Quarterly Update Issue 35
CARDIAC RISK in the YOUNG CRY Patrons: Rob Andrew MBE, Jeremy Bates, Ian Botham OBE, Mark Cox MBE, Nick Gillingham MBE, Rob Jones MBE, Professor WJ McKenna, Sir Steve Redgrave CBE, Professor Michael Vincent.
CRY Unit 7 - Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey KT20 5LR Tel: 01737 363 222 Fax: 01737 363 444 Web site: www.c-r-y.org.uk e-mail cry@c-r-y.org.uk
God’s Lent Child I’ll lend you for a little while a child of mine, God said, For you to love while he lives, and to mourn for when he’s dead It may be six or seven years or forty-two or three But will you, till I call him back, take care of him for me ? He’ll bring his charms to gladden you, and should his stay be brief, You’ll always have his memories as a solace in your grief. I cannot promise he will stay, since all from earth return, Bur there are lessons down below, I want this child to learn. I’ve looked this whole world over in my search for teachers true, And from the folk that crowd life’s lane, I have chosen you. Now will you give him all your love and not think the labour vain Nor hate me when I come to take this lent child back again ? I fancy that I heard them say” Dear God, Thy will be done, For all the joys this child will bring the risk of grief we’ll run. We will shelter him with tenderness, we’ll love him while we may, And for all the happiness we’ve ever known, we’ll ever grateful stay, But should the angels call him much sooner than we’d planned, We will brave the bitter grief that comes, and try to understand”. This beautiful poem was handed to Tony and Evelyn Sayer as they entered the church for the funeral of their son, Kevin, on 4 April 1995. Eighteen year old Kevin died on the night we left Norwich after our first player/public screening. We hope it’s words comfort you and bring you peace.
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Meet our Representatives Keeley Ashley - Divisional Representative for the South West
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In July 1996 my brother Howard died suddenly whilst helping his wife Tina to bath their baby sons. He was just 33 years old. Our whole family were devastated that this young, fit, seemingly healthy man could die at such a young age. Howard was found to have ARVC, Arrythmogenic Right V e n t r i c u l a r Cardiomyopathy, a condition that we had never heard of. When we learned that the condition was genetic we arranged for the immediate family, including Howard's sons, to be screened. This was arranged by our GP and took place Keeley with Howard at his wedding in August 1992 at St George’s Hospital, Tooting. It was there that I became aware of CRY. Through CRY we learned that the same simple screening test could have identified Howard's condition and saved his life. I began fundraising for CRY, in memory of Howard, and to support them in their aim to put a National Screening Programme in place. The main focus of my fundraising activity has been through the organisation of an annual golf tournament. Since 1997 we have raised more than £25,000. A mobile screening was arranged in the village where Howard lived as a child. It was held at the local football club but the response was disappointing. We have also placed an ECG machine at Howard's GP's surgery, provided funds towards computer equipment in the CRY office and made a contribution towards the CRY Counselling Course. In 1999 I joined the CRY Counselling Skills Course and have now completed the Theory. The Counselling programme offered by CRY is extremely valuable. Sudden Death inevitably leaves behind family members with little or no support. The progress that CRY has made since 1995 is significant. The dedication of Alison and the CRY team has made great inroads into increased awareness of Sudden Adult Death Syndrome and how screening would greatly reduce the number of young lives lost. I am proud to be part of that team and believe that the saving of just one life through my work with CRY will mean that Howard did not die in vain. Keeley Ashley
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Issue 35 Newsletter by the Chief Executive
Spring 2003 was heralded for me, on a superb crisp April day when, along with hundreds of thousands of spectators and TV viewers witnessing the London Marathon I saw our Chairman, Dr Greg Whyte, pounding down the Mall in a huge (the biggest we could get!) CRY heart running cheering with his hands
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tales of training and accomplishment. Greg's valedictory comment of "an absolutely fantastic day" encapsulated the feelings of us all. A really special thank you to those 25 runners who not only ran but were part of our research initiative orchestrated by Dr Greg Whyte evaluating cardiac function in relation to running a marathon. This research was linked with a project run by Cancer UK. These special volunteers had ECG/Echo and blood taken not only pre-race at our reception on the Saturday, but
Greg running down the Mall to the finish line above his head and achieving the goal he had been training for of being the first full costume runner to cross the finishing line. Rumour had it that Greg had run the whole 26 1/2 miles in this surreal way, his energy and enthusiasm captivating the famous crowds that make the London Marathon such a unique event. Experiencing the symbiotic relationship that develops every year between runners and spectators - where the inspirer becomes inspired - is truly an extraordinary phenomenon. London Marathon contributions underpin our core funding and we are enormously grateful to our valiant runners and their generous sponsors for their tremendous fundraising efforts that it is anticipated will yield over ÂŁ90,000. Nearly all places were filled within 2 weeks of being advertised with 78 runners on the starting line, including a team of 9 from the army running in memory of David Harry. Our appreciation again to Kate and Robbi Fox our official photographers and our 14 stunning CRY heart costume runners, now in their third year, who are getting accustomed to being called tomatoes, apples, plums and cherries and are proving to be an established part of the kaleidoscope of costumes of this major colourful event. We again had the inestimable advantage of being able to offer all our participants a reviving leg massage at our stall set out by tree XYZ, where we were able to enjoy hearing them regale their Photographer Robi promises this was humorous and heroic NOT a staged photo! 2
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Jan Forster giving an ECHO to a CRY Marathon runner also immediately after they had finished. Many expressed how important to them it was to have the opportunity to help in this way, and it is a very sad coincidence that an apparently fit and healthy runner did die during the event. Hopefully this research will contribute to the understanding of why such tragedies happen. Congratulations to CRY's cardiologist and Trustee Dr Sanjay Sharma for having another important research paper published, this time in the highly prestigious Journal of American Cardiology (JAC). Sanjay says, "This is the first study that has defined the upper limits of normal in adolescent athletes giving us a gold standard to enable differentiation on diagnosis." If you would like a copy of the article please contact the CRY office.
