paul.
In memory of Nicholas Morris Phil Mustow completed the Wycombe Half Marathon and raised £250. This amount was generously matched by the John Lewis Parntership. "I can only say that I wish we had discovered CRY a great deal earlier as we hadn't realised until 15 months ago that you existed until my sister stumbled across your website while researching reasons how/why my son could have died, the verdict nevertheless was recorded as 'natural causes' by the Coroner's inquest after already having been through the torture of two post mortems and still not being able to confirm the cause of death." Elizabeth Morris.
In memory of Philip Abraham Donations have been received from Sarah Troon, Debbie Crowley and Mary Abraham who completed the Flora Light Challenge. They totalled £248. Angela Bird also ran and raised £117
In memory of Joe Sales Jane Fergie from Salford Quays, Manchester has raised £288 by completing the 10k Great Manchester Run in memory of Joe.
CRY’s Great North Runners Pete Reeve from Wirral raised £285
Mark Lowery from Leeds raised £101
Jonathan Hornsby raised £236.50
Ben Chaplin from Southfields raised £219
Fiona Brown from Wetherby raised £184
Lynsey Blade from Gateshead raised £112
James Williams raised £355
Mark Robson from Chiswick raised £800
Michaela Gillett raised £300
Michael Wood raised £248.49
In memory of James Cameron Lodge Sisters Alison Honour and Carolyn Brew ran in the Great North Run to raise money for CRY. “We ran in memory of James Cameron Lodge, son of a friend and colleague of Alison. James died last May, aged just 4yrs. James was a bright lively normal child who was very rarely ill. He loved to run, swim and climb and lived life to the full. One morning James woke up in distress; he couldn’t get his breath as his heart had stopped. James died in his father’s arms while waiting for an ambulance. All attempts to resuscitate him failed A detailed post-mortem discovered James had Cardiac Rhabdomyoma - tiny tumours that can affect the electrical impulses of the heart. In effect this causes a ‘short circuit’ and the heart stops beating. There are no clinical symptoms and the condition can only be detected by an MRI scan or post-mortem” Alison Honour and Carolyn Brew They have raised sponsorship money totalling £3,392 Issue 39
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In memory of Ben Thorn "I enclose a cheque for ÂŁ300, which is the share of the proceeds from a Charity Art Exhibition I held as a tribute to my son and his two sons, who all died within 18 months of each other. My youngest grandson, Ben, died suddenly in his sleep, aged 24. As I am aged 82, I could not take part in marathons or bike marathons, as other members of my family have done to support CRY - as an artist this was my contribution to such a good cause." Mrs Joyce Thorn. " The SRC Ben Thorn Cycleothon 6 took place in September 2004, and was a great success. Over 100 riders took part, and later in the day there was a barbecue for family and friends, which carried on till the early evening with live music and plenty of food and drink, very generously supplied by Dave and Alison Parker at their home in High Salvington. A raffle and an auction of a signed football and two framed prints of racing car drivers brought in even more funds. SRC is Dave`s recycling company and every two years Dave and Alison organise a charity bike ride, as they are friends of ours and knew Ben. We would like to send a big thank you to Dave and Alison for all their help in raising so much money in memory of our son Ben." Veronica Thorn The route was from Guildford to Bramley via Downs Link bridleway and up over the back of Steyning to Parkers at High Salvington. Approximately 40 gentle miles - almost traffic free. Transport was arranged bikes and cyclists leaving High Salvington at 7.30 hrs sharp! Extra posterior padding was highly recommended to protect the lower parts and together with some form of lubricant bananas - old engine oil etc! So far the Cycleothon has raised over ÂŁ9,000.
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In memory of Richard Whitehead "Our beloved son Richard died suddenly on 9th August 2004 from a condition called Myocarditis. He was just 26 years of age, a vibrant, energetic young man with a fine future ahead of him. He was an extremely fit, sports enthusiast, so full of life. He left a partner and a 9 week old son Jack. He died with Jack in his arms. Before this tragedy we had never heard of Myocarditis or the other related sudden death syndrome causes. We have in recent weeks read a great deal about similar tragedies and have been assisted in coping with our grief by a CRY counsellor. We would like you to accept the enclosed cheque for £1,000 to assist you in your cause." John, Pam and Joanne Whitehead.
In memory of Dominic O’Loughlin Mrs Sheila Sinclair won a competition and part of the prize money was a donation to a charity of her choice. She nominated CRY to be the recipient of the money. £100 was donated in memory of Dominic.
In memory of Mandi Blake Margo Wright has raised £200 for the Mandi Blake Memorial Fund from the sale of merchandise. Margo has sent in cheques totalling £258 which were raised during the Redcar Dip on Boxing day and the sale of soft toys. Middlesbrough Teesside Lions Club have forwarded £85.34, as requested by Margo, being her share of the sponsorship money raised.
Margo’s Boxing Day Dip
The North Sea was cold, but they saw a lovely Rainbow.
In memory of Leon Ashley Manners "Please find enclosed a cheque for £117. It has been collected in the Beacon Public House." Julie Hatton.
In memory of Robert Kirby "Please find enclosed a cheque for £1,000 which Speechly Bircham would like to donate to CRY. The money was raised from the firm's Christmas charity raffle. CRY was chosen in memory of Robert Kirby, the son of one of the Partners here." All at Speechly Bircham.
In memory of Ian Merchant Barbara and Dennis have sent a cheque for £152, being the proceeds of a raffle they held in December. "We have emptied our collecting box once again and with the £130.43 from the box, Barbara and I have topped this sum up to £200." Barbara and Dennis Merchant.
In memory of Alison Linforth “Please find enclosed another donation for £191.24 raised by my friends and colleagues at the Royal Bank of Scotland Cheque Centre in Birmingham. Like last year we held a special Halloween dress down/up day at the Cheque Centre. As you know it is still very difficult for my family to come to terms with Alison's loss, but it gives us great comfort when others help by supporting your just and great cause by raising much needed funds" John Linforth.
