CRY Update Magazine - Issue 25

BI-MONTHLY UPDATE News, Views & Do’s -

♥ Meet our Representatives ♥ Newsletter ♥ Kids for CRY ♥♥♥♥♥♥♥ Julie’s Interview ♥ Jokes Corner ♥ Puzzles ♥ Jan`s Report ♥ Mike`s Report ♥ Our Fundraisers ♥ Raising Awareness ♥ Bulletin Board

CARDIAC RISK in the YOUNG Issue No. 25 May / June 2000 CRY SUBSCRIPTION AND / OR DONATION FORM Name...............................................................................................

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MEET OUR REPRESENTATIVES IN SUFFOLK - IT`S KATE & ROBI FOX We live in the small Riverside Town of Woodbridge in Suffolk. We have lived here for 15 years and until August 1998 we were a normal happy Family. Sam, our eldest daughter was 15 and twins Mark, and Laura, were 13.

We had just returned from a hastily arranged French Holiday, which had turned out to be one of the happiest and most relaxing holidays that we have had. We were at home when we decided to go and play tennis, so Mark and Laura had gone to get ready.

Mark found Laura lying on her bed. We tried to revive her, and the Ambulance Paramedics worked relentlessly for what felt like hours, but they weren't able to bring her back.

Her death has had a devastating effect on the whole family and we are still trying to come to terms with the fact that she has gone.

Laura had always been very fit and healthy, finding physical sports came easy to her. From her first year at school she had won running races, in fact she had won the 100m and triple jump at her school sports day just the month before her death.

Parents bring up their children teaching them what is dangerous and what is safe. You never expect that your perfectly healthy child will simply lay on their bed and die for no apparent reason.

The initial post mortem could not establish the cause of death. After extensive tests lasting an agonising 5 weeks, the final Coroner`s verdict was "probably aspiration of vomit as the result of an epileptic fit".

For lots of reasons we were convinced that this could not be the case, but at the time our grief was such that we accepted it, as opposed to an "Open verdict". We had never heard of SDS, or the research being carried out at St George`s.

About 2 months after Laura's death we were approached to take part in research with St George`s, which resulted in our meeting with Professor McKenna. He confirmed that Laura almost certainly died as a result of Long QT Syndrome.

We were put in touch with CRY and the overwhelming sense of relief and comfort we took from finding people who understood, cannot be put into words. This was tinged with sadness that there were so many other people suffering in the same way as our family. We don't know what we would have done without their support.

Our aim with CRY is to raise awareness of the conditions associated with SDS and provide parents with the option of having their children screened. In this way we may just be able to prevent one other family from suffering the interminable grief that we have felt at losing a child.

NEWSLETTER May / June 2000 CRY celebrated its 5th Birthday on May 3rd - and it is perhaps appropriate for us to take a moment to reflect and acknowledge what an amazing amount has been accomplished in this time and what an incredible 5 years it has been!

We have to date raised the astonishing total of ÂŁ878,950 with which we have; purchased the Echocardiogram machine in use at St George's; purchased 21 ECG machines for use in local communities (in the last 2 years Marquette have sold more machines to CRY than any other purchaser!); introduced the first ever proactive ECG testing programmes into local communities in the UK; purchased a mobile cardiac screening van and introduced the first ever mobile cardiac screenings into local communities in the UK; designed a CRY Counselling Course to train our staff and families who have suffered a tragedy to be able to help others cope. It is sobering to remember that we have managed all this without a penny from Government who have again turned down our annual application for Section 64 Grant funding.

In the last 2 months CRY ECG machines have been ordered by the Scotts in Beadlam in memory of Mike; the Jolly's have funded two ECG machines in the town of Brentwood in memory of Ashley; and the Cole`s their second ECG machine, in memory of Jeremy, into their GP surgery for the benefit of the community of Eastbourne.

Through the intervention of John Jolly we have also been donated 10 excellent computers by John`s employer, Ford, which will be used to help network our Divisional Representatives and furnish them with their own PC's.

In June Caroline Gard (Andy Gard Memorial Fund) and Sally Reid (Lewis Marsh Memorial Fund) launched CRY`s first ECG Community Testing Programmes in their respective counties of Essex and Berkshire. We have also done 2 more Mobile Cardiac Screenings with our indefatigable Field Captain Harry Hindle superbly organising sessions in Durham in memory of Sarah Woodhead, Steven Lamb and David Cross, supported by Jo Cross and Kevin Alder and their team - and in Preston in memory of David Staff and Neil Wickers supported by the Wickers and Staff families and friends.