Sanjay being interviewed The British Heart Foundation have had 3 consecutive research papers printed in recent months (copies enclosed) on Sudden Adult Death Syndrome asking whether new statistics could be the tip of the iceberg; whether taking over-the-counter remedies for common complaints such as hay fever or indigestion can induce potentially fatal arrythmias in some people; and highlightIssue 35
ing a test for risk that is being developed at Papworth Hospital. The BHF circulated a Press Release with CRY as the referral charity which has kept our phones zinging, provoking ongoing press interest in our work, culminating in numerous articles, TV and radio interviews. Copies of the articles are available via the BHF link on the CRY Homepage on our website.
In February 2002 I was invited to a meeting with the Chairman of the Coroners Review, Tom Luce and his team, and even though young sudden cardiac death only represents a tiny proportion of the total number of death certifications, with great courtesy and consideration I was asked to highlight for the investigating team the difficulties that our families face with the current coroner's system. My views on behalf of CRY on the systems currently in place for the investigation and certification of death were submitted after studying the consultation paper by the fundamental review of death certification and the coroner services published last summer. The details of my report were then forwarded to the Shipman team to be placed in the public domain as part of the material forming evidence for Dame Janet Smith's judicial inquiry. The Review of Coroner Services has now been completed and if all the excellent recommendations are implemented will undoubtedly have a dramatic effect not only on the efficiency of the system but most importantly on those that are affected. Kind or harsh management at this time is something that has an impact on individuals for the rest of their lives and it is reassuring that the consequences of how families are dealt with has now been so carefully considered.
Mat crossing the Sahara Mat Wilson has just completed his M.Phil in Left Ventricular Morphology and Function in Elite British Athletes. This is the first CRY sponsored post graduate qualification and was funded year one, by the Nigel Foster Memorial Fund and year two, by the Andy Gard Memorial Fund. Mat Wilson recently completed the Marathon des Sables running for CRY across the Sahara Desert. After a terrible fall down a sand dune from a height of 30 meters it was suspected that he had broken his leg. He insisted on completing the event with a knee that had been sprained so badly that it had ballooned to twice its normal size, and necesitated the use of a stick for support to complete the course. To read the full account of Mat's experiences go to www.c-r-y.org.uk/Marathon_Des_Sables.htm I would like to take this opportunity of welcoming 3 new Divisional Representatives, Keeley Ashley, (sharing duties for the South of England with Sally Reid,) Dee Shackleton (with responsibilities for the Middle of England) and John Lundy who is replacing Sinead Chapman in Northern Ireland. Personal problems have meant that Sinead has had to withdraw from this position and I would like to say how grateful we are to her for all the efforts she has made for CRY at such a very difficult time.
Finally a special thank you for the initiative of Mark and Debbie Loveday who were able to arrange through Jane and Clive Woodward the donation of an England shirt to CRY signed by his famously successful rugby team. Mark and Debbie, who joined CRY after the tragic death of their baby son Chad, organised a raffle of “the shirt” that was drawn at Twickenham on March 22 after the triumphant England v Scotland 4 Nations Rugby match. This project not only raised £6,688 but also made a terrific contribution to our raising awareness campaign. Over 3344 tickets were sold, including many both through our website and at the ground on match day. The interest generated in being associated with such a high profile event has wide-spreading ramifications and again underlines how - just by raising awareness of young sudden cardiac death - young lives can be saved.
Our CRY Surgery Supporter's Club was grateful to have a visit at their meeting in May from Stefanie Lillie, Cardiac Support Adviser for the British Heart Foundation. Stefanie's interesting and entertaining talk on the problems of rehabilitation after surgery was enthusiastically received by her young audience, and she in turn remarked on how much she had enjoyed speaking to such a unique and vigorous group.
Stephanie Lillie with the members of CRY SS Club Issue 35
Captain Martin Johnson, all six foot seven of him, drawing the winning raffle ticket for the CRY rugby shirt Cardiac Risk in the Young
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Jan Smith CRY’s Administrator Reports from Cardiological Sciences St. George’s Hospital Medical School
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CRY to move with Professor McKenna’s Unit Good day! This will be the last report for the CRY Update from St. George's. As you will know from previous issues a move has been imminent. Professor McKenna's Cardiological Sciences Unit has now left Jenner Wing at St. George's and is setting up systems and clinics at The Heart Hospital in Central London.
office. I will be able to collect e-mail from St. George's for three months after departure. I expect to be leaving St. George's by the end of July. Dr Behr continues at St. George's for the time being.
The move into a larger, dedicated cardiac service has been Professor McKenna's goal for many years. Clients attending his clinics will have access to additional specialist doctors, technicians, nurses and equipment. The service should blossom very quickly. Professor McKenna has undertaken a personal mailing to all his contacts. Once the new phone list is complete, a copy will be sent to all CRY contacts and this will include new contact details for the Screening Administrator as well. I will be e-mailing and writing to all contacts.
As of 25th July, the new address will be: Jan Smith, CRY Screening Administrator, The Heart Hospital, 16-18 Westmoreland Street, London W1 G 8PH, Tel No: 020 7 573 8888 (ext to follow). The actual address if visiting is: "CITY", No. 47 Wimpole Street, London W1G 8SE The building is located centrally between Oxford Circus, Bond Street, and Baker Street Underground Lines. Currently, there is no free parking outside either the Heart or 47 Wimpole Street, but NCP car-parks are nearby. A map will follow as soon as available.
If you have problems in tracking me down, please contact the CRY
Events Onto business - CRY has held five Family Mobile Screenings since our last Update. The Allan family held a screening in Newcastle in January, with support from the Marriott Hotel. In February, the team travelled to North Wales, to an event organised through Doreen Harley. Again, incredible support was offered by the Beaufort Park Hotel, which was our base and event venue. This was followed in March, in Ipswich, to the Courtyard Marriott, for an event set up with Robi and Kate Fox. Up to Redcar for a return trip with Kenny and Maralyn Bowen in April, who braved several shocks in the immediate run up to their event. A big thankyou to them for sticking with things! This was their fourth screening with CRY, a remarkable achievement for their community. And then back to Darwen with Granville Staff and Irene Wickers on June 21st, again for their fourth screening event. Thanks go to all the staff of the Darwen Access Point for their help and support. The total number seen at these events (not including our last event) 186, with 5 cases requiring further attention. Results for
Darwen will be available as of next week. Thank you to all those CRY families, who have spent their own time and a great deal of effort and organisation to make these events possible and our terrific team members who are becoming increasingly well travelled. Well done! Sally Reid and her team carried out an ECG testing in Sandhurst in Berkshire, on 22nd March. Joy Powell also undertook her first combined Education and ECG Session in Worcester on March 19th. Tony Hill travelled to Worcester, with Monica Harries, and the day of testing was supported by Dr Greg Whyte who provided a lecture on ECG changes. Both Sheralyn and Joy attended- and want to know when they can have another one. A total of 61 clients were reviewed from these two events. Sally Reid is also looking to hold another testing on 30th August. CRY also returned to Millfield School on the 8th of May, to review 65 students. Thank you to everyone involved, including Gloria Moss, who pointed us in the direction of technical support.