In memory of Kevin Lloyd Marie and Ted Lloyd held a Linedance Party for Marie's 60th birthday and raised £650. "Marie's son Kevin died in 1983 from what was believed to be WPW although this could not at that time be confirmed. He was 11 at the time and was at Burlish Middle School, Stourport-on-Severn, Worc. He was sitting at his desk reading. Although a nurse herself at Kidderminster Hospital when Kevin died, 22 years ago she says she felt very alone. Her gift to CRY in memory of Kevin is to support the great work CRY is continuing to do." Diane Tolley Issue 39
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In memory of Jamie Simpson "Enclosed is a cheque for £400, which I would like to donate in memory of my brother Jamie Simpson. I work for NatWest bank and every Friday we have a casual dress day for which the employees have to pay £2 every month, the proceeds of which go to a nominated charity. 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 through what mine have been through" Rhia Simpson.
In memory of Jim Liddell Mrs Kirsty Liddell has sent us a donation of £1,450 in memory of her beloved husband Jim, who died suddenly, aged 37, on 12th September 2004. The Royal Bank of Scotland, where Jim worked, organised a book of condolence for the family.
In memory of John McCall "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 Ian Strange "Would you kindly accept the enclosed cheque in memory of my dear son Ian who will be 27 on 16th May 2004. Ian's birthday is always a very difficult time for me but, knowing that I am not alone and there are people who understand exactly how I feel is a great comfort." Pat Strange. “I enclose a photograph of myself (In the middle) with two friends taken at Walthamstow Dog Track. Ian’s dad David who is the Social Secretary for the Chingford branch of the Federation of Independent Driving Instructors (FIDI) arranged the evening. We thought it would be an ideal opportunity to raise some funds for CRY by having a small raffle”. Patricia Strange. They raised £130 "Would you kindly accept this cheque for £100 in memory of my dear son Ian. Ian's birthday is on 16th May and although he cannot be with me in body I know he is celebrating his 28th birthday in spirit. Thankyou for all the support you give to parents, relatives and especially siblings. I don't know what I would have done without your help and comfort when Ian died. Keep up the good work" Patricia Strange.
In memory of Philip Holland A donation of £500 has been received from Betty de Berry in memory of Phillip Holland.
In memory of James Wood
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“I am now pleased to be sending you the monies we have raised in James’ name for CRY. The Tennis Day held on 5th September raised £444.12 and the Sailing Day held on the 18th September raised £230. The cheques enclosed total £674.12”. Gill Wood. Gill and her team also raised lots of awareness.
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In memory of Jamie Bucknell "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). 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, with more to come.
In memory of Madeleine Mulcahey Hugh and Jane (Madeleine's parents) organised a 'Sponsored Run' and raised £200.00. A donation of £988.50 has been received from the Planning Team who took part in the City of London Race. Alexandra Elgood took part in the Flora Light Challenge and raised £1,104 with more to follow. Customers of the Tite Inn at Chadlington, headed by the Landlord Michael Willis, organised a 120 mile bike ride through Oxfordshire to Hurley, Hampshire and back again. The money raised was shared between Oxford Association for the Blind, Katharine House Hospice and CRY. £1678.75 was donated to CRY.
In memory of Colin Doyle "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 the result of contributions from the Willow Tree customers over the past 18 months." Richard Haynes
In memory of Brian Southern "I enclose a cheque for £139 - which is what I raised by doing the Great North Walk. As I work for Abbey National they will match what I have raised." Brenda Plowman. Miss Brenda Plowman has sent in a cheque for £139 which was given by the Abbey National as a matched donation for monies already raised when she took part in the Great North Walk in 2004.
In memory of Bas A donation of £500 has been received from Mr and Mrs Thompson, from Crowborough, East Sussex. in memory of their beloved grandson Bas.
In memory of Neil Wickers and David Staff Members of the Two Gates Bowling Club have held an extremely successful bowling match and a buffet lunch afterwards. The event was organised by Marie Yates and raised £214. Irene has sent cheques totalling £137.68. The money was raised from collection boxes at the Academy 404. Daniel Thwaites Brewery of Blackburn have donated £3000 to subsidise our next screening weekend to be held in September or October 2005. "We have supported hundreds of worthy causes down the years but this is a very special situation where the lives of young people in our region are at risk. We are obviously delighted to be able to support CRY in the excellent work they do" Mr. Baker, Chairman. Neil's cousin, Christian Davies of Christian Davies Antiques of Preston, Lancs, has donated £100 being the fee of a valuation that he carried out. A donation of £123.50 was sent in via Granville, from Cavalier Carpets, who donated the money to CRY instead of sending each other Christmas cards. A donation has been received from Janette and Craig Hernen of £190 in memory of Steven Burrows. The money was raised at Craig's 40th birthday celebrations (Steve's brother-in-law). 24
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In memory of David Elliot "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
In memory of Michael ‘Winkle’ Kent 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 attack whilst playing pool. "This year the competition was a little later than planned, 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)
In memory of Joe Spivey "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 Joe 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 from 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”. Kath and Andrew Spivey.
The Leeds Marathon Competitors
From left to right they are - Simon, Steve, Mark, Neil, Andy, Katie and Mark
In memory of Paul Rafferty "I would like to donate this cheque in memory of my son who died last year from a cardiac arrest while playing football, he was 21 years old. I had a coffee morning last week and a raffle to raise money for you, and if it helps to save another young person’s life then that's my wish. My son's name was Paul and I just want to save parents going through what we are going through". Moira Rafferty. Moira and her team raised £640
In memory of David Bick "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
In memory of Kevin Sands "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.