CRY can now boast another supporter in a high place with Maureen Ward, our Divisional Representative for Wales, being made Mayor of Tenby for an unprecedented 4th time! I was privileged to be invited for the "making" ceremony which was very Welsh and very special!

Congratulations Maureen and more power to your elbow for CRY - you will be able to glide over all the last hiccups of your ethical approval problems by pulling rank now!

Our last Counselling Training weekend was the toughest yet with a move forward from basic counselling skills into the confrontation of grief and a lot of difficult and challenging introspection making for some gruelling moments. Because the course is residential the friendship and support generated make it very special, and I hope all students feel as I do, how very worthwhile the experience is. I would like to take this opportunity of again thanking our Chairman Dr Greg Whyte for organising the lecture room at the University of Wolverhampton for us, which has mitigated our expenses and greatly facilitated travelling arrangements.

Information for applicants for next year`s course will be available after September 1st. Places will be limited to 20 students. Please send an SAE to the office for details.

So with a list of achievements of which we can be truly proud, CRY now moves forward into the millennium to confront our most ambitious proposal yet the instigation of our Sports Cardiology Unit in conjunction with St George's Hospital. This is a crucial project which will not only raise CRY's profile and projection of services we offer, but most importantly provide the anchor for the development of our cardiac screening programme and all research initiatives.

JULIE`S INTERVIEW WITH

Frances Presley CRY`s Wimbledon Funday Co ordinator Julie

How did you first hear about CRY?

Frances

Through Alison's very early contributions to 'Surrey Tennis' magazine to make people aware of the, hitherto, unknown dangers of Sudden Death Syndrome.

Julie

How have you been involved with CRY?

Frances

Helping to organise the Wimbledon 'FUN' day and also through my husband being the first Chairman of CRY.

Julie

Frances

Alison always says that her aim is not to be How long have in existence because that will mean that the you been Charity will have achieved its aims of making involved with everyone, including the medical profession, aware CRY? of the necessity for screening.

About 8 years.

Julie

Have you done any fund raising for CRY?

Frances

Yes, with the Wimbledon 'FUN' day.

Julie

What is the Wimbledon Funday?

Frances

The 'FUN' day came about because our local Short Tennis Club saw the original Skipathon information and decided to take part.

It involved the participants finding sponsors, and as our club members are 5 - 9 years old and we were holding the event in December Mums did not take too kindly at that time of year to finding sponsors. The event was a great disappointment.

When talking about it later we decided to get the children to raise

money by playing short tennis themselves. One of our helpers suggested asking the All England Lawn Tennis Club if we could use the indoor courts one morning. The Club kindly agreed and the event grew from that. We ask children to come for two hours to play 'fun' short tennis, tennis, ball activities and skip. To close the session there is a display of skipping by a local school.

Julie Frances Julie

What ages can children come along to the Funday?

4 - 12 years.

What date is the Funday?

Frances

Usually the Friday after Easter, but it is rather dependent when Easter is and how it coincides, or not, with the school holidays.

This year was very difficult as Easter was so late.

Julie

How much money has been raised by the Wimbledon Funday?

Frances

Nearly ÂŁ10,000.

Julie

What do you think CRY could be in the future?

Frances

Alison always says that her aim is not to be in existence because that will mean that the Charity will have achieved its aims of making everyone, including the medical profession, aware of the necessity for screening. I totally agree with that. That is in the long term. In the short term CRY should, not could, be the catalyst to raise awareness in as many places as possible.

Theme - Tennis

Photo-Call wHAT`S THIS LITTLE CHAP UP TO? ... ...... . . . . . . .!

CRAIG RAMPTON MEMORIAL FUND Joy Powell has been extremely busy organising fundraisings and giving talks about CRY to schools. Pupils from Barbourne Prep School (where Joy used to work) held a Christmas Bazaar and raised a wonderful £100.00. Beth & Jamie (holding the cheques) stood on a street corner during Victorian Week and played their recorders raising a brilliant £28.00 in memory of Craig. They are seen here presenting the cheques to Joy.

IN MEMORY OF DAVID CHAPMAN The Wensleydale School (David`s old School) have been busy for CRY. A memorial service was held in memory of David where colleagues talked about him and his favourite music was listened to. A non uniform day was also organised raising a fantastic £225.67, and a group of post-16 students planned a computer competition for the pupils of the school and raised a brilliant £16.14 making a wonderful total of £241.81 for The David Chapman Memorial Fund

WORDSEARCH

can you find these words?

