CRY Update Magazine - Issue 33

QUARTERLY UPDATE

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.

Summer 2002 - Issue 33

Meet our Representatives

County Representative for West Yorkshire - Amanda Edgar On the 18th August 1998 my husband, Nigel Edgar, died in his sleep. We were all devastated.

We couldn’t understand how Nigel could have died; he was only 33 years old, fit and healthy.

Through CRY, I have learnt that undetected heart abnormalities can lead to sudden death. We were not aware that Nigel had an enlarged heart, if we had, his life could have been saved.

Screening saves lives and I would like to see a National Screening Programme take place and strongly endorse CRY’s work in this area. Our children, James (10) and Jane (8), are now being screened. I would like to see all school children being screened.

Screening raises awareness of symptoms and saves young lives.

Amanda and Nigel wedding 17th June 1989

I don’t know how we would have coped without the help and information that we have received from CRY. I would like to be there for other bereaved families and I am presently taking the CRY Counselling Course so that I can do just that. I know how much talking to other families has helped me and I think the counselling training that CRY gives families is excellent and gives us a real chance to feel confident that we can hopefully help others.

I have been really pleased with the response we have had to raising funds to help CRY achieve their aims. James and Jane have also enjoyed raising funds and have been involved in a sponsored walk and a ‘come as you please day and bun sale’ at their school. People have been so interested in CRY’s campaign and have really rallied round. Getting CRY’s message heard is so important to all our family now.

Amanda Edgar 1

Summer 2002 Newsletter by the Chief Executive On a hot Monday in July the Honorary President of our Centre for Sports Cardiology, Ian Botham, somehow found the time in his frenetic schedule to squeeze in a visit to Westminster and launch a hugely important event for CRY - the instigation of an All Party Parliamentary Group (APPG) for cardiac risk in the young. This anchored the culmination of a journey whose passage began in 1997 after I was contacted by Adrian Woodhead shortly after his wife Sarah had died suddenly in his arms aged 28. Sarah's nausea and fainting had been dismissed as symptoms of the pregnancy that they were both so hoping for. The reality was that Sarah was suffering from cardiomyopathy, the condition that had killed her mother, just after she had been born. Adrian vowed that in memory of Sarah his goal would be to target change through Government and his MP, Julian Lewis, pledged his support for our campaign.

Last year Julian was finally successful in his application for an Adjournment Debate on cardiac risk in the young and the Minister Julian Lewis MP of Health, Yvette Cooper, responded in the House, to his appeal.

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After attending our Parliamentary Reception in April, Jeff Morland's MP Kevan Jones, discussed with Julian the potential for co-ordinating an All Party Parliamentary Group - our ultimate goal - and this reached fruition in July. In his speech to galvanise MP's support Ian emphasised his determination to see changes made telling MP's "at the end of the day these deaths are indiscriminate.

They affect all sorts of people - amateur sportsmen, professional sportsmen, a guy playing on a pitch, a kid at school sports day. It is something that must be addressed Kevan Jones MP and has been swept under the carpet for too long." For a charity such as CRY to have an APPG is a fantastic achieve-

ment and gives us an opportunity to have a

Iam Botham arriving at Portculis House

voice and influence in the corridors of power the place where decisions are made, and I am most grateful to Adrian and Jeff for all the work they have done with MP’s to make this happen.

We have had 4 major national media articles since our Spring newsletter, in the Sunday Times, The Times, PE Sport and The Paramedic a magazine which is circulated to every paramedic in the country. Consequently although the summer holidays is usually a quiet time in the CRY office giving us a much longed for opportunity to catch-up, we have instead been fielding hundreds of enquiries for our screening programme, which with Staff holiday breaks has kept us working at our usual breakneck pace!

John Inverdale took timeout from his hectic schedule during The Championships at Wimbledon to accept a cheque in the Wimbledon Museum on behalf of CRY from his friend Mark Loveday. Mark had raised an astonishing ÂŁ15,000 by running with friends at

Ron Presley, Mark Loveday, John Inverdale, and Bob Alsop

the London Marathon in memory of his baby son who had died suddenly last year. The last time I had seen John was when he was participating in our very successful tennis pro-am at Sutton Tennis Club, and he expressed a particular interest in CRY's programme particularly in relation to sport.

Another important step in raising awareness amongst medics has been made by Doreen Harley who has been working for some time with the Flintshire local health group who have distributed CRY's literature to the 26 area GP practices. All Cardiologists serving the 3 main hospitals for North Wales and Chester are going to be included in this initiative that it is hoped will now be extended to other GP surgeries in North Wales.

Our very important, and long awaited, ECG Testing Programme in the Western Isles has now been concluded, a project that has taken two and a half years to complete. Introducing ECG testing to the Hebridean Island of Lewis

Steve, Alex, Sanjay and George at the Western Isles Screening

has not only given us the opportunity to check the cardiac health of the Island's schoolchildren but also to raise awareness of CRY's programme North of the Border with a number of newspaper articles, radio and TV interviews.

The testing was in memory of Joanne Fotheringham whose Headmaster George Moody offered to be the volunteer administrator

of this event that will yield important research on the efficacy of ECG testing amongst adolescents. George was able to bring his immense experience and understanding of local problems to the organisation of the ECG testing programme, and secure the interest and co-operation of all relevant parties. Organising any screening event is challenging and time consuming - managing an event on a remote Island in the farthest reaches of the UK was an accomplishment that CRY can be very proud of!

The Genetics Knowledge Park is an alliance between a dozen NHS Hospitals and Medical Schools in London, and they have organised a conference on Genetics, Human Health and Disease and asked our Patron Professor McKenna to invite CRY to attend as one of a number of specialist support groups. This will be held at the Natural History Museum, London on Saturday November 30 and is for anybody who wants to know about genetics. A flyer on the conference is included with this Update.

I am also delighted to have been asked to speak at The Athletes Heart Symposium on "the impact of sudden cardiac death - the case for screening" to be held at University College London, on December 17. This symposium is on day one of a 4-day meeting of the UK Physiological Society and includes a galaxy of famous names in the world of sports cardiology including many of those familiar to CRY supporters - Professor Bill McKenna, Professor Paul Thompson (USA), Dr Dominico Corrado (Italy), Dr Len Shapiro, and Dr Sanjay Sharma.