In memory of Mike Ruinet "Please find enclosed a cheque of £162.50 which was raised through an auction at my sister’s wedding. It is in memory of my partner Mike who died on 13/10/02 aged 24." "I hope with this money we can help people who have suffered a loss like mine, and for others prevent it from happening." Juliet Bell Issue 39
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Our Fundraisers CRY
CRY
In memory of Aaron Lundy Aaron died on 18th September 1999. Since his death Aaron’s dad John Lundy (CRY’s Divisional Representative for Northern Ireland) has held several Raising Awareness and fundraising events. In this time John and his team have raised £8945. On the 9th August The Aaron Lundy Memorial Golf Tournament, a junior golf tournament was held at Portstewart Golf Club, where Aaron was a member. This tournament brought together 40 junior golfers from 10 golf clubs in the North West. Belfast Marathon in memory of Aaron Lundy. The sun shone on the 2nd May 2005, when five amateur athletes took to the streets of Belfast for the city’s 24th Marathon. Daphne Morton, Claire Duffy, Cat Lundy, Susan Duffy and - the only male – Alex Morton were the five members of The Teardrops. Between them, the relay team ran the 26 miles of the course in the very respectable time of 4hours 27mins 18 seconds. The Teardrops set out to raise money for CRY and in particular The Aaron Lundy Memorial Fund. The team far exceeded their own expectations and raised a grand total of £1370. The photograph (right) shows a very tired but happy team. The Belfast Marathon Team for Aaron
In memory of Philip Abraham 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. Through Mary (Philip's mum) Sainsburys have awarded CRY £200.00 from their 'Penny Back Scheme' and Carole Saunders has donated £100. 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 “I am enclosing the proceeds of my first two events this year, as I have set myself a target of doing 10 fundraising events in this 10th anniversary year. We did our barn dance on 30th April raised £276, great fun with the 'Cornrigs' band and our musical concert with 'New Music Makers Choir' on 7th May raising £246. We had a delightful evening and a reasonable turnout. The choir were very supportive and enjoyable." Mary Abraham. Mary has sent in a donation of £148 which was raised from collection boxes and general Christmas donations for Philip's Memorial Fund. Mary has again been awarded the Local Heroes grant from Sainsburys, who have donated a further £200.
Mary and her team of Ladies Flora Light Challengers 26
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The New Music Makers Concert raised £246 Issue 39
The ‘H’ Howard Jennings CRY Memorial Trophy 2004
CRY
CRY
This year's trophy winner was David Anderson from Computacenter. Second was last year's winner Lee Scarborough, and third was David Chambers. The ladies medal was won by our youngest player, Roxanne Masters. The winner of the knitted golfer was Dave Ashley!! We raised in excess of £2,700, including £400 from Lloyds TSB. 64 players took part in the event. Thanks as always go to Carole and Ray Haylock and Angie Masters for their continued support. Donations of raffle prizes and trophies were made from numerous sources including Atlas Copco and Hemel Trophies and Jewellers. A big thank you to all who continue to support the event by playing in the tournament, serving coffee at the ninth hole, raising money through sponsorship, selling raffle tickets, etc. The 2005 tournament will be on Sunday 18th September at Little Hay Golf Complex. Anyone interested in playing should contact Keeley Ashley via the CRY office.
The Gordon Family...... All the way from Scotland.
That’s it. I’ve had enough.
The Murphy Team having been relieved of all loose change.
Well done Daddy. Issue 39
The Masters Team.
Yes we did need umbrellas.
Keeley, Terry & Phyllis... What a great Team.
The Ladies Medal Winner. Well done Roxanne.
David Anderson. The Trophy Winner.
Dad and the old faithfuls.
Kieren & Billy trying to match the smile on the CRY Heart.
Team Atlas Copco.
Lee Scarborough, runner up. Cardiac Risk in the Young
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Our Fundraisers CRY
CRY
In memory of Jenny Pearce "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. "Please find enclosed a cheque for the sum of £250. The money was raised through sponsorship, raised by my wife Kerry, to run the Lincoln 10k Road Race in April '04. She decided to run in memory of our niece Jenny Pearce who passed away suddenly last October. Since Jenny's death CRY has been a source of great support to her mum Sandra and the information on SADs has helped the whole family come to terms with our sad loss." R.W. Creppy.
In memory of Laura Bennett A donation of £100 has been received from Slater Fox (Insurance Brokers) Ltd. in memory of Laura.
In memory of Andy Shearer "Please find enclosed our donations gathered for CRY (£850). We tragically lost our beloved elder son Andy on 5th March 2002. He was only 21 years of age and was a young, fit and apparently healthy young man with a great approach to life. Andy was extremely happy and popular with many friends and had a steady relationship with his girlfriend Kirsty. He had no history of illness. His heart stopped while in bed asleep during the night and after two successive post mortems the cause of death could not be ascertained so you can imagine the anguish we felt and will still continue to feel forever. Andy's spirit however lives on through his younger brother Chris, Kirsty, his friends and family. He will never be forgotten." Drew, Sally, Chris and Kirsty.
In memory of Adam Donnelly "Our son Adam died on 30th July this year after suffering a heart attack. So far, no reason has been given for his collapse, so we are finding it very difficult to come to terms with. Information on your website has helped us a lot in trying to answer some questions. Instead of giving floral tributes at Adam's funeral, we requested that people donated to 2 charities that we nominated - one of which was CRY. Attached you will find cheques to the value of £500 - I hope this will help in some way with the excellent work you do." Mrs. Julie Donnelly. "Please find enclosed a cheque to the value of £140 which was raised by holding a raffle at Old Brockleians Rugby Club, Eltham in memory of our son Adam Donnelly who sadly passed away from a sudden heart attack in July 2004 at the age of 17" Jed & Julie Donnelly. "We had a presentation evening on 7th May when our Church Social Club gave a cheque to CRY for £2000. The money was raised by holding a race night at Our Lady of the Rosary Parish Social Club on Saturday 20th May 2004. Anna Takkula very kindly came along to represent CRY and gave a very moving speech about her own personal experience and how she got involved with CRY and gave an overview of CRY and their objectives - it really was an excellent speech." The cheque was presented from the Church Social Club Julie Donnelly. to CRY Supporter Anna Takkula on behalf of CRY 28
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Issue 39
Our Fundraisers
CRY
CRY
In memory of David John Byford-Fox Mrs Celia Byford-Fox has sent a donation for £150 in memory of her son David.
In memory of David Mrs Marion Lee took part in a sponsored slim in memory of her son David and raised £254.
In memory of Paul Short "Please find enclosed a cheque for £160. This money was donated by the members of C3 Imaging, in Formby, Merseyside, in memory of my son Paul who died 16th January 2004, aged 30. It was raised by putting their small change in a big whisky bottle. It is a magnificent amount as we are only a very small firm." Frank Short.
In memory of Scott McCollin A cheque has been received for £500 from the Royal Bank of Scotland, South of England Corporate Services Centre, via June Dollard, which is sponsorship for the postcard launch on 29th October 2004 in Oxford. Employees of the South of England Corporate Service Centre donated £236.12 in memory of Scott McCollin who tragically died in November 2002.