Sports Screenings We returned to Sutton Lawn Tennis Association on 10th June to screen 14 players. Thanks to Lorna Carby and Brenda Barham for the ability to rise at daybreak. Events coming up are Lawn Tennis at Welwyn, on 9th September, Lawn Tennis at Leeds on 12th September, Rugby League in Leeds on 13th September, and Lawn Tennis at Loughborough on 17th September.
memory of Leon Manners on 25th October, and a possible second event with Doreen Harley on 8th November. This is due to the numbers seeking screening in North Wales. We have an additional three other events to discuss and finalise……so if these go ahead, we'll let you know! Tony Hill will be taking a well-earned break during August. We try to avoid July and August for major events due to the absence of staff and clients owing to the school holidays.
We also have a Family Screening booked with Julie Hatton in
External Groups seeking to support CRY We have now developed a new service for those groups who may want to support the work of CRY, but who are not directly linked to CRY because of a personal loss. Originally, CRY offered families the opportunity to fundraise for equipment using Ring Fenced Funds. We have now expanded this service, which will be available to groups, companies and other charitable concerns. In recent months we have had a number of approaches from groups who want to purchase equipment for their local community in support of the work of CRY, and so the service has been
broadened in response to this developing area. Purchases can be made, either in memory of someone they knew or in general support of the charity. If you know of any groups who might be interested in funding equipment as a separate concern, you might want to give them our details. They can contact me directly, via CRY, and I will be delighted to send them an information pack. This may be of special interest to companies who have a charitable allowance budget, or groups such as the Masons or Rotarians.
Western Isles Update We hope to return, with Alex and Fraser Fotheringham’s support, to Western Isles for the follow up testing for students who are based on Harries and Benbecula. Discussions are underway to see if this is possible in the Autumn of 2003. Please don't hesitate to contact me if you have any queries regarding the move, or anything to do with screening, testing or equipment purchases. Kindest regards. Jan Smith 4
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Report from Steve Cox CRY
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This is the first time we have issued the Brochure Update in the new magazine format. Some of you may have received a copy of issue 34 in this format. If not, we still have some issue 34’s in stock, so if anyone would like us to send them one, please just call the office. The numbers of requests for CRY literature is steadily increasing and we have found that we are now printing enough for this to be the most cost-effective style. This is a huge step for any growing organisation to make in regard to publications which we hope you will be pleased with. Who knows one day it may even be cost effective to print in full colour! CRY’s New Publications We have recently had some CRY folders printed which may be of interest for those of you who send out CRY presentation packs to potential fundraisers, especially if approaching larger businesses. Please call Fran if you would like us to send you one to keep all your CRY leaflets together. We have also printed up a few thousand plastic bags which are available for fundraising initiatives, or maybe even just for that trip down to the local supermarket! Cardiomyopathy Association CD Rom The Cardiomyopathy Association has recently released a CD rom covering Hypertrophic and Dilated Cardiomyopathy. This is an excellent educational guide including information in both audio and graphic formats, as well as a number of video recordings of Professor McKenna explaining the conditions. If you would like to order a copy please contact the CA on 0800 018 1024
New CRY Christmas Cards We have finally chosen this year’s Christmas cards and hope you will be pleased with the choices we have made. If your company would like to preorder some, please contact me asap as I will soon be confirming the quantities of each card. If you would like to see the cards in full colour, their sizes and their costs go to www.c-r-y.org.uk\christmas_cards_charity.htm
John Bennett has once again painted a fantastic card especially for CRY, and this time it is Durham Cathedral. Many of the cards from last year will also be available although we have not decided whether to make them into variety packs or not. Your views would be appreciated.
New website pages Sponsor forms You can now download a variety of Sponsor Forms on line including one for the upcoming Great North Run. Please go to www.c-r-y.org.uk\sponsorforms.htm
On line sponsorship There are now guidelines available to help you set up your own
online donation page for CRY at www.c-r-y.org.uk\justgiving.htm An increasing number of people are using this as an excellent way of raising funds by emailing this to everyone on their email address book. At this year’s London Marathon Greg Whyte emailed his page out, and within an hour hundreds of pounds had been donated to his account.
London Marathon 2003 / 2004 This years London Marathon has once again been a huge success. Many thanks to Robi Fox (left) for taking the photos seen on pages 12-15 of this update. Once again he has captured the many mixed emotions of the day. It’s always great to hear people after the event saying ‘We saw lots of your runners again this year’. It is truly a fantastic raising awareness
event for CRY as well as such a major contributor to Core Funding - and the money is still coming in! If you or a friend would like to run in 2004 please think about applying for a direct place (approx. 30% success rate and a personal cost of £25). These will be open to the public in early October. “Own place” runners are so valued by any charity and we will pleased to gaurantee you a place in case you are turned down.
Recycling for CRY If you are interested in helping CRY by recycling ink cartridges you may want to consider Cartridges4charity. (www.cartridges4charity.co.uk) All the details, including links to the main site, are available at www.c-r-y.org.uk\cartridges4charity.htm. Robi Fox recently contacted me with over 200 phones (most of which were a bit dodgy looking with broken screens etc) for recycling and we were all delighted when this raised over £600. If you have access to mobile phones for recycling please give me a call to discuss how they can help with your fundraising.