In conclusion it is interesting to note that at the beginning of 2002 we made what we thought was an ambitious decision to print 10,000 of both our new General and Parliamentary Leaflets - an order that was conscientiously calculated to be sufficient to last the entire year.

Astonishingly within 3 months supplies were exhausted and we had to urgently reorder another print run of 10,000! This is now exhausted and we have again reordered 10,000! It is by such barometers that we can measure the pace at which CRY's campaign message is being promulgated.

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Jan Smith CRY’s Screening Manager Reports from Cardiological Sciences St George’s Hospital Medical School A warm welcome to the News section from St George's. September has been a busy month, catching up with screening events with the Western Isles project under control.

Sports Screenings We have had a run of mobile screening events in conjunction with The Lawn Tennis Association. Tony Hill and Steve Cox have seen much of the English road network in recent weeks doing sterling work operating the screenings on site. Our first screening was in Welwyn on 5th September, followed by Bath on 10th, Loughborough on 12th and Leeds on 27th.

Rugby Football League Working in conjunction with the Rugby Football League, CRY has been invited to attend a multi testing medical day with the RFL Junior Players - 15-17 year age group. With two Echo technicians, two Cypress Echo machines (one of them is on

loan to us for the day) and one ECG technician, the clinical team have 40 players to screen in a day. Dr Sharma is the attending Cardiologist for this event, which is on Saturday 28th September.

ECG Testing Sally Reid is holding an ECG Testing session also on Saturday 28th September in Sandhurst, Berkshire.

Western Isles Screening The CRY team returned for a follow up trip to the Western Isles of Scotland further to the ECG testing study held in May and June. Dr Sharma flew up to Stornoway, together with Pauline Hales who undertook the Echocardiograms. Steve Cox also attended (in between the tennis screenings) a feat involving some extreme diary juggling, since the most suitable weekend transpired to be the 6-9th September!

Out of the 288 young people reviewed, 22 clients were invited to attend for cardiac screening. Nineteen people were able to attend on Saturday 7th September at the Nicolson Institute in Stornoway, on the Isle of Lewis. BBC Scotland came to the screening and Dr Sharma was interviewed.

We had been warned the weather wouldn't be the best - a picture of Sanjay Sharma on the beach, umbrella in hand, testifies to this fact! However, everyone involved in pulling this event together did their best to ensure the team was

made welcome and comfortable. Alex Fotheringham was able to get over for the weekend and was "overwhelmed and delighted" at the work carried out in her daughter’s name.

"Everyone is talking about it!" she reported, "what will happen next, where will it go; we've had nothing like this for years".

Ms Jane Adams, Director of Nursing at The Western Isles Hospital provided us with superb ECG Technicians, and two returned for the event on 7th September. All the Medics involved were enthusiastic and supportive of the aims of the project and CRY is now looking at developing this study in other Islands in the area, once funding is secured.

Special thanks go to Mr George Moody for all his support. His background knowledge of the Island and personal approach to those involved was invaluable to CRY. Alex presented Mr Moody with a painting of Northern Ouist in the Western Isles which was supplied by CRY's John Bennett.

St. George’s Dr Sam Firoozi leaves St George's for his rotation work which last two years. Sam has attended many CRY screenings and we hope will still be able to join us from time to time as his clinical programme allows. In the meantime, we wish him lots of luck for the forthcoming two years.

As the profile of the charity continues to grow so do the number of written enquiries, e-mails and incoming calls. If you find the phone is engaged a lot, please phone the CRY office number and request that a message is passed on. I realise that this can be frustrating, but plans are afoot to reduce the number of general enquiries through production of an information sheet.

Other Medical Information As you are probably aware, CRY has various funding opportunities. If you decide that you would like to fundraise for the charity, you currently have three options. Firstly, you can make a straightforward donation to CRY. Secondly you can request a Memorial Fund, which is a way of tracing your own financial contribution to CRY in memory of your relative or child. In both instances your fundraising goes directly towards CRY development and core funding costs. Support of this kind is essential; it provides the platform from which the charity is able to expand its services. Core funding covers office costs, staff time, production and publicity materials and our initiatives improve the services offered to families, old and new to CRY.

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The third option is to request a Ring Fenced Memorial Fund.

Ring Fenced Funding is only set in place when the CRY contact has a specific local community project in mind and a period of 12 months has elapsed since they linked with CRY. This lead in period allows families some much needed space and time to get to know the Charity and decide what they would like to aim for. It may be that the intention is to buy an ECG machine for a surgery, perhaps another piece of equipment,

or a mobile screening session. The project must be agreed with the CRY office. With a few forms signed and returned, incoming monies can then be accrued for a specific community project, with CRY deducting 25% of incoming monies, which goes towards support for CRY core costs. The project work with families can require a lot of support which, is why a deduction is necessary.

Ring Fenced Funding cannot be backdated. Please note that there is a significant difference between having a Memorial Fund and a Ring Fenced Fund.

We know of no other charity that is prepared to place its supporters in such a position of responsibility. Please help us to keep this option open by discussing your plans before you put them into action. If you have a specific project in mind, let the office know, in writing, what you would like to do - if CRY is able to help, we do everything possible, within our guidelines, to enable the family to take their project forward. However, CRY cannot be held responsible for project work that has been set in motion, without the knowledge and consent of the Office.

Report from Steve Cox CRY Manager The past few months have been hectic to say the least. Sadly Pat has broken her hip and has needed some time off. Because of this, many thank you letters have not been sent. So sorry for the delay, we have not forgotten, its just we are so dependent on Pat’s help. Once again Tony has been called out of retirement and is helping to cover until she is better again.

Upcoming Conferences Genetics Conference - Genetics, Human Health & Disease.