In memory of Andrew Ball Roy Ball and Pam Jay have raised £310 after Pam had a 'Dress to Impress' birthday party. A donation has been received for £250 via Mr P Astbury , The Sutton Arms, with help from the Midlands Davison Motorcycle Club in memory of Andrew. A donation of £100 has been received from Helen Strong of Wellconstruct for the Andrew Ball Memorial Fund.
In memory of Philip Barlow "I am writing to you as the daughter and executor of my late Mum's Will, Kathleen Barlow who died on September 7, 2004 with all her family around her. It was her express wish that she only have immediate family flowers at her funeral and any donations given by family or friends be shared between CRY and the Little Sisters of the Poor, Bristol. I am enclosing a cheque for £200, and this includes a very generous donation of £85 from her friends and neighbours of Rene England House." Christine Cockell.
In memory of Tabitha Dee Shapland A donation has been given by R J Bray & Son of £500 in memory of Tabitha Dee Shapland, aged 14 years. "Please find enclosed cheques to the value of £410. The money was given to us on the occasion of our recent Golden Wedding celebration in lieu of presents. We make this gift to CRY in memory of our Granddaughter, Tabitha Shapland, who died in her sleep on the 20th March 2004. This is also in recognition of the help that you are giving, to Jayne and Alex Shapland and our family, following the tragic loss. We wish you every success in your excellent efforts to help bereaved families." Mavis and Derek Handover.
In memory of Jeremy Cole Philippa (Jeremy’s sister) and Scott Henderson have raised £1687.95. Instead of wedding presents they asked family and friends for a donation to CRY in memory of Jeremy. They set up a fundraising page on justgiving.com which they found very effective. The Royal Bank of Scotland, where they both work, has donated £1000 through their Community Cashback Awards scheme. CRY’s apologies to Philippa and Scott for wrongly reporting that they had raised £100 in Issue 38. A donation has also been received for £250 from Mr T Richards for the Jeremy Cole Memorial Fund.
Philippa and Scott on their big day
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Skydiving for CRY
CRY
CRY
Katie Goddard of Blackfield, Southampton has raised £340 after undertaking a Tandem Skydive. David Woodfinden from Stockport carried out a tandem skydive and raised £350. Tess Rawlins, from London, completed a Tandem Skydive for CRY and raised £600. Steven Moore from Northwich, Cheshire performed a Tandem Skydive and raised £350. Kelly Gardiner, from Purfleet, Essex, took part in a Tandem Skydive and raised £365 for CRY.
Martin Dawson from Driffield, East Yorkshire carried out a Tandem Skydive and raised £510 for CRY.
Lorraine Lake from Aylesbury performed a Tandem Skydive and raised £350 for CRY. Laura Archer, from Kenilworth, performed a Tandem Skydive and raised £540. Naledi Nickerson has carried out a Tandem Skydive and raised £350 for CRY Mike Cummins of Ruislip has raised £921.40 from sponsorship of his Skydive.
Rachel Sinfield from Aberdeen has raised £478 by performing a Tandem Skydive. 30
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Chris Morgan, from Bubbenhall, Coventry, performed a Tandem Skydive and raised £350. Jodie Corbishley from Newport, Shropshire performed a Tandem Skydive and raised £350.
Farah Hussain from Trebanos, Pontadardawe performed a Tandem Skydive and raised £350.
Sonal Fatania from Rushley Mead, Leicester took part in a Tandem Skydive and raised £457 for CRY. Kelly-Ann Donald from Portlethen, Aberdeen has carried out a Tandem Skydive and raised £779. Wayne Munton from Holbeach, Spalding has executed a Static Square Parachute Jump and raised £1273. Anna Rosenberg from Crewkerne, Somerset has carried out a Tandem Skydive and raised £350.
Marine Rehman from Chesham has enjoyed the experience of a Tandem Skydive and donated £350 to CRY.
Matt Kennedy from Uxbridge, Middlesex, raised £350 by executing a Tandem Skydive.
In memory of Matthew Brown Sue Warner took part in a Tandem Skydive to raise funds for her late son Matt Brown. She raised a total of £1,100. Issue 39
The 3 Peaks Challenge In memory of Andy Gard
CRY
CRY
There were six of us attempting the 3 Peaks Challenge. Myself (Steve Sparkes), my colleague Simon Clapson, and four people I used to work with - Richard Allen, Geoff Pugh, Ryan Lingley and Nick Wright. There was also a vital seventh member of our team - our driver, Baz Bark. When we woke, we stepped out of the bunkhouse and could see the summit of Snowdon in the distance and in the cloud! Someone the night before had cunningly arranged for the landlord at the pub to cook us a fry up, so it was back to the pub again for breakfast.
The ascent of Snowdon
Before we knew it, the time was 10.30am, and we were heading up the Pyg Track on Snowdon. We made fantastic time to the summit - in only one and a half hours! We didn't have long at the top, and luckily there was no fantastic view to keep us there either - just grey murk and cloud. In seemingly no time at all, we were back in the van, and making our way up to the Lake District. Snowdon climb time - 2hrs 55mins. We arrived in the Lake District at a few minutes past 6pm, after a minor hold up on the M6. Soon we were out of the van, and making our way up a very hot and humid Scafell Pike. Due to odd weather conditions, mist was rising in clouds off the lake due to a warm evening, and there was a layer of cloud above us. I liken our progress to trying to walk up a down escalator in a sauna with a rucksack and lead boots on! The going was not very easy....... We made the summit by 8pm, and were back down again by 9.30pm. Now it was time for the very long drive to Ben Nevis. Scafell Pike climb time - 3hrs 55mins
The boys up Scaffell Pike
By this time, I was starting to feel a little tired, a lot hungry, and - due to Baz's insanely fast (but safe and legal!) driving along bumpy, twisting roads - very, very ill. Luckily I fell asleep quite quickly. I remember waking up at a petrol station somewhere in Scotland at about 1am. I opened the back doors of the van, and stepped out. Unfortunately, due to hours of over use followed by hours of stiffening up, my knees were not working and I ended up in a heap on the floor next to the diesel pump!