If you would like an A4 or A3 copy of any of the pages or articles in this update (laminated) please contact the office Issue 35
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My London Marathon by Rob O’Brien
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On the 29th April 2002 my best friend Tim Daines died suddenly whilst playing football. The doctors could not find anything that would have caused his death, and at the Inquest the coroner came to a verdict of natural causes. Although they did say his death was caused by a cardiac problem. Tim's family and friends were absolutely devastated by his death that was so sudden, and to start with was totally unexplained. Tim was 30 years old and extremely fit and healthy. He ate good food, didn't smoke, exercised regularly and was immensely strong. His life was going really well, he crammed so much into it; working hard as a builder, playing football, going to the gym, spending time with his girlfriend Kirsty and still coming out with the boys. He had met the girl he wanted to settle down with in Kirsty. He had said to me, only on the day he died, that it wouldn't be long before he had a family. This was amazing to hear because not long ago he would have scoffed at any suggestion of marriage or children. But he was so happy with Kirsty that his mind was made up. They were looking forward to moving in together, and he had the possibility of a bit of land becoming available on which he might have been able to build his own house. He was excited about this and had drawn sketches of the house and how it might look, in the weeks before he died. He was a respected and skilled bricklayer and will be missed both professionally and as a friend by those that worked with him. It was a huge shock to everyone when he died. Most people, me included, found it very hard to believe and very difficult to cope with. Tim was a real true friend and I'm lucky enough to have known him for most of his life. He would joke sometimes that he was going to write a book on the stuff we used to get up to one day! It has been hard to come to terms with his death, and I will never forget the good times that we all had when Tim was around. Over the last few years I have applied to do the London Marathon, but never got in, and last year was no exception, once again I got the 'not this time' envelope. As I looked through the magazine I saw CRY's advert and decided to get in touch. When Tim had died a friend had given me some printouts from CRY's website, but to be honest I wasn't really interested at the time. But now some months later, looking through the CRY stuff again I decided I must run for them. When I spoke to them they said that all the places had gone, unless I wanted to run in a big red heart costume...ha ha I thought ...bring it on!! I had begun doing a bit of training back in November, doing about 4 or 5 miles 3 times a week, but once I found out I was in I thought I'd better step it up a bit. I started doing 6 miles 3 times a week and was feeling really strong, running really hard all the way at a fast pace. By mid / end of January I had built up to about 10 miles. When I got past 10 miles things started to go wrong, I really began to struggle and the runs became really hard from start to finish. I felt awful, and in February I did a 10k race which I struggled to get round! But I had a week or so off training and afterwards carried on with the longer distances and began to feel a bit fresher. By mid March I had reached 16 miles two or three times a week, this run took about 2 hours usually. To start with they were really hard but towards the day they became a little easier. I didn't go any further though on the Monday before I did 18 miles, this was a killer! So I rested the rest of the week until the day. We travelled up to London the day before on the train and stayed at a hotel. The day was absolutely amazing I couldn't believe how many people were making their way to the start and what a huge event it was. On the way to the start people were asking about how heavy it was and stuff like that, and a young lady even asked if she could take a photo of me carrying the costume.
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On holiday Rob, Wayne, and Ti m Issue 35
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Julie’s Interview with CRY Counsellor Course Tutor Julie Cayne 1.
What does your job involve for CRY?
Well, CRY employ me to run the counselling course and to do training with the SS group. 2.
How did you find out about CRY?
A colleague who designed the counselling course thought I might be interested in running the course. 3.
Why did you choose to help CRY?
Initially I was mainly interested in the course because I am involved in training and education as well as being a therapist but I also felt my training in bereavement and my nursing background would be important in this work. In fact I found I was also interested in what CRY was doing, finding a number of ways of helping and supporting people, I think there are always a host of different things needed in any situation, and also thought this would be a different kind of teaching and learning experience. 4.
Do you enjoy your work with CRY and if so, why?
In fact this has turned out to be a different experience so the learning has been for me as well as the students. I hope I'm open to questions and challenges from people and I've certainly found the people on the course got me thinking about things - we didn't always end up agreeing but it certainly brought the whole process to life. Another aspect of the experience is harder to explain but it is something like - I have found myself moved by the stories I have heard, perhaps we shouldn't be doing this kind of work if we are not! 5.
Could you tell me about your PhD?
Well I just have a year now to finish it so that is certainly on my mind! I am looking at the training of psychotherapists and counsellors and how they gain knowledge. But I am trying to research how we learn about the unknown which is to do with being able to work with people without thinking we know them or their problems (we really cannot read minds!!). This means that we have to struggle in the work with the client. We cannot and I argue should not be immediately searching for a theory to solve the problem. I think this also links to education at all levels ie that we get too caught up in learning facts rather than how to relate to each other. 6.
Could you please explain about the Bereavement Support Day and what part you will take in it?
The day, from my understanding, is to provide an opportunity for people to meet each other and a space to talk to each other. I will be preparing the group leaders, running a group, talking on the day and hoping to be there if anyone needs support. My talk will be about the importance of acknowledging our emotions and communicating them to each other, as part of the work of grieving. 7.
I understand you have trained as a nurse. How has this helped with your job for CRY?
Well this is a mixed blessing. I think nursing taught me a lot and certainly how to cope in an emergency or very emotional situations. However I also learned that a lot of feelings about difficult experiences do not get acknowledged by nurses themselves which in turn can make it difficult for us to really communicate with our patients. This got me thinking about the importance of relationships, which is why I went and trained as a therapist. This has been a lot about meeting others in ways that go beyond the usual way we speak of meeting and means a meeting of minds. 8.
“In fact this has turned out to be a different experience so the learning has been for me as well as the students.�
What are your hopes for CRY in the future?
I tend to take life as it comes and don't really have any grand plans, so I would say that I hope CRY continues to make the progress it has been, especially recently, but that for everyone's sake this gets easier. I think the most important bit is the chance it provides for people to meet each other, as in truly meet each other. 8
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WORDSEARCH STUDYING
S H P Q U I M H E
TEACHER LESSON WORKING EXAMS LEARN EDUCATE PUPIL STUDENT QUALIFY
A T E A C H E R D
F P U P I L Z I U
L G T D R O S G C
E E I N Y G N J A
S B A S E I K W T
S X L R K D N I E
O D U R N V U G X
N M O T W N R T C
ONLY JOKING by Julie I think my teacher is in love with me…..
2x3=7 X
How do you work that out?