We have sent out a copy of this upcoming conference for anyone who is interested in further information about genetics. It is for those without a medical or scientific background. The aims is to create an enjoyable, jargon-free environment in which questions can be answered. You will also be able to ask questions in advance. CRY has been invited to the conference. Come and talk to Professor McKenna and other leaders in the field of Genetics.

CRY Christmas Cards We still have supplies of CRY Christmas Card Leafets for distribution. Please call the office if you would like us to send you some.

CRY Website Our home page now receives between 400 and 500 hits on the average day, and up to 2000 hits following a raising awareness appeal. At a meeting last week we were the envy of a number of people in the London Marathon with our page coming up higher than many London Marathon sites. Much of this is down to the excellent work of David Gregory.

Please email us any phrases you would use when searching for further information in this area.

With so much activitiy on the web site we hope this to be developing as an excellent area for you to promote your upcoming events. Please send in details of any annual or updoming events you would like advertised.

For the first time last week we had a medical company ask to promote themselves on our site. Although we will be keeping the Home Page specific to CRY, this is an excellent marker that the work put in on the website has paid off and is gaining international credibility.

So many raising awareness articles are now coming in, you may have noticed in some cases we have put more than one on a page. As a result the font may be quite small, so if you are having difficulty reading any of these, please remember the full text is on the web site for all articles that are in this Update.

London Marathon 2002/3 K IAC RIS CARD G YOUN IN THE

fit and arently the UK in to 8 ‘app week 4 g people die nditions Every y’ youn sed heart co th al he agno of undi L

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AP atho CRY’s ora London Mar Fl in the fund: r CRY lp us to “Run fo t will he

After the ongoing success of the last two years London Marathon we have been advised to raise our pledge up to £1250.

There will be 8 heart costumes places available with a pledge of £500. These places will only be available to CRY fundraisers and those who have run in costume over the past two years, so please call soon before all the places are taken.

We know this is quite a big jump but it is still lower than many charities, and with CRY being so dependent on the London Marathon for core funding it is important that we maximise its potential.

As soon as the next marathon poster goes to print I will place a copy on the marathon page of the website. If you would like copies to distribute in your local community you will be able to download them or alternatively contact the office for us to send out.

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ppor orts Your su for Sp sh Olympic Centre iti . The CRY gy at the Br lo Cardio l Centre mme ca progra Medi ening art scre dden . CRY’s he into Su e search th . Medical rendrome and Sy Death heart ess of athlete’s awaren us raisein the Young & help Risk affected Cardiac pport those lessly. and su g need e dyin ge things.’ sters ar chan ‘Youngn and must OBE - e am We ca th Bo gy t of th says Ianry Presidenorts Cardiolo Honora ntre for Sp 363 222 on 01737 CRY Ce or call us

to the tion go re informa For mo

.org.uk www.c-r-y website

If you know of anyone who is interested in running please ask them to contact the CRY office.

If you would love to run, and are happy to be in costume, but do not feel you can be tied into the £1250 pledge, please call me to apply for a “concessionary” heart costume place.

One area that must be stressed is - it will only be possible to ringfence marathon monies that exceed the pledge. I.e, if your runner were to take a Golden Bond place and raise £1,500, £250 will be able to be ringfenced for your specified project. Please make sure we are aware of any upcoming project you plan to ringfence.

Please call me if there is anything you are unsure about in regard to the Marathon.

Gift Aid Please try to help us make your fundraising efforts go further. If you are going to hold a fundraising event please contact the CRY office for new sponsor forms with a gift aid column. If you would like to download our most updated sponsorship form it can be found on the website under www.c-r-y.org.uk/sponsorshipforms. This is a generic form that can be adapted for your purposes. Please ask all sponsors to give a full accurate address, to sign the form, and to tick the gift aid box. All three of these are needed for CRY to be able to claim the extra ‘Gift Aid’ of 28p on every pound. At some events it may not be possible to claim in this way, however, if any sponsor is willing to sign up to Gift Aid a single form can also be downloaded off www.c-r-y.org.uk/giftaid.

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

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Cardiac Risk in the Young All Party Parliamentary Group

"The reason I am here today is because I got involved in this worthy issue from a personal perspective through my constituents Jeff and Sandra Morland whose son died suddenly. Jeff has long been a good friend of mind when I was a trade union official before becoming an MP. Alison Cox had a Parliamentary Reception earlier this year when I met Julian Lewis, the MP for New Forest East, who had also been involved with Alison. Julian and I got together to try and take the awareness campaign on to Parliament and to form an All Party Group and that is why we are here today.

I am very pleased that Ian Botham has joined us to launch the Parliamentary Group. It is very much about awareness and making sure that we raise issues that need to be raised about CRY in Parliament but also try and have the more general awareness campaign amongst the general public."

Julian Lewis (Conservative) MP for New Forest East and Vice Chairman said "Like Kevan I was drawn into this as a result of a constituent coming to see me. He had lost his wife in her late twenties. She had been as fit as a flea, having had no indication there was anything wrong with her and then suddenly he was widowed. As he said if only they had known what the possibilities were they would have planned their lives differently and not postponed some of the things they had postponed, thinking they had all the time in the world. So it is not always sufficient to say we can take pre-emptive steps so that a disaster won't happen. Even if a condition is such that the outcome cannot be changed people are entitled to the knowledge of what they might face so that they can plan their lives accordingly. I commend the work of Alison and am delighted that Kevan has taken on the main burden of being willing to start up and administer the Group and I am very happy to give my measure of support on behalf of my party."

Ian Botham OBE launched the group and said “Ladies and gentlemen, Julian and Kevan. I was asked to get involved with this a little while back, by an old school friend of mine, down at Yeovil. It was in the aftermath of a tragedy - a 7-year-old girl had died at the swimming pool there. Her father saw what happened; otherwise it would have gone down as another drowning. Another young lad I knew, Wilf Slack, fit and healthy, played for England; we were told had epilepsy, and the next moment he had fallen down dead. The other evening I was out having dinner with my wife, Cathy, and bumped into Terry Yorath who I have not seen in a long while now. What happened to his son is well documented. And it goes on. This morning I rang home and my wife informed me that a post mortem is going on in the North East on a young healthy sporty teenager who had fallen over and died. So it is happening a lot more than we realise.