My next memory was at 3.05am, being shoved from the warm van into the dark, cold foothills of Ben Nevis. Head torches on, we started what seemed like a journey to Middle Earth. It wasn't too long until we could see, and we seemed to be making good progress. That was, until we started to encounter the white stuff - and I don't mean milk! The last hour of the climb was going through snow that in some places must have been twelve feet deep. We know this, because Nick decided to fall into a snow hole! A little shaken, but OK, we got him out and carried on. The summit was a very welcome sight, as I think I can speak for all of us when I say it was bloody cold. We were starting to get cold and wet - not a nice situation. At 6.05am I was the highest person in Great Britain - quite a feeling! The descent was starting to take its toll on Simon's knees, and the rest of the group went on ahead to get some very impressive 3 Peaks times. With a helping shoulder from myself, Simon managed to hobble the last hour of the mountain - sometimes backwards in parts where this made the descent easier on his knees. It wasn't too long until we were again in the foothills, and passing day walkers on their way up, which gave us a boost. We finally completed the 3 Peaks Challenge in 23hrs 23mins! I would like to give out an extra special 'Thank You' to Baz. At the time I wanted to kill him because of his insane driving, but without his efforts we never would have completed the challenge within 24hrs. We only had 37 minutes to spare, and Baz certainly made that up somewhere in the drive. Cheers, Steve Sparkes For the full write up please visit the CRY Website 32
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Coincidently by the time that they had completed their challenge... It was opening time... Mines a pint! Issue 39
Our Fundraisers
CRY
CRY
Friends of Dominic Lilley A gig was arranged by Wagdog Limited for Dom and raised £401.23. "Charity Football Match vs Aston Villa Old Stars - 8 August 2004. On behalf of the Friends of Dominic Lilley, I enclose a cheque for £1706 which represents half of the proceeds from the above event, the other half going to City Hospital, Birmingham" Andrew Russell.
In memory of Dawn and Nadia Donations were received totalling £275.40 from Mr and Mrs Tomlinson and Ros.
In memory of Stephen Michael Gregory "I feel I would like to do more and did write to my M.P. earlier this year but sometimes feel so sad and alone that I don't have the strength at times. Other times I feel more positive and in the summer I had a car boot for CRY so I would like you to accept this cheque for £250 in memory of my son Stephen who died 9th May 2002 age 27 years. Next year I will have another and hopefully raise more money" Myra Gregory.
In memory of Nathan Jennings Members and Friends of the Mid-Kent Golf Club held a charity day on 23rd October 2004. They raised a total of £1,600
In memory of James Wilson "Enclosed is a cheque for £300 collected by Lloyds Bank for a dress down day organised in memory of my son James. It was presented to Paula (James sister). Also a cheque for £30 donated to myself by a grateful customer whom I catered for with a buffet. £1462 was raised by 38 family and friends walking 8 miles in memory of James". Ann Wilson "Enclosed is a cheque for £565. This was raised with a charity night we held in memory of Jimmy. It was a great success with the band 'Male Order'. I am hoping to hold a charity walk again this year as we raised quite a bit last year for CRY." Ann Wilson. "Enclosed in a cheque for £436 raised for Jimmy's Memorial Fund through bag packing at Asda, Washington, with family and friends." Ann Wilson.
In memory of Richard Bethell I enclose a cheque for £450, this money was donated in place of flowers at our son’s funeral. Our son Richard died on the 28th October last year while playing. Richard has always been a very healthy and energetic boy, he would never sit down when he could be running about. It was not till after his post mortem that we discovered that he had had a heart abnormality since birth. His cause of death was put down as "Acute Cardiac Dysrythmia" and Endocardial Fibroelastosis. His death was so sudden and very unexpected that it has really hit us hard. We were given your booklet and it helped explain a lot although the question "Why?" can never be answered. On behalf of my wife and myself I would like to say thank you for the information and hope this small sum helps in some way." J.P. Bethell.
In memory of Chad Loveday Debbie Loveday has donated a further £337.50 towards Chad’s Fund. "Please find attached our cheques equalling the amount of £160, requested to be added to Chad's memorial fund." Debbie Loveday.
In memory of Phil Holland All Saint's Church, Warlingham has donated £200 in memory of Phil. All Saints make a charitable donation each Christmas. "The vicar was at university with me and chose CRY this time" Jim Holland.
Friends of Michael John Ingleston Mrs. Liz Ingleston has kindly donation £330. "This money was raised to celebrate my son's 21st birthday (Michael John Ingleston). Due to Michael's medical condition it is very appropriate for CRY to receive this money. The charity evening was organised by Mr. George Gillen and myself. It involved a group of twenty or so friends, supper music quiz at my home." Liz Ingleston. Mr.George Gillan's employer Diageo foundation have matched the donation with £330. 34
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Issue 39
Our Fundraisers
CRY
CRY
Cartridges4charity.co.uk The sale of used cartridges by Cartidges4charity.co.uk has raised £1111.76. Dermot Crean has made a Gift Aid donation to CRY of £200 for his update subscription. Mr. & Mrs. D Rees recently celebrated their Golden Wedding Anniversary, instead of presents they asked that donations be made. A total of £300 was raised, this was shared between CRY and Cancer Research..
Wrexham Round Table Wrexham Round Table have made a donation. The cheque was presented to CRY Patron Mark Cox . With special thanks to Peter Byrne and Mike Walker. The Rotary Cub raised £1000 The Medics Revue Company put on a fantastic show for CRY. With all their hard work they managed to raise £2000 plus £125 Matched Giving from John and Victoria Phillis. (Co Producer) Mr & Mrs D Allen have made a donation of £100 for their update subscription.
Marlborough Town Football Club "On Saturday 14th August members of Marlborough Town Football Club held a jumble sale to raise money for CRY and Macmillan Nurses. Please find enclosed a cheque for £130 representing the half share from the proceeds." Mrs. C. Grove. "I had a charity day at my house last week to raise money for both CRY and breast cancer. I am enclosing a cheque for £200 for you." Ms. Jo Cockerill.