JAN SMITH CRY`S ADMINISTRATOR REPORTS FROM CARDIOLOGICAL SCIENCES ST GEORGES HOSPITAL MEDICAL SCHOOL Hello again from St George's. The production of the Brochure is always a good marker for me in terms of time passing, and it has been a busy 2 months in the Hospital.

In the last 2 months, (in brief) CRY has had two mobile screenings and two ECG testing sessions. Through the fundraising efforts of three families (the Scott's, the Jolly's and the Cole's) three more ECG machines have been placed into medical units and surgeries. We've also made progress with Sports Cardiology and a presentation on the way forward is about to be given to our Trustee Board depending on the print run, it might just have finished when you receive this!

Echo - As you might be aware, CRY provided St George's with the permanent loan of an ECHO machine a number of years ago. I am pleased to inform you that the ECHO received a major software upgrade in May of this year, bringing it back up to speed. The upgrade was made possible by the Hospital funds, quite an achievement in the current financial climate. Harry Hindle, CRY's Field Officer inspected the ECHO and has given a big "thumbs-up" to the end result.

Finances - I thought it might help to confirm arrangements regarding the financial guidelines for memorial funds. If any family chooses to link in with CRY, funding raised in memory of a child under the banner of CRY should be forwarded to the Head Office on a regular basis. The money will be placed into a Restricted Fund (ring-fenced) if requested, and used as directed by the family / CRY contact, with 25% being deducted to support core funding. Any sum of money received by CRY can be ring fenced for CRY`s screening programme. Of course, I feel I should stress that the greater majority of CRY contacts do forward money on a regular basis, but the Charity Commission is quite clear that individuals who link in with Charities should not retain separate accounts for fund raising purposes. It places both the Charity and the individual concerned in a vulnerable position and it is not possible for CRY to support such a system. CRY will offer ‘Ring Fenced’ funding for as long as it can realistically operate a growing number of accounts. The topic of forwarding payments is a common area of concern within charities and one which relies on the support of volunteers.

Facilities developed by CRY are made possible by your fund raising efforts - so please help us to keep up to speed with what you are doing. If you would like to discuss this issue in further detail, please call me.

The level and breadth of work generated by CRY is constantly developing, and anyone who feels they are receiving a slower response than they would like, please accept my apologies. We do draw up priority lists, but these are very often over taken by dealing with situations that need immediate attention. At St George's, our first responsibility is to ensure that any distressed family who contacts CRY receives proper attention and appropriate support, but it does mean that other work priorities then shift to accommodate unplanned work. It's always a challenging area, as many contacts will feel that their work is key too! From speaking with many of you, I also know that there is a common empathy for anyone coping with the sudden loss of a child and I hope you will understand that because of our remit, we cannot always respond to all parties as quickly as we would like.

Please feel free to call me at any time regarding our work here in the hospital on 020 8 725 5098.

For information, anyone writing in should use the full address which is: Jan Smith, CRY Administrator, c/o Cardiological Sciences, 2nd Floor, Jenner Wing, St George's Hospital Medical School, Cranmer Terrace, Tooting, London SW17 0RE. Thank you!

Kind regards from Jan.

MIKE FOSTER CRY`S PROJECTS MANAGER REPORTS 2000 LONDON MARATHON Income from this year's London Marathon is £17,306.41p so far, made up as follows: Donated place runners £7,001.83p Golden Bond runners £10,304.58p Five out of eleven donated place runners and 21 out of 30 Golden Bond runners have yet to make their remittances, which are due by the end of this month in order to feature in calculations for incentive prize awards. Official London Marathon Finishers watches are awarded to the top 5 male and top 5 female fundraisers. It is expected that the final amount raised will be in the region of £40,000.00p.

CRY COMMANDO CHALLENGE This year's Commando Challenge is scheduled for 7 October and the final date for applications is 31 August. However, if there has been in sufficient response by 31 July, the event will be cancelled. A videotape of last year's event is available at nominal cost from Central Office, so why not order one and see what it is all about for yourself. It is a great day out and if you would like to enter a team, get in touch with Central Office as soon as possible to avoid disappointment.

And Finally Following the relocation of CRY to the new offices in Tadworth and the subsequent rationalisation of resources, my formal position with CRY has become redundant and my employment with CRY will terminate at the end of July. I have enjoyed working with CRY and seeing it grow over the last few years and hope it will continue to thrive. My thanks to those of you that I have had contact with, for your help and sincerity. I wish you all well for the future.