Coming from a sporting background rather than an academic background and having 3 grand children, and two daughters and a son - a son who is a professional rugby player which is probably the most physically demanding sport there is - I would, for one, like to think there is a situation not too far away where we have, like breast cancer units, units going round to schools and clubs. At the end of the day these should be available. It is available in America. You cannot play sport in America without being screened, or in Italy and I believe it is now happening in Australia. I believe it is something that should be done here in this country. It is no good saying afterwards "well this is what we should have done". I would like to see CRY try and build up prevention. That is what it is all about to me.

I know it would be Alison's dream to have these scanning machines or monitoring units going around the schools and the colleges, and even the professional clubs. At the end of the day it can happen to anyone - in yourteens, in your early 20's or 30's. It doesn't matter. It is indiscriminate. It affects all sorts of people. Amateur sportsmen, professional sportsmen, guys playing on a pitch, dad walking the dog, and the kid at a school sports day. It can affect anyone with children. It has been swept under the carpet for too long. There have been too many excuses over the years.

I think it needs to be addressed and I am speaking not only as a sportsman but as a parent and grandparent. That is all I wanted to say on the subject because you can sit around and talk about these things forever but I think it really needs action rather than a lot of gossip.

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My London Marathon

By Cheryl Seamen My twin sister Paula and I were very keen runners when we were younger, competing at school events and then with our club the Worthing Harriers. I ran the 800m and the 1500m when I was younger and moved on to the 400m hurdles when I was a senior competing at county level. I had always said that one day I would run the London Marathon and watched in awe every year at the people who had already taken up the challenge. I never thought for one moment however that I would be running it under such emotional circumstances.

I decided to run for CRY after my younger brother Ben died from Sudden Adult Death Syndrome in September 2001 just days after I was married.

Paula found out about the charity on the web and entered and when she first told me I was ready to offer my support in helping her to train, but then one night I thought I can't let Paula go this alone. We've always done everything together so I got my charity place in January and started to train.

It was long and hard. I had never run this far before. The training left me tired and sore and it always seemed to rain when I went out on those dark cold nights!

Everything seemed to be going to plan when I came down with a mystery virus with less than a month to go. I was on antibiotics and couldn't eat properly, I lost 10lbs and felt awful. Everybody tried to talk me out of running and I had my doubts too but we had raised so much through sponsor money that I felt I couldn't let people down.

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Then before we knew it we were on our way with the other CRY runners to the start.

I was very nervous now as even the walk up the hill to the start seemed to leave me breathless but I told myself it was just because we were having to carry all our bags and the costumes.

We lined up and everyone was really chatting with nervous excitement and the gun went off and everybody cheered. We slowly edged our way to the start and some people were even breaking into a jog but I refused to run any further than necessary and we found ourselves very near the back of the whole race! Finally after 20 minutes we went through the line and cheered we had started!

I jogged the first mile slowly trying to take everything in and it seemed to come really quickly and we all cheered as we went through, I thought this is going to be exhausting if we have to get this excited at every mile, when Paula turned to me and said that was a 12 minute mile, too slow and did I mind if she went off without me. This was a scary thought but I didn't want to hold her back, she was much fitter than me and wanted to run a decent time. I just wanted to get round in one piece so off she went. My race plan was to start slow and get slower!

The first time I saw my family was at the Cutty Sark and it was very emotional. I wasn't expecting them here because we knew it would be busy so it was really great. I went over and hugged and kissed them, they were all crying and cheering me on and I thought I must look terrible so I kept saying I was alright just slow. I asked about Paula as well because she was too far ahead for me to see now. They said they would try and see me again before the end and I said “yes please; because i might not make it to the end!�

Finally I said my goodbyes to my husband Kevin and daughter Jasmine and climbed on a train on Saturday morning with Paula and our huge red smiling hearts. We travelled to London and people didn't stop asking us about the hearts and wishing I carried on jogging and walking and drinking us good luck and complete strangers saying lots and also using the loo lots which I thought they'd look out for us on the TV. must be a good sign. I walked up the hills and jogged down them and if I felt like I needed a bit We booked into the hotel and registered and tried of support I ran along the edge of the road to relax but I was so tired from my illness that i where lots of children were holding their hands went to bed early only to lie awake for hours wor- out to slap, or giving out sweets. The crowds rying. The morning arrived and we went down to were great cheering me along at this stage and breakfast and forced ourselves to eat something. calling out my name although I was called an

My London Marathon

By Cheryl Seamen apple, cherry and a tomato instead of a heart which I kept correcting until I found it too tiring and just smiled or waved back.

When I hit about 12 miles I thought well this is the furthest I have ever run and everything from here is a bonus. The pace was very slow by now and my legs were very sore so I walked much more and only jogged when I felt I could, which wasn't very often. It was at this stage that I realised just how much training you really need to do to run the marathon and I was beginning to have my doubts about finishing at all.

In fact I told myself at about 15 miles that I would drop out at the very next first aid station and say how sorry I was to everyone but I just couldn't do it. It was just too painful. Then at 18 miles I saw all my family again! They were cheering me on and saying how I looked so fresh so I didn't have the heart to tell them all about how I didn't want to go on. My dad walked along beside me and offered to walk the rest of the way with me but i said I'd be ok and that I’d see them all at the end.

It was very emotional and I had to fight back the tears, I just didn't have the energy to cry right now.

The next mile was the longest of the whole race and the pain was almost unbearable but I kept telling myself that this was nothing compared to the pain of losing Ben and I had to finish this for him and for CRY. When I got to 20 miles I said to myself it's all downhill from now on. I started counting down the miles to the end that i n e v e r thought i'd see. I walked with two other people and joined in with their moaning about aches and pains, then I stopped for a massage.