Tockholes Village Gala 200 "Please accept the enclosed cheque of £100 as a donation to CRY from the proceeds of Tockholes Village Gala 200." Mrs. V H Houghton. Mrs. Betty Carter and Mrs. Cheryl Arnold of Wells in Somerset have raised £280 through a car boot sale held at Cheddar and through family donations. A charity disco was held at the Woodside Social Club in Glasgow. Fiona McGregor and her friend organised the event and raised £400. "This is the second event we have held now, for which the proceeds are split between CRY and Sargent Cancer Care for Children, and we hope to make it an annual event. The disco was a great success and we held a raffle and a "Spot the Ball" competition, which proved to be very popular. Around 120 or so people attended the night and a great time was had by all." Fiona McGregor.
Cameron Walker Court From our friends at Cameron Walker Court "One of our resident ladies, Mrs. Joan Newton celebrated her 80th birthday recently and requested that instead of presents her friends made donations to CRY." Derek Thorp Mrs. Newton raised £110. "Donations were given as 90th birthday gifts from Mrs. Jean Gibson and from the sale of books from our bookstall." Derek Thorp. £225 was raised
Bromley Ecumenical Singers
held a concert for CRY on 27th November at Bromley Parish Church. The programme consisted of Durufle’s Requiem, Vaughan Williams Violin Concerto and John Ireland’s Greater Love Hath No Man. The event was attended by CRY Manager Steve Cox and his partner Lada. The event was greatly enjoyed by all. The singers raised £1012.07
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Our Fundraisers
CRY
CRY
"Please find enclosed cheques totalling £120 that have been raised by my lovely grandmother. Her name is Mrs Lily Ford and she recently celebrated her 95th birthday. She decided that at her age she did not need any presents as she has everything she wants or needs, so she asked for donations to CRY instead. Could you send her a certificate or something please as it will make her day." Mrs L J Ford.
The Pilgrims Way Lodge "At the request of our Worshipful Master W. Bro. Edwin Herrnicht, I have again been asked to forward our cheque, this time for £300, which has been raised by the Lodge members during his year of office”. Anthony Odling. A further donation of £330.30 has been received from the Pilgrims Way Lodge. Richard Searles - Charity Steward. The donations from the Lodge will be used to fund screening equipment at the CRY Centre for Sports Cardiology.
British Home Stores Staff at British Home Stores have held numerous and varied fund raising events throughout the course of the year and have made a donation of £7599.73. One event pictured left shows some of the runners who took part in the Great South Run.
Soroptimist International of Epsom and District Soroptimist International of Epsom and District held a Floral Extravaganza on May 12th and one of their members donated some sponsored walk money; in all £1452 was raised. "It is great to know so many good hearted souls that make this kind of an event so worthwhile" Barbara Watts (President). The event was attended by MP Chris Grayling.
Marathon Rowers
Mark Avern and three friends from The Club At Meyrick Park, Bournemouth organised a 'Marathon Row' (Pictured here after the event). They all put their backs into it and donated £890. They also raised awareness with CRY Merchandise. 36
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Issue 39
Our Fundraisers
CRY
CRY
Walton-on-the-Naze Rowing Club Walton-on-the-Naze Rowing Club have donated a further £150 in support of CRY.
Wix & District Young Farmers Club "I am a member of Wix & District Young Farmers Club. This year, the Chairman, Will King, has chosen to donate £750 to CRY. Please find the cheque enclosed. We all hope this will help." Lisa King.
Royal Mail and GlaxoSmithKline - Slough "Please find enclosed a cheque for £750. This was presented to myself and some other employees from Royal Mail Slough and GlaxoSmithKline - Slough. My group organised and participated in setting up a drinks station for the Windsor Half Marathon. This year we gave out 12,000 cups of water . We would like to donate this money to CRY to help with CRY's campaign." Mr. Thomas Graham.
The Post Office Recreational Club in Chesterfield "The Post Office Recreational Club in Chesterfield held a charity fun day on Sunday 18th July 2004 and raised £570 for CRY." Kish Brown - for the Recreational Club.
Irish Rugby Football Union The Ulster Branch of the Irish Rugby Football Union have made a donation of £711.29.
Inner Wheel Club of Cardiff Celtic Members of the Inner Wheel Club of Cardiff Celtic selected CRY as one of their chosen charities for 2004 and have kindly donated £100. Mrs. Heather Hill - Treasurer.
Stithians Women's Institute A donation has been received from the Stithians Women's Institute, Cornwall for £339.80. This is the proceeds of their collections during 2004 for CRY.
Ewell United Reformed Church "I have pleasure in enclosing cheques to the value of £235.40 raised at our recent Communion services and special Gift Days at Christmas." Betty Malandrone - Ewell United Reformed Church.
West Energy Coast Limited "We did not send out traditional Christmas cards from the company this year, just an electronic seasonal greeting confirming that money saved on Christmas cards will be sent to a charity chosen by the staff. CRY was this year's chosen charity. Please find enclosed a cheque for £350." Sally Daly, Accounts Administrator, West Energy Coast Limited.
Barclays Bank Annual Cricket Match “The annual cricket match to raise funds for CRY was thwarted this year by ground improvements being carried out. In an attempt to salvage part of the fundraising event, Lindsay Clarke in Barclays Bank Resourcing and Learning from the HR Department 'saved the day' by organising a silent auction at their December conference. The amount raised was a fantastic £1616.00 and Barclays made a further donation of £750 through their matched funding scheme. We are hopeful to return to the cricket format this year Sunday 21st August" Neville Pritchard.
Kirkbymoorside Young Farmers' Club “I write as Chairman of Kirkbymoorside Young Farmers' Club. Each year we choose two charities to support. I am pleased to enclose a cheque for £291.55 from the club. We raised this money with a duck race and a carol singing evening. I trust you will be able to put this to good use" Stephen Eddon. Mat Ireland from Woodbridge, Suffolk, took part in a sponsored bike ride and raised £172 for CRY. Mrs. Betty Carter and Mrs. Cheryl Arnold of Wells in Somerset have raised £280 through a car boot sale held at Cheddar and through family donations. "Please find enclosed £125 which I raised at my Horse Show. We shared the profit with our local scout group." Lisa King Issue 39
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Our Fundraisers
CRY
CRY
Michael Jones from Balham has again raised money for CRY; this year he has donated £600 by taking part in various charity walks. He is planning another walk for later this year and hopes to be able to raise more money. "I was admitted to St John's Hospital in Livingston on the 12th December after collapsing during a football game. The cause of this collapse turned out to be Wolfe Parkinson White, which I had been living with all my life. I never knew I had WPW, so the cardiac arrest and coma that followed came as much of a surprise to me as my family. The hospital staff were especially surprised that I survived. Since my full recovery I have had a fundraiser as a way of saying thanks to the hospital staff and ambulance service who came to my rescue. As a result I would like to make a donation of £350 to your foundation as well. I hope this can in some way help you to continue helping others." Yours with gratitude Scott Fleming
Village Bridge Drive "We had a successful Village Bridge Drive on Sunday and raised from that event £356.50. There is also a cheque enclosed for £100 from the Soroptimist International of Grange-over-Sands, making a total of £456. We enjoyed doing this event for you and every success to you for the future." Mildred Vause.