8 + 2 = 82 X
She puts red kisses all over my homework! Maths Teacher - Blenkinsop, can you tell me the 9 times table please? Blenkinsop - You asked me that yesterday, don't tell me you've forgotten it already Did you hear about the teacher who had to wear sunglasses in the classroom? He had extremely bright pupils! What's the best snake to take into a maths lesson? An adder ! Issue 35
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In memory of Lewis Marsh "Sandhurst Town Boys and Girls Football Club have held their annual Lewis Marsh Memorial Tournament. It really is fabulous that they continue to do this for us and it enables the Fund to test the members of the club at the ECG sessions. We had a great weekend with them and raised an enormous amount of awareness so that parents have come forward and had their youngsters tested". Writes Sally Reid. The football club have raised £4,300 in memory of Lewis.
In memory of Anthony Lancaster
Through Steve Jolly, Hull Grammar School have been fundraising again, and have sent in £388.83 in memory of Anthony .
In memory of Levon Morland Pupils from Seaham School of New Seaham Primary School held a charity day Technology in County Durham have in October 2002 when the children were invited held a 'Non Uniform Day' at the end to take a donation along for CRY. of term. CRY was one of the nominated charities and £168.79 was Sue Phillips, a close friend of raised in memory of Levon. Jeff and Sandra Morland, whose 11 year old daughter goes to the school, went along to the school assembly and talked to the children about the aims of the charity. Sue talked about Levon and showed the children family photographs and articles from the newspapers about other fundraising events for CRY. The children were interested and asked lots of questions. Ms Dolan, the head of the school and all of the teachers gave the day their full support and £185 was raised for CRY.
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In memory of Jamie Bucknell The pupils at Joseph Rowntree School (Jamie's old School) have been fundraising for CRY again. They have held several events which will be ongoing. This time they have raised £70. Last year the members of the Flying Ducks Youth Theatre chose to donate the collection taken at the end of their production of West Side Story to Jamie's Fund. More recently they have been involved in another small scale production and they have asked that the proceeds of £58 be donated to CRY. Dear Keith, Debbie and Jodie Bucknell I am wrighting to you all to let you know that my friend Laura & I organised a sponsored walk last June to raise money for Jamie’s Memorial fund in aid of CRY. Around 10 friends went to Robin Hoods Bay, we walked 10 miles & between us managed to raise £235. We hope the amount of money we raised will help with your appeal and just to let you know that people still care! We are hoping to do another walk in aid of our friend Oliver who lost his battle with cancer 2 months ago. ( Top ltor) Luke, Alan, Shaun, Faye, Sam, Nicole, Laura (bottom) Claire, Rebecca
With all our love Faye Grosvenor and Laura Birch and all our friends from Yr 10 Canon Lee School XXX The Sixth Form at Bullers Wood School, in Kent. Have held a collection for CRY and raised £250
In memory of Joe Spivey We have received donations from Joe Spivey’s college. The Headteacher at St Anthony's Catholic Primary School wrote a lovely letter saying how well liked Joe was by the children and staff at the school and they made a wonderful donation of £138 In memory of Gregory Morris The Chester Catholic High School have been fundraising for CRY. They have raised a super £200 in memory of Gregory Morris who died on 11th November 2002 from ARVD.
"In our Georgian play last term (Love and Lawbreaking) people paid fees to get in. We used some of the money to pay for the bills and all the rest went to 4 different charities, and I chose yours. Inside is a cheque of £44 that I hope will save lots of lives, yours sincerely Stephanie Hutchings from Ermington Primary School." Issue 35
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What an ECG machine can give to a community CRY
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Dear Alison, We just thought to write to let you know what happened to us recently as it could help to show others how much the donation of 'CRY' ECG's can mean to either doctor's surgeries or to hospitals. You might like to use the following as an article in the 'CRY' newsletter. "Following the sudden death of our son Jeremy aged 14 from ARVC, with the marvellous support given from 'CRY' and many of our friends, we managed to raise funds for two ECGs in his memory. One was placed in our local doctor's surgery and the other in the Accident and Emergency Department of our local hospital with the particular aim of assisting in the diagnosis and treatment of any other members of our local community with suspected heart problems. We never realised quite what an important practical part that these individual ECG machines would play with our family. Last week Jenny had a minor heart attack with all the classic symptoms that we failed ourselves to realise at the time. It never even occurred to us what it was as Jenny is still a relative youngster, and we convinced ourselves that the fainting, pain and giddy episodes were merely a virus affecting the inner ear or even indigestion! We did eventually call the doctor out and although not initially concerned, he said that we needed to get an ECG done to check things out. When we went to the doctors surgery Jenny was put straight on one of 'Jeremy's ECG machines. This showed clearly that there had been a change in the T.Waves from earlier readings which was alarming in itself and they said what an important part the equipment was playing in the initial diagnosis of heart problems. Jenny went 'reluctantly' (as we still couldn't quite believe what was happening) down to the Accident and Emergency Department at our local hospital, and was put on another ECG machine which happened to be the other one that we had donated!! The A&E staff were really kind and said how they all wanted to use the 'CRY' machine in preference to any others available and how reliable and efficient it was. In the short time before Jenny was admitted to the CCU (coronary care unit) in the hospital, this ECG was used a further 3 times on other patients and was apparently always in constant use!! It was really uplifting and also emotional for us to see what an important part these two ECGs were playing and to what amazing use they were being put. Hopefully this article will help those other 'CRY' fundraisers who have provided or are raising funds for cardiac equipment to show what a tremendous positive benefit they can be to the community at large and really help to save lives. Jenny stayed in overnight and the following morning the consultant confirmed that looking at the results of tests that Jenny had indeed had a minor heart attack and following an angiogram this showed a minor blockage totally unrelated to ARVC that luckily was not serious". With love and very best wishes to you and the staff at CRY from, Jenny & Nigel Cole 16
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Cardiac Risk in the Young
Issue 35
Our fundraisers CRY
CRY