The guy who did it for me promised that he would get me to the end with no more Cheryl’s s ister P aula i n h er pain. He lied! heart c ostume

As I made my way along the last 3 miles the crowds cheered us on but some of them were so encouraging that I realised how awful i must have looked by now. I was also now having to walk on the pavements going up and down the kerbs because the roads had b e e n reopened to the traffic, it made it even harder on my legs. I was also fighting my way through the crowds of people who had seen their family and friends finish already and were now going home! Some of them were amazed that I was still going, it had taken me so long and a photographer stepped out and took a photo of me and asked me if I was the very last person! I started to panic then thinking that all the officials would have gone home and I wouldn't even get my chance to cross the line and kiss my medal as it was placed around my neck. It didn't speed me up though I was just stuck at this pace now but even more determined to finish.

As the last 300m or so stretched in front of me i saw my family again. My husband hopped over the barrier and walked the rest of the way in with me trying to encourage me to break into a run but I couldn't, my legs were too sore and I didn't want to risk collapsing altogether and not finishing. Then finally I could see the finish line and just kept going straight ahead. I crossed the line and found that i was too tired to be emotional now, I just felt bad that my family had waited so long for me. I grabbed a sandwich and forced my self to eat, after all it had been nearly 7 hours since I started.I took it all very easy walking back to the tube station stopping and resting but I wouldn't sit down because I knew I couldn't get up again. When we all finally got home I sat in the bath and hoped my legs would feel better the next day but they didn't. In fact I couldn't walk for a few days but now I'm fully recovered and i'll always remember my marathon day and the mixture of emotions I felt when I completed it.

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Who’s made a house out of one of the CRY heart costumes ?.............

IT'S ONLY THE STORM "What's that creature that rattles the roof?"

"Hush, it's only the storm."

"What's blowing the tiles and the branches off?"

"Hush, it's only the storm."

"What's riding the sky like a wild white horse, Flashing its teeth and stamping its hooves?"

"Hush, my dear, its only the storm, Racing the darkness till it catches the dawn.

Hush, my dear, it's only the storm, When you wake in the morning, it will be gone".

by David Greygoose

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W I N D Y M H T W J

C H E B R I D E S Q

O Z K F S L I U E F

G R O N H Y N S A V

A T L A N T I C L R

E Q E S C M J F R E

L C W P A L X E W N

I R I V N T M R P R

C X S I H A R R I S

S B T O U Y G Y J D

WORDSEARCH Can you find these words?

HEBRIDES ISLE SEA LEWIS GAELIC HARRIS FERRY ATLANTIC WINDY

Julie’s Interview with George Moody Volunteer Screening Administrator for the Western Isles ECG Testing Pilot Study How did you find out about CRY? I was a Head Teacher in a 100 pupil school in Bayble in the Isle of Lewis. During the Easter Holidays in 1997, I was told that one of my teachers had died in her sleep. Joanne Fotheringham had been with us for 18 months and taught 24 Primary 4 and 5 pupils. We were all devastated by the news. She was so well liked and respected in the community that we raised money for the pupils to build a memorial garden to her. This was when I got to know Mrs Alex and Mr Fraser Fotheringham very well. They wanted to save other parents going through the same traumatic experience that they had had. They wanted to screen all the teenagers in the Western Isles and in Western Ross-shire where Joanne was born and brought up. Mrs Fotheringham had informal discussions starting in March 1999 with Health Officials and in January 2000 CRY put in a formal application to the Highland Health Board and to the Western Isles Health Board for approval to carry out an ECG survey of teenagers in the 15 - 18 age range.

Why do you want to help CRY? It was at this stage that I got involved with CRY as most people in England really have no idea what the Western Isles looks like. There are 5 main Islands and the total population is about 25,000 people. Most people stay in the Isle of Lewis which has two schools catering for 15 - 18 year olds as well as a Further Education College.

To drive from the Isle of Barra in the South to the north end of Lewis will take you 6 hours driving and 2 one hour ferry journeys. CRY originally hoped to do all teenagers in all the Islands but when Mrs Alison Cox came to Stornoway in October 2001, she soon realised that we would have to restrict ourselves to Lewis to begin with.

What is your job for CRY? It was during this visit that I agreed to do all the administration for CRY on the island.

How long have you been helping CRY? We hoped to start screening in mid-April in 2002. This suited me very well as I am 65 this year and would have to retire from my teaching post at Easter time.

Could you please explain the ethical approval in the Western Isles?

It is CRY's policy to work in conjunction with Medical Authorities when dealing with ECG screenings. There are 19 different General Practitioners in Lewis as well as the Doctors in the main Western Isles Hospital. All these people had to agree with the project. The Local Research Ethics Committee have to give their approval before any medical research project can go ahead. This took from January 2000 to January 2001 before they were happy with the answers given to all the questions they raised.

How many students have been tested in the Western Isles so far?

I distributed 716 invitations to teenagers of which 315 accepted. Due to various circumstances some could not come during the period of the screening with the result that 289 ECG printouts were sent to St George's Hospital in London for review. 22 people were recalled for further testing which was much higher than anticipated. Dr Sharma has arranged for four to have further testing done by Dr Vishu at the Western Isles Hospital while one will have to go to a mainland hospital for treatment.

‘Currently we are trying to raise enough funding to carry out a screening in the other islands, to do a further one in Lewis and to do one in Ullapool. I am very hopeful that all of these will take place.’

What are your hopes for CRY in the Western Isles in the near future?

Currently we are trying to raise enough funding to carry out a screening in the other islands, to do a further one in Lewis and to do one in Ullapool. I am very hopeful that all of these will take place.

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In memory of Laura Moss The members of WOW (Weymouth Operatic Workshop), a youth Musical Theatre group donated £300 to the Laura Moss Fund. A bucket collection was taken at the end of each performance of ‘West Side Story’ produced recently by the group at the Weymouth Pavillion Theatre.

Pam Spender attended Tonyrefail Junior School and received a cheque in the sum of £400 drawn in favour of CRY.

In memory of Christopher Rennard

West Leeds High School collected £350 in memory of Christopher Rennard

Mrs Frances Presley arranged a visit to the Wimbledon Tennis Championships for some pupils at the Blosson House School. After a fantastic day a donation of £250 was made to CRY. In memory of Jamie Bucknell

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Laura

Loren Grosvenor had a non-uniform day at Lakeside County Primary School in York in honour of Jamie and managed to raise £194. She organised it to coincide with Jamie’s birthday and was very proud that all the children took part in the event.