Sincerely, Mike Foster

CONGRATULATIONS MAUREEN - MAYOR AGAIN FOR THE 4TH TIME! On a warm sunny day in April, 5 years ago, I was busy mowing the lawn, everything was great, and then in a matter of seconds my world fell apart. A stranger was standing there telling me my beloved son had 'dropped dead' in work. I won't go into what happened after as many of you will have been through the same horrific times. 12 months after I heard of CRY and Alison, I have to say she was a lifeline in those early days and she understood that I felt screening was so important. To me if I could save one young life Caradoc's death would not be in vain and that is when I started working with CRY. I know many of you are working hard out there and sometimes get disheartened when things don't go according to plan but remember ‘when you hit a brick wall there is always a crack to get through on to the next road’ so keep plodding on and at least we are making people aware of what's going on out there.

One day I am sure we will all have our wish and screening will be the normal routine done in every school in Britain.

As the mother of a SDS victim I will keep on raising awareness of this silent killer.

Maureen Ward.

611 Mayor of Tenby (recently made Mayor again for the 4th time)

RODGER WHITE HAS RAISED ÂŁ2,320.20 IN MEMORY OF DOMINIC O`LOUGHLIN This is about running a Marathon, but it is also about more important things. The worst thing that can happen for parents is that their child dies before them. Many of the people who read this will know the pain of that.

A few years ago I was told that Dominic, the son of friends of ours, had died suddenly after a cross-country run. To be honest I can't remember the medical term for the heart defect he had but, like many others, an apparently fit and healthy child had died prematurely and completely unexpectedly, because of a heart defect. I didn't really know him - I'd only seen him a couple of times - and yet I still think about him now, from time to time. I know that his parents think about him constantly.

It would be wrong to suggest that Dominic was my only reason for running the Marathon. I've always liked running, since Roger White seen here with running partner Les Gardner I was a kid, though there have been long periods when I haven't bothered to do any. But there is a difference between running - or 'jogging' as some people call it - and doing a Marathon. I've only done two Marathons - in London this year and the year before - but also a few half Marathons and 10 mile runs and so on.

Dominic was certainly a motivation. If you are going to do something painful like running a Marathon, then you might as well use it to get money out of people for something worthwhile. (It works like this - "Look! All you're doing is giving me ÂŁ5. I'm putting in blood, sweat and tears. Give me your money".) But there is another side to this - if you've committed yourself to raising money for CRY (or whatever the charitable concern is) it makes it more difficult to back out. And there will be times when you want to. Frankly, no-one in their right mind wants to be doing 5 or 10 mile 'training' runs when it's pouring down with rain and you could be in the warm at home. You will especially want to back out when you get to that cobbled bit just after 22 miles by the Tower of London.

On the other hand - just in case what I've said has put you off - there are actually some reasons in favour of doing Marathons.

1. You get a sense of achievement simply out of completing them.

2. You get fitter because of the training you have to do just to finish.

3. There is a simplicity about the process of running that allows you to switch off from the complications of the day.

4. There is a comradeship amongst runners, which is particularly apparent at Marathons.

People are very supportive. (I must stress that this does not include those who can run Marathons in less than 2½ hours - they're abnormal and probably not even human. And no - of course I'm not jealous!)

5. You can use Marathon running to raise money for CRY.

BY RUNNING IN THE 2000 FLORA LONDON MARATHON I was actually asked to write something about running the Marathon itself. I will say something about that, and then finish with some advice about preparing for the Marathon - which, I am confident, you will now want to do.

The main things to say about Marathons are: · It's a very long way (26.2 miles). As one of my colleagues put it "that's further than I could drive my car!" · Many people get caught up with the enthusiasm of it all and run too fast at the beginning.

Believe me, this is a bad idea. · You will get a great deal of support. Unfortunately, a lot of this comes from people in pubs, which is where you want to be. · At the bigger Marathons (like London) there are thousands of runners, so try not to get in each other's way. · In the London Marathon there is a loop in the route, which means you meet the really fast runners going the other way (fortunately on the other side of the road). They have 4 miles to go you've got 13. Very depressing. · You may find, during the run, that you are passed by someone wearing a rhino suit, or several people (running in step!) dressed as centipede. Try not to get cross about this.