Three Valleys Water Company The Three Valleys Water Company at Hatfield, held a ‘Dress Down Day' for CRY. “Each month we have a Dress Down Day when staff either come to work casually dressed or dress-up to a particular theme, at the same time they donate money to charities nominated by staff. The money raised is then matched by the company”. Sally Howe. Sally Howe from Three Valleys Water hands over a cheque for £470 received on behalf of CRY by John Dickinson, English Institute of Sport, Physiologist. Based at the OMI
Carr Sheppards Crosthwaite "I have pleasure in enclosing a cheque for £2,000 representing a donation made by Carr Sheppards Crosthwaite under the corporate Gift Aid scheme. Your charity was nominated by one of our clients, Ann Meek, following a draw which took place at our offices recently. We felt it was a very good way of making a charitable contribution at this time of year." Mark Radmayne.
Sunderland Health & Racquet Club Mr. Scott Wright of Sunderland Health & Racquet Club held a Swimathon and raised £326 for CRY.
Eastbourne Ambulance 11 "I have enclosed a cheque for you that we raised at a football match on 3rd April 2005 at the Oval in Eastbourne. It was a great day, the sun shone, and the match went well. The first half saw the Eastbourne United veterans get some good chances on goal, but with a great keeper like Robbie we kept them out. The second half found the Ambulance 11 stepping up a gear and scoring two goals both from Ollie. What a great day and for a great cause. I think this may become an annual event." Mr. W.J. Pike (Bill) EASTBOURNE AMBULANCE 11. The total amount raised was £330.14
Mitsubishi Electric, Air Conditioning Systems Europe Ltd Mitsubishi Electric, Air Conditioning Systems Europe Ltd. have made a donation of £100.
CRY Commando Challenge "Please find enclosed a cheque for £281.60. This is money raised by Derek Cole and Angela Frost who were part of my Commando Challenge Team. There are some outstanding amounts which I will forward to you as soon as I receive them. They all want to run again next time, so hopefully we'll do even better then." Julie John. Julie has added an extra £82. A Royal Marine offers a helping hand to Julie and her team. 38
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Cardiac Risk in the Young
Issue 39
Our Fundraisers
CRY
CRY
In memory of Patrick ‘Paddy’ Burns "On 5th July 2003, we organised a charity night in 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. On the night we raised a total of £1,068.00. 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 £1,068.00 · Somerfield - Dronfield Store (donating widescreen TV) £ 516.50 · Sponsored 10k walk £ 90.00 · Car boot sale £ 80.00 · Friends’ donations £ 100.00 · Pool tournament £ 27.00 · Somerfield raffle (several prizes donated) £ 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)
In memory of Sebastian English Steph and Rubert Hunter opened Sebastian's fund with a £100 donation. They enclosed a 'flyer' with their Christmas cards in the hope that there would be a small response. They have been overwhelmed by the response. To date Sebastian's memorial fund stands at over £40,000. "I enclose a cheque for £250. I was a school friend of Seb's and therefore when I was given the opportunity to raise money for charity, to do it in memory of Seb was an immediate choice. Over the Easter weekend, I took part in the Devizes to Westminster Canoe race, which runs from Devizes to Reading along the Kennet and Avon Canal then from Reading to Westminster along the Thames. The race takes four days for juniors and we camped along the route in Newbury, Marlow and Teddington. We finished the race 18th out of 57 with a time of 21hrs and 20 minutes." Jon Peatman. "I am Sebastian English's cousin Catherine Lane and I recently celebrated my 18th birthday. Instead of having presents I collected donations for CRY - Sebastian English Memorial Fund. I therefore enclose a total of £235." Catherine Lane Haslemere Rugby Football Club held a charity match on the 27th February 2005 and raised £488 for CRY. "Some of my old mates from Yorkshire and Northumberland got together for a very enjoyable Golf Day on Election Day for the first Sebastian English Memorial Golf Day - It will be an annual event with the losers organising next year's day! Richard Heslop was the main organiser " Rupert Hunter. The total raised on the day was £3250" Mr. Gary Dudman arranged a golf day on Wednesday 20th April for friends, colleagues and business contacts, 76 players turned up on a glorious day at Hankley Common Golf Course, near Farnham and as a result of this, I have pleasure in enclosing a cheque for £3,300" Rupert Hunter. Juliet MacColl organised a charity cinema night at Alton Cinema and raised £568 for CRY. The money raised was split between two charities - CRY and children's Liver Disease Foundation. Issue 39
Cardiac Risk in the Young
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39
In memory of Sebastian English
CRY
CRY
Sebastian was like any other 15 year old you may know. He was bright, witty, sporty, smiley and so very popular and happy. On Sunday 15th February 2004, whilst playing rugby for Haslemere against Camberley, Sebastian collapsed and died as he was retrieving a ball that had rolled out of play. Just over ten years earlier, his father Howard English, died aged 32 in almost identical circumstances at Esher RFC. Howard was diagnosed of having died of a heart condition called floppy mitral valve disease. His wife, Stephanie, was assured that this condition was not hereditary and that Howard's death was a tragic one off. This proved to be a tragic misdiagnosis. After a thorough autopsy, the cause of Sebastian's death was established as ARVC (Arrhythmogenic Right Ventricular Cardiomyopathy) a genetic heart condition that can lead to sudden death. Reality hit. It was now clear Howard had died of ARVC and that Sebastian could have been saved. Sebastian had two direct siblings, Sabrina and Titus. They had a (50/50) chance of developing ARVC and despite