Her Head Teacher, Mrs Latham, thought it was a brilliant idea and allowed Loren to go ahead with it.

The Halfway Houses Primary School collected £200 at their performances by the children of Snow White.

Miss C I Lush, the form tutor of 9E sent in a cheque for £68 after her year group at The EMMBROOK SCHOOL in Wokingham, Berkshire raised some money by selling badges.

Our Fundraisers

In memory of Kevin Sayer Evy Sayer held a refreshment stop on the BERGH-APTON SCULPTURE TRAIL, held earlier on this year, and raised an incredible £1585 for Kevin’s Memorial Fund. ‘I have never cooked so many cakes, sausage rolls and cornish pasties in my life’, she

said.

This was the third biennial Trail held in South Norfolk and named Kairos after the youngest son of Zeus: the god of opportunity, and of personal time.

In memory of Leon Manners Julie Hatton forwarded a cheque for £222, £200 of this was raised by raffling a Boro football shirt that was kindly donated by Mr Michael Greenup.

Halliburton KBR Production services is an engineering and construction company to the oil and gas petrochemical industry, providing most of the oil and gas companies currently operating in the North Sea. With safety being paramount they introduced a ‘safety incentive’ scheme in which, at the end of each month, members of the offshore construction crew are given an amount of money to donate to their chosen charities.

In July, the committee decided that Leon Manners ‘Screening Fund’ should receive a cheque for £1000.

The Beacon Public House held a casino charity night in memory of Leon and raised £115.

Tees Valley Leisure in Middlesborough gave a great raffle prize of a year’s membership for their gym. This was valued at £145 and managed to raise £252 through the sale of raffle tickets.

Not forgeting all the pennies from the Collection Boxes!!!

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Our Fundraisers

The Conset Theatre Workshop Junior Group in County Durham presented ‘The Melody Lingers On’ , The producer, Margaret Darroch, made a donation to CRY of £300 through the sale of programmes.

Each programme had a CRY leaflet in it and over 500 were handed out on the night.

Maralyn and Kenny Bowen joined them on the evening and all thoroughly enjoyed the fantastic show.

This was the 10th birthday production and held at the local EMPIRE theatre for 3 nights. Next year’s show will be ‘Oh What a Lovely War’.

In memory of Patrick Keefe Following a Fun Day at the Shropshire Lad Pub, Lyne Keefe send in £380 in memory of her brother Patrick.

Prior to this year’s Wimbledon Championships, Julian Cox, raffled his pair of Centre Court tickets at the stockbrocking company Seymour Pierce Ellis and raised £780 for CRY. Last year Julian raffled his tickets and raised over £1000.

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In memory of Neil Wickers

Representatives of Elmham Surgery in Norfolk receiving the generous donation from CRY of an ECG machine. l to r Penny Loauch Nurse Practitioner, Dr Simon Hibberd and Dr Simon Carroll.’The machine is the pride of the place in the Nursing department and everyone says it is the best machine that we have!’

Blackburn and Darwen District of Freemasons awarded £400 to Neil Wickers Memorial Fund for Cardiac Risk in the Young

Our Fundraisers

The Weary Traveller Annual Bowling Tournament 2002 We were exceptionally lucky this year weather wise in glorious Worcestershire. The licensee's Kath &Eddie Robinson, Julia & Alan, the licensee's daughter & son in law were fantastic and with our son in law Tony Barker, the organizer, raised a tremendous £1050, easily beating our previous high of £700.

Catherine

Our thanks also go to Rob on the Bar- B-Que. Lorraine with the Raffle & all the helpers.

Mothers Benita Davies (Paul Davies 15), Diane Tolley (Robert Poyser 16) & widow Julie Chipperfield- Carr with dad Ken (Eamonn Chipperfield-Carr 34) came along to offer their support to Gill & myself along with our eldest granddaughter Catherine 9 The competion winners were Singles winner Pete Hopkins. Runner up Andy Lancett. Doubles winners Pete Hopkins & Andy Lancett & runners up John Head & Sam Davies. Trophy's donated by Mr. & Mrs. Gunn in memory of their son & step son Gary Astle 20 The winning balloon was found by Mary Jarass. Mary requested the £25 prize money went to a Heart Charity - well done CRY! The buyer of the balloon was Mrs Carol Lancett, mother of the winning bowls player.

Roy Ball

In memory of Christopher John Markham Mr and Mrs Markham sent in a cheque for £500 in memory of their son who died aged 30 of a heart attack.

In memory of Ian Bowen Last year a bike was donated and raffled by Maralyn and Kenny Bowen. The lady who won it re-donated it back to CRY. Paul Bowen heard of a local lad who had gone through several operations for a brain tumour, so he had a whip round at his work Campbell Machine Co. for the bike and donated it to the boy giving the £105 raised to his brother Ian’s Memorial Fund at CRY. The bike has now found a new home!

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Our Fundraisers

The North West Ward Liberal Club in Leeds held a charity night on 3rd July 2002. Ann Geldard, the Club Secretary, sent in a cheque for £600 which was raised on the night to help fund CRY’s research programme.

Dean Bowler had a place in this year’s London Marathon and wanted to run for CRY! He had run before, but found it hard to raise more than £400.

However, this year he was really chuffed to get over double his last effort raising a fantastic £850.

In memory of Suzanne Taylor Suzanne Taylor died 25th October 1999 of ARVC. Since then her friends and colleagues at the Royal Mail Chester have been incredibly supportive. Most recently they organised a charity cricket match which took place on Monday 3rd June - or almost took place. The same happened as last year - it was rain - stop - play!

Friends and supporters still turned up and all moved on to a nearby pub where a raffle was drawn forprizes which had mostly been donated by management. The event raised £355 in memory of Suzanne.