Now for the advice about doing a Marathon: · If you think you can do a Marathon then you probably can. If you think you can't, you may still surprise yourself. · If you have any doubts about your level of health and fitness, or you have done no running or any other vigorous sport for several years, you should take medical advice before undertaking a Marathon. · You need to do a lot of training if you want to finish, and still be able to walk the following week. You also need to build up the length of your runs, and to vary the type and speed of running you do. Most sports shops and newsagents have running magazines with advice on this. If you are successful in an application for the London Marathon you will also get "Marathon News" which tells you about this. If you haven't run before, start slowly and gradually. Don't expect too much at first and build up to the final day. · If you're useless with money, like I am, secure the services of a fund raiser/accountant (in my case, my wife). · Get yourself some good running shoes. · Make sure you eat and drink properly. You need to take in a lot of fluid (not alcohol!), and plenty of carbohydrates (pasta, bread, potatoes). For the diet conscious, don't worry you're more likely to lose weight than gain it. If you smoke, try to stop, or at least reduce. · If you can, get a running partner. This is helpful to keep you motivated. Try to get someone a bit faster than you. Try not to hate them for it. Alongside this article is a photo of my running partner, Les and me. We look happy because we've just finished the Marathon.

The pain was already fading. Running the Marathon was for Dominic, and other children like him. But it was also for me.

A FANTASTIC £9493.60 HAS BEEN RAISED Ashley Jolly was a bright fit teenager who was found dead in bed aged 16. The official cause was noted as asthma - although he had never suffered an attack.

Since his death on 28.05.98 the Jolly family have tried to find the real reason behind their tragedy. After considerable research they are convinced he was a victim of Sudden Adult Death Syndrome. Their goal has been to raise enough money to buy an ECG Machine and test children of secondary school age for heart problems. With their team of helpers they have organised several fundraising events, and have persuaded Brentwood and Ongar M.P Eric Pickles to be on their side.

Ashley seen here at a Go-Karting event

A Barbeque was organised, it was held on a Ford of Britain Trust donated a brilliant £250.00 lovely warm September evening. The Jolly`s and in memory of Ashley their neighbours decorated the mews with fairylights and a CRY banner, so many people The Brentwood Fun Run had came along to support the event. Local companies good support in memory of were very supportive donating a Marquee, raffle Ashley with Denise, Nicola, prizes, including a basket of fruit from a local farm Hayley, Matt, Sandra, Philip and tickets for dinner at a chinese restaurant. The & John all completing the 3 evening was a great success and raised a mile course and raising a fantastic £523.00 in memory of Ashley. brilliant £473.50 Ashley`s grandmother was keen to Anne Jolly (Ashley`s Mum) works in the IT raise money for Ashley`s Fund and held department of Warley based firm a raffle at the Probus Club which she Cleanaway. Following a suggestion from her attended. The Jollys were all boss Michael Curran, IT staff organised a overwhelmed at the generosity of the sponsored windscreen wash in the firm`s members. They were concerned when car park. A super £299.00 was raised and a they read the CRY literature and further £100.00 was donated by the realised how conditions of the heart can company. Anne said “I was overwhelmed by affect apparently fit and healthy young the generosity of the staff” people and raised a super £213.00

8 participants from the Jolly Fund Raising team took part in the annual London to Brighton Bike Ride including John & Philip (Ashley`s Dad & Brother) pictured left; Also Sandra, Peter, Colin, Mark, Matt & Barry put lots of effort into their cycling, and even more into their Fund Raising. A fantastic £1020.10 was collected.

IN MEMORY OF ASHLEY JOLLY FORD MOTOR COMPANY DONATE 10 COMPUTERS IN MEMORY OF ASHLEY 'Anne's husband John Jolly works at The Research Centre of Fords at Dunton.

When Fords were in the process of updating their computers John made enquires to find out what was happening to the computers that were being replaced. John was aware from the CRY Brochure that they were in need of office equipment and wondered if they stood a chance of acquiring any of these computers. After making enquiries John found the relevant department who fortunately were able to help.

They requested a letter from CRY detailing their need for these machines and Alison promptly obliged. The wheels were in motion and fingers and toes were crossed that the application was successful.'