"Last Saturday I organised a 'retirement bash' at the jubilee hall, Loddon and requested donations to CRY instead of cards/presents. The results are enclosed totalling £320.20. I hope this contribution will make a difference as you keep up the good work. Yours Sincerely, Mr Norman Nichols." The Bionic Babes Collecting Box has raised just under £100, with lots more fundraising Hector ideas on the way. When I first arrived at Hinton Murray, Airfield I had to fill in a medical form and hand over my sponsorship money. I seen here then met my Tandem Master, Bill, and he explained to me what I had to do and with helped me with my jumpsuit and harness. It was a really lovely day, with beautiful Scottish clear blue skies and bright sunshine, but it was very windy and I had to wait for Flags and a the wind to drop before I could do my jump. Eventually I boarded the plane and Collection Bill attached my harness to his and gave me my final instructions. I had expected Bucket after to be very nervous, but everything the Leighton was so well organised and everyone Buzzard was so calm and professional that I Ten Mile felt fine, even when the time came to race on jump from the plane. The freefall last4/5/03 ed 40 seconds at about 130mph and which he it was amazing - just like flying! I ran for CRY loved it, but was still relieved to see the chute open safely above me. The Dale Newman completed a Tandem landing was very smooth, although Skydive on 16.02.03 for CRY. the strong wind meant that several He exited the plane at 12,000ft and people were waiting on the ground to raised an adrenaline pumping stop me being blown backwards, and that was that! I have wanted to do a para£120.00 chute jump for ages and now I want to do it again - it The Royal Hospital School, an HMC Independent was brilliant and I raised about £400.00 for CRY! A good Boarding School in Ipswich, Suffolk, enjoyed find- day. Isy Godfrey ing out more about CRY during its annual process to select the Charity focus for 2003. At Russell Delew was extremely impressed with the work the final Christmas Service a collection was that CRY does when he discovered us at a recent made which was divided between the charities Genetics Conference and donated £100 nominated of which £200 went to CRY The Spire Lodge 8056 of the Grimsby and District Province made a gift to CRY of £800 from the members of the Spire Lodge and a further cheque for £330 from the sale of CRY badges. Brother Charles Joass was the Lodge member who saw CRY named on television and nominated CRY to the Lodge charity committee of which Brother David Gelder is the Chairman. After a discussion in the Lodge all members thought it was a worthwhile cause to donate to. The Provincial Grand Primo Brother Brian Ross ROH at the Lodge Social and Presentation Night at the Civic Centre in Immingham presented the cheque to Brother David Gelder on CRY’s behalf. ‘Our order, which has Lodges through out the world tries to help as many charities as we can every year. May we wish you success in your future endeavours to try to eradicate this ailment in our young children.’ Brother David Gelder ROH Issue 35
Brother Desmond Montgomery, Brother Brian Ross ROH, and Brother David Gelder ROH
Brother Charles Joass, Brother David Gelder ROH Brother Brian Ross ROH presenting to Brother and Brother Desmond Montgomery David Gelder ROH Cardiac Risk in the Young
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Rowlands Castle Golf Club Centenary Year CRY
CRY
Captain's Charity 2002/03 "In just over 2 weeks time I shall be coming to the end of my term of office as Captain of Rowlands Castle Golf Club which, in our Centenary Year, has obviously been a highly enjoyable experience. It is accordingly time for me to wind up my Charity Appeal which, as you know, has been in aid of CRY and I am delighted to report that the support from the members of the club over the past twelve months has been tremendous. I am now pleased to enclose herewith a cheque in the sum of £2,949.71 being the result of the fundraising efforts and my members generosity and which I hope will assist you in your worthwhile campaign" Geoff Witte. Club Captain.
Geoff and Wife Penny at the Gala Ball
Recapturing the early days of golf - Ladies ready for play
Centenary Year Captains Geoff and Veronica Hargreaves
Ladies ‘Period Dress’ day in Centenary Year
Geoff and Club Professional Pat Roberts 18
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Cardiac Risk in the Young
Reincarnated - the 1902 Committee and their ‘barmaid’! Issue 35
Our fundraisers CRY
CRY
In memory of David Pollard "David was a member along with his close friends of a rock band called 'Not So Pretty' On January 17th 2003 they performed in a charity gig in memory of a much missed beloved friend and talented guitarist." Maggie White They raised £528
In memory of John Marshall Guests and Staff at the Midland Hotel, Bournemouth have been fundraising for CRY in memory of John. Claudette, the Entertainment Manager, has once again nominated CRY as her chosen charity of the year. Claudette and her team have raised a brilliant £1,100.00 The staff at The Durley Hall Hotel in Bournemouth have been fundraising for CRY again! Joan Mitchell has sent in £491 Thank you for your continued support in memory of John.
In memory of Christopher John Markham "Please accept this £100 in memory of our son, Christopher John, who would have been 32 on March 1st. He died on Feburary 10th 2002, while he was at his local gym." K Markham.
In memory of Gareth McDonald Mr & Mrs Chichester have made a great donation of £150 in memory of Gareth. The staff at Charles Street Job Centre Plus held a Christmas Breakfast Raffle and raised £163.45. "Lynette my Manager at work, has also made a donation. I was really touched by the thought that she could be so thoughtful and think of Gareth at this time of year in a giving way" writes Diane (Gareth's Mum) Robert and Barbara Foley knew Gareth from when he was very young. They sent a pleasant surprise to Diane of a wonderful cheque for £250.00 Diane organised a Christmas raffle at the Charles Street Job Centre. She approached Marks & Spencer and British Home Stores who supported the event by donating raffle prizes and £169 was raised.
In memory of Robert Poyser Diane Tolley (Robert's Mum) organised 2 Car Boot Sales last autumn. Her daughter Angela (Robert's sister) and husband, Jim, have also saved all their small change, donating £180
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Our Fundraisers CRY
CRY
In memory of Stewart Howard M&G Collins organised a disco and raised £354.20. Shortbread was cooked by B Williams and sold to raise £70. Jane (Howards' Mum) and her team organised a Christmas Fair and held a Garage sale which raised £534.
In memory of Lisa Jane Browne Donations made for CRY Screening came to over £170. "I have received a letter that the company had some money left in their Charitable Donations Fund at the end of last year, although they had given £250.00 in March 2002 towards my Counselling Course fund, they felt it appropriate to give a further £100.00" Writes Doreen Thank you to Urenco (Capenhurst) Limited, Chester. Doreen was given a donation for CRY of £150.00 for the help that she gaveto a family she supported
In memory of Ian Bowen The Evening Gazette (Trinity Mirror) have made a donation of £250 to Kenny Bowen who won their Community Award for the work he has done for CRY. Tony Finn works with Kenny (Ian's Dad) and decided to enter the Great North Run. It was his first time, and he was delighted to have raised £173 in memory of Ian.