In memory of Levon Morland Various branches of the Amalgamated Engineering and Electrical Union (AEEU) have made further donations to Levon’s fund of £350. The Philips Durham and Washington Amicus AEEU Branches each donated £100 to Levon’s Fund.

On the 14th May Doreen Harley and Anne Wall visited the Rotary Club of Nestor to speak about the work of CRY. Anne had been in touch with them earlier to see if they would support her work in Nestor arising from the tragic loss of her son Craig. After the Club Council and Business Meeting they were unanimous in their praise of the joint presentation and in an expression of gratitude for the awareness they were given about Sudden Death Syndrome they agreed to donate £200 to CRY’s work, with a substantial portion of this going to Anne’s efforts in Nestor.

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Our Fundraisers

Louise O Brian sent in £105 raised in memory of Christopher Rennard at a charity football match at the Junction Pub in Beeston Leeds.

Patrick Fearon died sud-

A charity lunch held in the Parish of St. Clement Scarcroft Road, York raised £130 for CRY.

Amanda Cox denly in April at the age from Aberdeen of 22. He was a student did a paraat Reading University. chute jump for £346 was received in CRY and raised £110. donations at his funeral

to go to CRY.

Michael Jones completed a 20 mile charity walk for CRY and The Colchester School of Dance held their annual raised £200.

Dance School Ben Dunning, with the help of some Show’s raffle in friends, organised a Boat Party on the River Thames. £449.47 was raised from memory of a close friend who died a portion of the proceeds generated recently and raised from the ticket sales. Ben’s sister’s £114 for CRY boyfriend died of an undetected heart problem early this year.

Mary Abraham held Shiela Clarke held a tabletop a ‘strawbery tea’ Mrs Patricia Dean lost her sale at a sumday and raised an eldest son Michael on 23rd mer fair and incredible £118.90 raised £100 for May 1993 aged 22 years in memory of her CRY following a cardiac arrest.

After reading the CRY litera- son Philip ture she sent in a generous cheque of £100 saying ‘reading the stories of other readers was like readThere is a very small hamlet ing Michael’s story.’ near Darwen and when anyAndy Storey ran the London Marathon for David Staff and Neil Wickers Memorial Fund and raised £492. This was his first Marathon. He was struggling near the end until he was ‘picked’ up by a gaggle of CRY runners in hearts who helped him to the finish. He’s the odd one out in the photo on the website!

one gets married in the village the road is blocked off and the groom has to pay £10 to the Landlord at the Rock public house (to get her past the tractors that block the road. Many thanks to the landlord for giving his proceeds to CRY.

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In memory of Lewis Marsh

In September 2001, Sandie Vallance, a member of the Lewis Marsh Fund Team was diagnosed with breast cancer. She was operated on and then given both chemotherapy and radiotherapy. During the chemotherapy her hair began to fall out. She was advised to cut her hair short but decided to go the whole hog and have her hair shaved off. Her friends wanted to show their support for her immense courage over her illness and decided to sponsor her head shaving. And that is how she raised the £1165.

Sandie has continued to support and help with the fund even though she has been unwell and we all wish her a speedy recovery.

Robert Corby (left), a friend of Jill Marsh’s, also had all his hair cut off for the Fund. £994 was donated in memory of the father of Mr Giles and the wife of Mr Weston, both friends of Gill Marsh.

The Guildford School of Acting held their annual concert in memory of Lewis and as usual this was superbly presented and supported raising a wonderful £3,341 for Lewis’ Fund. As a result the final payment was made to secure the new CRY Acuson Cypress echocardioThe Guildford School of Acting annual concert gram machine in memin memory of Lewis ory of Lewis, which is housed at the CRY Centre for Sports Cardiology and cost £30,000.

Having our own portable echocardiogram machine will enable CRY's mobile screening programe to move forward to the next level. For the first time we have been able to take the ECHO onto an aeroplane which made it possible to do all echo tests for our Western Isles screening initiative on the island.

This saved everyone an immense amount of travel time and hugely helped CRY's screening team. Our very special thanks to Lewis' family and friends and of course to Sally Reid who has worked so hard to progress CRY's screening initiatives.

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The Cypress being used by John Pither and Dr Sam Firoozi at a CRY screening

In memory of Jamie Bucknell

On the 12th of November 2001 Jamie collapsed and died while in an English lesson at school.

After Jamie’s death had been announced his family received many letters and cards one of which was from Marjorie Scott informing them of the work carried out by CRY. Since then Jamie’s family and friends have been so supportive of CRY’s aims.

On July 13th 2002 Julie Lister (Jamie’s Auntie) and family held a ‘Family Music Evening’ not just to raise money but also for everyone to have a fun and enjoyable evening. ‘Believe me they all had a fantastic night, so much so that everyone on leaving asked when the next night was going to be!’ £500 was raised on the night. Julie’s husband is a musician and he arranged for the band to play along with a 16 year old local girl to sing with them. The local club gave them the ballroom free of charge and a local DJ also offered his services The incredibly generous ‘Bar Staff Lea Club’ made further donations of their tips on their ‘Family Fun Night’ Katy McClelland

DJ John who worked very hard

Just some of the party animals who wanted to have fun Band in the background with Brendan Needham the vocalist singing his heart out, he was very good.

The ‘Normandy Band Kings Division’ with special guest vocalist Katy McClelland and Second Image Discos were the guest band for the Family Fun Evening and raised a further £500.

Northern Lights

Their talent was fantastic and all who were there were eternally grateful for the support they were given.

Debbie Bucknell keeps sending in cheques for the ‘Fun Run’ collected by friends £592.50, £317.50, £286, £140, £400.30, £279....... Mark Lister raised £100. We hope people are not still running!

After the great support of her local pub ‘The Ship Inn’ Debbie sent in a further £162 from a Collection Box, as well as many other collections in her area including the local post office in Strensall.

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The stage with many balloons Each table had a balloon on and one of CRY’s leaflets

Paul Boyne recently sent in one cheque for £350 as well as a

Louise (left), Jamies cousin, dancing the night away

Jean, Jamie’s Nana, who helped get the room ready Some of the more adventureous dads wanting to have fun.