The CRY office received a call from Fords at 10.30am saying “you have been donated 10 computers but you must collect them by 5pm to-day to ensure you get them” By one o'clock Tony and I were ready to make the journey to South Ockenden in Essex. Having been given precise instructions through the Streets of London, we decided to take the 'stress free' route around the M25. We settled into a comfortable journey in the middle lane, but soon discovered our conversation had betrayed us and we were no longer on the M25, but the M20! We decided France could wait for another day, turned round, and headed back to business. Unfortunately, the rush hour seemed to have started early today and we promptly found ourselves virtually motionless. 2 o'clock, 2.30, 3 o'clock and still we had not even reached the Thames!

The rain came down harder, things were looking bleak, but at least we had plenty of time (we had been told the offices closed at 5 p.m.). We decided to check everything was going to plan the other end. Oh dear. Offices closed at 5 p.m., but security closed at 4 p.m., so no machinery clearance could be given after 4 p.m.. The race was on, but we weren't going anywhere fast, and every minute counted. As we came out from under the Thames, we were on track for 3.50 p.m. No problem - the directions were straight forward from here!! Unfortunately, the land marks did not seem to be adding up and although a couple of brief encounters assured us it was 'just round the corner', it clearly wasn't. Tony's mobile saved the day. I managed to hold the security guard on the phone and talk us in from about a mile away. The seconds were now counting, and we could not be sure if clearance could be given, or if we would have to make the same journey another day. We opened the door of Doc. 8 and pursued our contact Jenny. Within moments racks of computers were wheeled over to us, loaded onto the CRY van, a slip was signed and we were on our way home with an encouraging farewell message from the security guard, '10 of the last 15 computers to leave this place didn't work and were bought back'!

Mike Coleman (CRY`s IT specialist) was eager to see if they all worked (and so were we!) After a small upgrade he said ‘all 10 were excellent machines and we were very lucky to have them’. These machines will be so useful to CRY, to extend our network and to be able to share information more effectively. We are extremely grateful to Fords for their very generous offer, and to the Jolly`s for thinking of CRY.

THE LOYLEY`S CAMPAIGN Anna was truly unique. A bright, attractive, intelligent, sophisticated, 26 year old with her life before her, who was preparing for her imminent wedding .

This photo was taken of Anna as she was crossing the finish line in the 1998 Bath 1/2 Marathon. Radiant. Happy. Successful. Within minutes she was dead and at her inquest Professor McKenna reported that she was probably a victim of Long QT. There can be very few photos that so explicitly express the brutality of Sudden Death Syndrome as this one. One minute a beautiful young athlete, brilliantly alive, and then a life that is over.

The family buried Anna in her wedding dress.

Her bouquet was used for the wreath on her coffin. The wedding flowers used in the church for her funeral.

An exhausting six month investigation by Anna’s Dad Phil and Fiancee Nick, with the backing of some of the world`s leading medical experts, had tried to make sense of Anna`s death.

The mystery surrounding this led the family to join forces with CRY. At Anna`s inquest Phil called a Press Conference with CRY, when Granville Staff, Caroline Gard and Gloria Moss were invited to give their account of how Sudden Death Syndrome had affected their families.

Since Anna’s death Phil has been committed to campaigning to change the way medical assistance is deployed in this country at road races. Anna collapsed within 80 yards of a defibrillator which could have restarted her heart.

If Anna had collapsed at her next race in France instead of in England she would have had support at the finish line of a mobile hospital with a resuscitation unit identical to those that exist in hospitals and an emergency anaesthetist. Treatment in the case of cardiac arrest problems must be given within 3 minutes.

IN MEMORY OF ANNA We are immensely grateful to the Loyley family and their friends who have been supporting CRY’s raising awareness campaign and donated £11,217.20 in Anna`s memory and we look forward to hearing the final outcome of their work to change medical cover in road races which is now being considered for ratification at the highest level in the UK.

RUNNERS IN THE 1999 NATIONWIDE CITY OF BATH HALF MARATHON RAISED £1672.44 FOR THE ANNA LOYLEY MEMORIAL FUND

IN MEMORY OF MICHAEL JENNINGS AND PAUL BENT IN MEMORY OF MICHAEL JENNINGS

PAUL BENT MEMORIAL FUND

Michael`s family have made a wonderful donation of £300.00

Paul was a sports fanatic. He played squash, worked out at the gym, was a keen Leigh Rugby League supporter and played for Leigh Miners when he was younger. He died after a training session in the gym, on the 3rd of Feburary 1999, aged 31.

The coroner`s verdict was left ventricular failure and hypertrophy.

Michael`s Sister has written :-

Paul had everything going for him. He was engaged to a wonderful girl called Sharon, whom he loved dearly, they owned their own home and he had just been promoted at work.