In memory of David Harry David died aged 15 yrs. A collection was made at David`s funeral and £450.70 was raised. David`s Dad`s workmates at Solutions Northern Ltd made a collection and a fantastic £500 was raised in his memory. The Joseph Rowntree School in York (David's old school) has been fundraising again. With 3 private donations, and the school's contribution, £1607.07 was raised. The running team were outside Tesco Superstore in Salisbury on 27.02.03 The fact that soldiers were wearing combat dress and CRY hearts/T-shirts attracted a lot of attention from the public. The event was a great success for both sponsorship and promoting CRY. They raised £1106.64. As promised here is a quick outline of what David Webster has achieved for us. Lt Colonel Webster is retired and lives at 11 Buttermere Drive, Heatherside, Camberley. Since he knew about our proposed CRY charity fund raising, he embarked on his own sponsor hunt. David managed to raise in excess of £200, It was not the amount he raised that deserves the recognition, it was the way in which he did it. By the use of his network of family and friends he contacted sponsors both at home and abroad (Saudi Arabia in one particular case). Not only did he approach them for sponsorship, he also prepared letters and emails showing an accurate account of what our aim was and what CRY is all about. After the London Marathon had taken place, David paraded around his friends, family and neighbours sporting his CRY T shirt donning my medal........ 20
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Cardiac Risk in the Young
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Our Fundraisers CRY
CRY
In memory of Stephen Michael Gregory "Stephen died whilst playing amateur football in Tottenham London. He had never been ill all his life, so had never had any tests. His father died, aged 29 years, whilst playing squash in 1977 but in those days I was told my husband had probably had flu as a child which had affected the muscle of his heart" writes Mrs Mary Gregory. We have received a £500.00 donation from Leyland Trucks where Mary works. Stephen died on 9th May 2002 of cardiomyopathy age 27 years.
In memory of Janet Sheila Whitlock A collection has been made in memory of Mrs Janet Sheila Whitlock who died in October 2002. We are most grateful to her husband Mr M Whitlock for the donation of £1,120.00
In memory of Gregory Morris Gregory died on 11th November 2002 from ARVC (Arrythmogenic Right Ventricular Cardiolmyopathy). A collection was made at his funeral and £1,065.56 was raised. Diane Morris (mum)
In memory of Philip Abraham Mary Abraham (Philip's Mum) and her Flora Lite Team raised a final total of £1,905.37 A further cheque from Mary from her Bagpacking at Sainsbury’s Superstore Hedge End, Southampton on 21st Dec 02 Mary approached Sainsbury’s to see whether CRY was eligible for their Penny Back donation scheme. She applied and we received £100 in memory of Philip.
In memory of Laura Fox In memory of Sharon Bryant (Robbi Fox's Niece) donations from her funeral of £95 were given to CRY
In memory of Patrick Keefe Patrick's sister Lynne held a 'Fun Day' at the Shropshire Lad. With her team of supporters they raised £380.
In memory of Ian Merchant Barbara and Dennis (Ian`s Mum and Dad) raffled a rather large teddy bear and raised £250 in Ian`s memory
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Our Fundraisers CRY
CRY
Ullapool Air Cadets raise money for CRY in memory of Joanne Fotheringham ‘A major achievement was marked this week with the presentation of a cheque for the grand sum of £2,300 by the Cadets to Alex Fotheringham, local representative of the charity 'CRY' (Cardiac Risk in the Young). Several cadets and adult staff were sponsored to take part in the 13 mile Great Wilderness Challenge event in August last year. All finished in fine fettle having very much enjoyed the experience. Ullapool is the smallest Unit in the Highland Wing and has raised over £5,300 for CRY by participating in the GWC during the past four years.’ Flying Officer Armitstead, O/C 161 Ullapool D/F
Rear l - r Alex Eaton (Civilian Instructor), W.O. Peterson , Alex Fotheringham , Fraser Fotheringham, Pat Macleod (Civilian Instructor). Front l - r Cdt Peterson , Cpl Macleod , Cdt Boyle.
In memory of Dennis Rees "Please find enclosed cheque for £450.00 in memory of my late husband Mr. Dennis Rees, who sadly passed away from Sudden Adult Death Syndrome on March 8th 2001. I would like to thank you for all the information and help you gave us at this sad time." Writes Mrs Brenda Rees Issue 35
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Our Fundraisers CRY
CRY
In memory of Andy Gard The Tendring Casuals Running Club have made a wonderful donation of £310.55 Mrs S Vousden held a Jumble Sale in memory of Andy and raised £161.87 Staff and guests at The Glencoe Hotel have donated their fundraising from last year. Events included Quiz Nights and they raised a further £611.
In memory of Michael Turner
On Saturday March 29th 2003, a group of friends; Andrew Short, John Hammond, Oliver Giles, Oliver Topham, Samarth Rossi, Trevor Wale, Adrian May, Martin Davis, Stewart Burgoyne, Sam Quinn, Alan Lewis, Chris Quinney and Kenny Medley, played football for 9 hours to raise money in memory of Michael Turner who died tragically a year ago that weekend, aged 18, due to an unknown heart condition. “We decided that the money raised should be donated to C.R.Y (Cardiac Risk in the Young) to help with their research to prevent more horrific cases like these happening to the young and making people aware of these hidden problems. We managed to raise £186.50 between 13 players and pedestrians who donated on the day of the event.” “I hope that C.R.Y. continue to be successful in their further research and that more of these cases are prevented due to the awareness schemes they carry out.”
In memory of Mark Pover David Pover recently send in a donation of £1,180 in memory of his son Mark. A further donation of £100 was also received from Mr T Hollis in memory of Mark.