Move over Village People

In memory of Jeremy Cole

Our local newspaper ‘The Eastbourne Herald’ held a special charity Jubilee Concert on June 2nd at the Congress Theatre, Eastbourne with ‘CRY’ being one of the nominated local charities to benefit directly from the proceeds.

The concert included performances by many youth and other organisations in the Eastbourne area. We were able to both place and man a large ‘CRY’ information stand in a prominent position in the entrance foyer as well as getting coverage in the concert’s souvenir programme.

It was a very lively and well supoprted evening held during the ‘Jubilee’ week-end and as one of the beneficiaries we received a cheque for £1000 towards our fundraising in memory of our son Jeremy who died suddenly from ARVC in 1995.

We have already managed to fund two ‘CRY ECGs both in the local hospital and in a local doctor’s surgery and are now fundraising towards supplying a ‘defibrillator’ for use within the same GP practice Jenny Cole

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Mobile Screening in memory of David Staff and Neil Wickers On the 8th and 9th of June, the CRY van headed up to Darwen for a mobile screening in memory of David Staff and Neil Wickers . We were delighted that Sanjay was able to attend, and made sure we treated him appropriately with Kit Kats! The venue was fantastic at the Darwen Access Point Employment,Training and Careers Advice, and we even had a guest appearance from Kenny in a Heart (he always dresses like that!). The screening was held on the Saturday, with two echo technicians Dave Oxborough and Mike Morre, with Adelle taking ECG’s. Having two echos helped us to keep Sanjay busy, and everyone on their toes! Many thanks to all who volunteered on the day including Alex, the access point caretaker who was so helpful in setting up, Brenda Poole, Jaqueline and John Squelch, Doreen Wickers, Marie Yates, Patricia Rutter, Kathleen Taylor, and Angela Wilson and of course Bill & Ireene Wickers and Granville & Susan Staff in setting up the event.

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BULLETIN BOARD

MOBILE PHONES

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.

- Recycle and donate to CRY

CRY is currently looking for teams of eight people to take part in this nation wide Team Challenge which is taking place at We now raise money by recypurpose-built Outward Bound centres set in idyllic locations across the UK. cling old mobile phones. If you

are in contact with a company

Teams take on a variety of mental and physical challenges over a two-day who is replacing their mobile period which is designed to promote teamwork within an enjoyable outdoors phones, or simply have access environment in the Lake district, North Wales or the Scottish Highlands.

to a large number (more than No previous experience is needed as all training is provided and if your team 10), please contact the office raises the minimum sponsorship level of £2,800 for CRY then all your team and we will help you dispose of them while benefiting CRY. members get to take part for free!

(Phones should include batteries If you would like more information please contact the office. and chargers)

B

L

A

Z

E

Blaze is an organisation best known for their Firewalking Experience. If you are interested in something completely different- like learning how to walk barefoot across broken glass, experience being a fall guy or bodyguard or ‘simply’? surviving the call of the wild for 5 days and nights - you may finally have found the place to be. For more information on these events either contact the office or go to their website www.blazefirewalking.com. There are a number of different events on offer to those who are wishing to fundraise for CRY.

Give as You Earn Before you embark on any commitment to project funding please call JAN SMITH If you make regular donations to for details of forms required to regulate CRY you may be interested in this. This should be a great timesaver, donating through your payroll. This you to make a pre tax as you need to check your information is enables donation with a 10% bonus added correct before proceeding. The definitive by the government if made through guide to CRY projects for ring fenced ‘Give as you Earn’ funding is now available from Jan.

Are you interestead in running this years London Marathon? Please contact Steve in the CRY office for how to apply.

E MAIL CONTACTS

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CRY head office - cry@c-r-y.org.uk Keeley Ashley - keeley@silentwhistle.co.uk Roy & Gill Ball - royandgillball@selcroftavenue.freeserve.co.uk Nigel & Jenny Cole - nigel1949@hotmail.com Jo & Charlie Cross - chascross@compuserve.com Caroline Gard - carolinegard@hotmail.com Alan & Gloria Moss - mosses@exite.co.uk Tim & Sylvia Salisbury - thesalisburys@cwctv.net Granville Staff (work) - granville.staff@darwen.deconorth.com Jan Smith - jsmith@sghms.ac.uk Adrian Woodhead - adrian@woodhead88.freeserve.co.uk Doreen Harley - doreen@harley1948.fsnet.co.uk Sally Reid - sally.reid@virgin.net

More and more people are using email as a fast and convenient way of communication.

If you would like to be put on our CRY list, please email us with your details.

BULLETIN BOARD

Last month our volunteer family co-ordinaPlease remember that unless you notify us tor Pat Ure broke her hip bone while out and get the necessary documentation and confirmation playing cricket. Although she is recovering from the office for “ring fenced” fundraising before you start a fundraising venture, all well, this will mean funds raised will be used for CRY Core there is a delay in Funding. Retrospective “ring fencing” is unfortunately just not possible. CRY cannot thank you letters be responsible for any “ring fenced” fundraising unless it has been authorised. being sent out. If you “Ring fenced” fundraising is for specific proj- would like to send her ects only. After the successful conclusion of a card please send it the authorised project, fundraising will be to the CRY office and directed again to CRY Core Funding.

Because of the appeal of certain projects, we will forward it on some will have a waiting list Pat with a Marine at the to her.

CRY Commando Challenge RING FENCED FUNDRAISING

Christmas Cards We are 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.

If you would like to go to the Please give me a upcoming SADS conference hosted call or email me if

by SADS UK on October 12/13th you have any sugplease apply to the CRY office for gestions on how you further information would like the conWould you like laminated colour copies of any of the pages in the brochure? Please contact the office, stating tent of your future quantity and which page. fundraising pages to If you would like CRY to consider any item for Bulletin Board please fax be laid out . details (including your item) through to Steve on 01737 363444

Please bear in mind when organising fundraisings that it would be great if you could take photos of your great day.

It would also be extremely useful if, when you write in to the office, that you clearly state how much was raised, and by whom.

Best wishes Steve Cox

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