Paul`s Mum and Dad, Carole and Albert, brother Darren, and fiance Sharon have all gone to great depths to find out exactly why Paul died but to no avail until Albert`s brother saw an article on SDS. This prompted them to look on the Internet and that’s when Paul (on left) pictured here as Best Man to his dear they found out about CRY. friend Steve who was with him when he died

They write “Thank you so much for bringing this to light for us. It will not bring Paul back to us but it does help a little to understand” Paul’s workmates organised a charity Rugby match and have raised a brilliant £425 in his honour.

WIMBLEDON FUNDAY AT THE ALL ENGLAND LAWN TENNIS & CROQUET CLUB HAVE RAISED NEARLY £10,000 Wimbledon Fundays have been running for 6 years and in that time have raised nearly £10,000. Organised brilliantly by Frances Presley, here is a collection of Funday Photos taken over the years. Sadly we now have to say goodbye and thank you to all our very special helpers.

My turn!

How are we all going to fit on court?

Sorry - no strawberries - but we`ve lots of cakes

Ron & Frances - time out for a hug

X Chairman Ron Presley with his grandsons

The exhausted CRY team of volunteers

The Bond Bouncers - Our champion skippers

THE DURHAM MOBILE SCREENING WAS HELD ON THE 3rd & 4th JUNE DURHAM MOBILE SCREENING IN MEMORY OF DAVID CROSS, SARAH WOODHEAD AND STEPHEN LAMB Our second mobile screening weekend took place on Saturday, 3 and Sunday 4 June, this time in Durham, at the sports centre which the Newcastle United Football Club use for training. It was a superb venue where we were offered all the facilities and equipment required.

Forty sporty youngsters, the majority of which were competitive swimmers, came along to be screened.

BBC television came along and filmed youngsters being screened and BBC Radio Newcastle did a live interview on the Saturday morning with Kevin Alder about the screening weekend and CRY also received much press coverage throughout Durham.

Unfortunately we had no control over the weather. To say it rained all weekend is an understatement, it came down in sheets, non-stop. Many of you may have seen in the national press and television the floods, which happened in Durham that weekend as a result of the rain. This was Dr Firoozi's first visit to the north-east and I think if he ever plans to come back to visit this area he'll be contemplating hiring a boat! It really was that bad.

Once again, Harry Hindle's help in the lead up to the screening was invaluable and the technicians Richard Kumar and John Waudby again were terrific and worked so hard over the weekend, Richard carrying out the Echo testing and John the ECG testing, both with such care and consideration to the youngsters involved. It was a delight to meet Dr Sam Firoozi who spent time with every individual following their screening, which was much appreciated by the parents who accompanied the youngsters.

Jen Kinghorn and Carrie Kumar were superb in assisting Richard and John all weekend, with some welcome help from Linda Lamb on the Saturday afternoon. Viv and Jimmy Nailis, Pauline Wilkinson and Ian Perrin (who hails from New Zealand and has now sent a copy of the CRY brochure to family and friends there) manned the reception area over the weekend, assisted with form filling etc. and made everyone feel so welcome and very relaxed, they were wonderful. Kevin Alder was a great help in arranging such a superb venue at no cost to CRY, hotel accommodation at a very good rate and free lunch on the Saturday from the local Greggs bakery. Chris Kinghorn spent the day before and the day after the screening, collecting, delivering and driving essential items to and from the venue and during the actual screening weekend he and Kevin Alder together with Adrian Woodhead, helped everyone out whenever necessary, no matter what the task was.

We know the above named people were not spending their weekend to receive a huge vote of thanks, but that is exactly what we want to do, for without them we would not have had such an enjoyable, worth-while weekend. We have received many messages of thanks from the individuals/families being screened and without exception they were full of praise for the warm welcome they received on arrival at the venue and the care given to them by the technicians, their assistants and the cardiologist.

Thank you so much to everyone involved for making this screening such a fitting tribute to our son, David. Although this screening weekend was funded by David's Memorial Fund it was also dedicated to Stephen Lamb and Sarah Woodhead.