screening every three - six months; it was unlikely that a definitive answer as to whether or not they had inherited ARVC would be possible until the mutant ARVC gene had been found in the family. This could take at least five - ten years. Thanks to the remarkable work of Dr Perry Elliott, his team at The Heart Hospital in London, and many others committed to finding genetic illness, the mutant gene, plakophilin 2, was found in the family. Gloriously, Sabrina and Titus have not inherited this gene and can now look forward to leading fulsome lives. Stephanie married Rupert, a long-term friend of Howard's, when Sebastian was six. Immediately, he announced that Rupert was Daddy and that was that. Happy years followed and when his new brothers, Marcus and Rory were born, he welcomed them enthusiastically. Sebastian was the talisman of the family. There have been many different events organised by many people since Sebastian's death. From a wonderful day of events at Haslemere Rugby Club to friends and Masters at Sebastian's school, Lord Wandsworth College, who have just cycled 330 miles from Anglesey back to the school in Hampshire in six days. From golf days in Surrey and Yorkshire to sponsored canoeing. From a Cinema evening in Alton to schools adopting CRY as their chosen charity, and selling hundreds of wristbands. From a very special Poker evening in London to so many friends who responded to a Christmas card flyer...and there are many more events planned. It is the passion and drive of the family to continue to raise awareness, and reaction from an article in the Daily Telegraph and an interview on Radio 4's Home Truths in May has been extremely positive. Sebastian made a lasting impression on all who met him. He was so genuine and completely lovely. It is therefore no surprise that so many have wanted to raise money for CRY in his memory, as well as raising awareness of genetic cardiac illness that can lead to sudden death in young, often sporty, people. Rupert Hunter
We would like to thank those that have made a donation to CRY in memory of Sebastian Allen & Overy LLP Mrs. Diana Anscombe Ms. C. Ayrton-Grime Mr. P Bergquist Ms Jane Billinghurst Mr. Chris Bird Brian & Jo Bird Mrs. R.M.M. Boston Ann & William Boyle Mrs. Jean Bridgford Mrs. E.P. Brown Ms. Beth Champion Ms. Jill Colvin N.J. Colvin N Corlett (Essential Cuisine) Mr. Mark Davies Ms. J Davies-Evitt Mike & Lucy Dickson Ms. Elspeth Dixon Mrs.K. Dobson Mr.J.A. Douglas Mrs. Nicola Earlam Darren & Sue Ellis Ms Ann Estridge Mrs. V Evans
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Sandy Elizabeth Furguson Miss Nicky Goudge Mrs. Catherine Grant Mrs. Mary-Lou Gravestock Sir Ronald Hampel Mr. Joh Harvey Mrs. Liz Hinson Mr. & Mrs. A Holdsworth Mr. & Mrs .W. Holdsworth Ms Jenny Holgate R.T. Hull Lewis Mr. W. Kessler Mr. & Mrs. P. MacColl Mr. Christoper MacColl Mr. & Mrs. A Marchant J.C. Marshall Ms. Sara Mitchell Miss J.S. Montefiore Mr. Nick Moss Mr. Alexander James Myddelton Mr. R.T. Myddelton A.D. & H.M.Newland Mr. A. Newton Mr. Steve Nicholson
Cardiac Risk in the Young
Mr. & Mrs. G.W. Owens Pali International Mr. & Mrs S.G.Parrott C.H. & S.J Peacock Mr. Richard Peirson Mrs. Patricia Poole Mr. Martin Pope Portsmouth Grammer School Pramerica Real Estate Investors Limited Mrs. C.M. Price Mr. G. Rees Mr Phil Richardson Mr. J.J.M. Ridley Mr. Alan Robinson (at the Corbridge Cookshop) Dr. & Mrs. Colin Ruck Mrs. Jane Rushton Ms Georgina Ryott Miss Joyce Sawerby Ms P. Shaw Mr. & Mrs. Shaw Mr. Nigel Sherlock Mr. M.J. Shoesmith Mrs. D.A. Short
Mr. A.V. Silverton Mr. Peter Smith Mr. & Mrs T. Spencer Mr. Peter Stafford Andrew & Amanda Stothert Mr. Andrew Sutcliffe Mr. & Mrs. M Tabard The Lee Bakirgian Family Trust The Neishs The Peter Kershaw Trust The Wren Charitable Trust Mr. Nigel Thomas Ms Nicola Thompson Mr. & Mrs M Thompson Mrs. G.E.P. Thornhill Mr. David Tully Mr. Andrew Twelves Mr. Philip Upton Mr. & Mrs. M.N. Waterhouse Mrs. P Wearden Emyr & Carol Williams Mrs. June Wood Mrs. A Worrall
Issue 39
Bulletin Board
CRY
CRY
Christmas Cards B L A Z E 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 2006. 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 go to their website www.blazefirewalking.com or contact the CRY office. There are a number of different events on offer to those who are wishing to fundraise for CRY.
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. Free Fundraising Events CRY is looking for adventurous people to take part in a number of free fundraising events organised by professional events company Skyline. If you fancy leaping out of an aeroplane; cycling in Vietnam; white water rafting; or trekking in the desert, then please go to the CRY website to find out more www.c-r-y.org.uk/free_fundraising_events.htm or phone the CRY office. No previous experience is necessary - just a commitment to raise a minimum sponsorship amount, and the willingness to face a challenge!
London Marathon 23rd April 2006 Every year we have a number of Golden Bond charity places available for brave souls willing to tackle this gruelling event to raise funds for CRY, and we also welcome any 'own place' runners who would like to run for CRY. Please contact the CRY office for more details.
Please give me a call or email me if you have any If you would like CRY to Please bear in mind when suggestions on how you fundraisings that it consider any item for organising would be brilliant if you could would like the content of Bulletin Board please take photos of your great day. your future fundraising It is also essential that when pages to be laid out in the email or fax details you write in to the office, that future. (including your item) you clearly state how much was raised, by whom and if it’s Best wishes through to Steve on fax: for a specific memorial fund. Steve Cox 01737 363444 Issue 39
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God’s Lent Child I’ll lend you for a little while a child of mine, God said, For you to love 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.