In memory of Paul Mereu Paul died suddenly aged just 26, of Coronary Artery Disease. A collection was made at his funeral, which was split between the BHF and CRY. £223.00 was raised. Nella Mereu (his sister)
In memory of Laura Bennett "Hobs Moat United Reformed Church in Solihull held a Sunday afternoon concert and a retiring collection after our Sunday morning service. My mother and I would like this donation to be in memory of Laura Bennett, daughter of John Bennett, my cousin." Writes Mrs Janet Ince. They raised £175 24
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CRY
The ‘H’ Howard Jennings CRY Memorial Trophy was held at The Little Hay Golf Complex
Winner Gary Peck (left) and his Team
Which way to the action?
This is how you do it! Roxanne and Jaz
CRY
Pat Mumford (Ladies Winner) and her Team Me and My Girl !
David and Alex Gordon (right). Travelled from Scotland for the event and raised £90 sponsorship Incredible, a month early this year and SUNSHINE!!!!! What a huge difference. With 80 Golfers, fewer than last year, we were hoping for a less hectic day. We raised £2,400.00 through golf fees, raffle, sponsorship and a silent auction; so all efforts were well and truly worthwhile. The support from the golfers and volunteers was amazing as always, with many familiar faces. Gary Peck won the 2002 event, who has won twice before. Second was John Shackleford, a friend of the family, and third Paul Trundell. Pat Mumford won the ladies trophy. The Nearest The Pin was won by Howard's Father, Terry Jennings (WOW Dad finally won a medal!!!), and the longest drive by Geoff Osbourne. Terry, John and Geoff all played in the same four ball (What can I say …. The sun was obviously shining on them). Den Dyer and his Team. Thanks for all your support
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CRY
The Ashley Team
on Sunday 1st September 2002 and raised a fantastic £2,400
‘Uncle Peter, are you sure you do it like that?’
CRY
‘Ha! Ha! Bet you can’t catch me!’
Super scorer Angela Masters and Jazmine with her hands full
Tee up!
Hang on Dad I’ve got work to do! The winning Team! Terry Jenkins (NTP) Geoff Osborne (Longest Drive), Christine Osborne and John Shackleford (second)
How does this work? Posing for the Newspaper See we did need the umbrellas up after all! There were a few red faces at the end of the competition, not due to embarrassment but a few warm rays. (Better bring your sun block for next year)! Thanks should be given to all who continue to support the event. These include Little Hay Golf Complex and manager Chris Gordon; Atlas Copco, Howard's employer, who put in a team of 16 players this year; Lloyds TSB who donated £500.00 and Hemel Trophies and jewellers who donated two of the medals. The 2003 event will be taking place on Sunday 7th September at Little Hay Golf Complex in Hertfordshire. Anyone interested in playing or supporting the event should contact Keeley Ashley on 01202 881234 or e-mail keeley@silentwhistle.co.uk Issue 35
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In memory of David Staff and Neil Wickers CRY
CRY
Dr Ahmed, Irene Wickers, Dr Gupta, the representative from Thwaites Brewery, and Granville Staff at the Presentation of a defribulator at the local centre in Darwen.
The David Staff Memorial Race The five mile David Staff Memorial Race, an annual trek in Darwen which involves 900ft of climbing in Sunnyhurst woods, attracted 166 runners. David who was a former Queen Elizabeth’s Grammar School pupil of Carus Avenue in Hoddlesden died aged 17 of Hypertrophic Cardiomyopathy after collapsing near the end of the 10k Darwen Dashers Road Race in December 1994. The event has been held annually since his death with the aim of creating awareness of heart disease in the young. Runners paid £3 to take part with all the proceeds going to CRY. The event was supported by Blackburn companies Akzo Nobel and Crown Berger, as well as Blackburn Sports Council. Andy Nightingale who competed in the race has sent in £545.00 in memory of David and the event raised just under £850 in total.
Granville Staff, David’s father at the start of the memorial fell race 30
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Bulletin Board CRY
CRY
Christmas Cards We will soon be looking for help in distributing our Christmas Cards and Christmas Card leaflet.
If volunteers could approach local business to see if they can adopt CRY.
We are also looking for a few volunteers to give up half day a week from September - December to work in their local ‘Cards 4 Good Causes’ shop in 2003. RING FENCED FUNDRAISING Please remember that unless you notify us and get the necessary documentation and confirmation from the office for “ring fenced” fundraising before you start a fundraising venture, all funds raised will be used for CRY Core Funding. Retrospective “ring fencing” is unfortunately just not possible. CRY cannot be responsible for any “ring fenced” fundraising unless it has been authorised. “Ring fenced” fundraising is for specific projects only. After the successful conclusion of the authorised project, fundraising will be directed again to CRY Core Funding. Because of the appeal of certain projects, some will have a waiting list.
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Blaze is an organisation best known for their Firewalking Experience. If you are interested in something completely different- like learning how to walk barefoot across broken glass, experience being a fall guy or bodyguard or ‘simply’? surviving the call of the wild for 5 days and nights - you may finally have found the place to be. For more information on these events either contact the office or go to their website www.blazefirewalking.com. There are a number of different events on offer to those who are wishing to Zip Wires, High Ropes Courses and Raft Building - you can be taking part in all these exhilarating activities and more as part of a unique two-day residential adventure Challenge being promoted by CRY. CRY is currently looking for teams of eight people to take part in this nation wide Team Challenge which is taking place at purpose-built Outward Bound centres set in idyllic locations across the UK. Teams take on a variety of mental and physical challenges over a two-day period which is designed to promote teamwork within an enjoyable outdoors environment in the Lake district, North Wales or the Scottish Highlands. No previous experience is needed as all training is provided and if your team raises the minimum sponsorship level of £2,800 for CRY then all your team members get to take part for free!
Great North Run - 21st September 2003 In many respects the Great North Run rivals The Flora London Marathon, with more starters and finishers. It has grown in its 22 year history to become the world's biggest half marathon and biggest running event in Britain with 47,000 entries. If you are interested in joining the CRY team please contact the office.
If you would like more information please contact the office.
Please give me a call or email me if you have any Please bear in mind when If you would like CRY organising fundraisings that it suggestions on how you to consider any item would be brilliant if you could take would like the content of for Bulletin Board photos of your great day. It is your future fundraising please email or fax also essential that when you write pages to be laid out in details (including your in to the office, that you clearly the future.
item) through to Steve on fax: 01737 363444 Issue 35
state how much was raised, by whom and if it’s for a specific memorial fund.
Best wishes Steve Cox Cardiac Risk in the Young
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