From Jo and Charlie Cross

IN MEMORY OF DAVID CROSS SARAH WOODHEAD AND STEPHEN LAMB Chris Kinghorn & Harry Hindle (CRY`s Screening Manager) discussing ‘what`s to do’ on the night before

Richard Kumar carrying out an Echo on Gavin Fell

Dr Sam Firoozi in consultation

A very happy Jo & Charlie Cross

Jo Cross & Adrian Woodhead (on left) with Pauline booking in Andrew & Laura Burgess

John Waudby carrying out an ECG on Andrew Burgess

John Waudby being filmed by the TV crew reading an ECG

Jo & Charlie`s superb team of helpers - Jim Nailis, Jen Kinghorn, Ian Perrin & Viv Nailis

BULLETIN BOARD SPECIAL THANKS TO MIKE FOSTER

IF ANYONE HAS ANY QUERIES ON ECG

A very special thank you to Mike Foster for his tremendous commitment to CRY and all the wonderful work he has done for us in both a voluntary and professional capacity over the last 4 years. Mike kickstarted our ECG Community Testing Programme and supported Fund Raising Projects including managing our London Marathon entrants and Commando Challenge event. He also produced many brilliant and much admired presentations for us. We are most grateful for the terrific contribution he has made to CRY. Rose and Mike seen here at the Commando Challenge

PROGRAMMES OR MOBILE SCREENING ENQUIRIES PLEASE CONTACT JAN SMITH CRY`S ADMINISTRATOR AT ST GEORGES HOSPITAL MEDICAL SCHOOL ON 0208 725 5098 OR jsmith@sghms.ac.uk

UPDATE MAILING LIST

IF YOUR MAILING ADDRESS IS INCORRECT PLEASE LET US KNOW AT THE OFFICE SO WE CAN KEEP OUR MAILING LIST UP TO DATE

OFFICE FURNITURE APPEAL We have now moved into local offices and CRY WEBSITE desperately need Office We are now in the throes of looking at Furniture. We would very the options to update our CRY website. much appreciate items Web design is moving donated or at very forward at a very fast rate and we don`t want to be left behind. special prices. especially sound proofed If anyone knows of a website panels! specialist who would be sympathetic to Please contact the CRY CRY`s needs or you have Office if you can help us in any ideas for the content / design

of the site please contact Tony at the office.

any way

BULLETIN BOARD Wonderful news from Keeley & Dave Ashley. Their beautiful baby daughter Jazmine Georgia May Ashley arrived at 10.40am on Thursday 18th May 2000 weighing 7lbs exactly. Keeley says “She is absolutely gorgeous but makes plenty of noise!!! - I just don`t seem to get anything done other than feeding or nappy changing”.

Congratulations to you from everyone in the office.

We have received a few requests for a copy of the ‘That`s Ester’ programme which was broadcast on 30.04.99. If you would like to borrow a copy then please send a self addressed padded Jiffy bag with stamps to the value of 66p to the Office.

CRY CARPET APPEAL We are desperately seeking carpeting for the downstairs of the new CRY office. The area needed to be covered is 40 feet x 27 feet (approx). Please contact the office if you can help

Ken Jones We would like to send Ken (from our CRY Screening Team) our best wishes and a speedy recovery from his recent surgery on his Big Toes. Up until now he has been in pain waiting for his operation and we look forward to seeing him and wife Annette at a CRY Mobile Screening again soon.

E MAIL CONTACTS Keeley Ashley - Keeleyashley@aol.com Roy Ball - royandgillball@selcroftavenue.freeserve.co.uk Nigel & Jenny Cole - nigel1949@hotmail.com Jo & Charlie Cross - chascross@compuserve.com Caroline Gard - carolinegard@hotmail.com Harry Hindle - Capt.Harry@ntlworld.com Anne Jolly - jollyjon@netcomuk.co.uk Alan & Gloria Moss - mosses@cherrystonescottage.freeserve.co.uk Jan Smith - jsmith@sghms.ac.uk Adrian Woodhead - adrian@woodhead88.freeserve.co.uk

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 RING FENCED FUNDRAISING

Are you up for THE CRY COMMANDO CHALLENGE? This year`s CRY Commando Challenge will be on Saturday 7th October

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

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

Have you run in The Flora London Marathon for CRY? Did you raise at least £1,000?

Would you like to be featured in our Update Brochure?

Could you write an account of your run in 400-700 words?

Can you supply a photo of yourself at the event?

If you have answered ‘Yes’ to all of the above Tony would be very pleased to hear from you on 01372 276187

at Woodbury Common in Devon

If you would like to register your team please contact Mike Foster Co-ordinator of CRY Commando Challenge on 01372 276187 Teams need to be a minimum of 3 and a maximum of 5 people

QUESTIONS & ANSWERS If anyone has any questions that they would like answered in the Brochure then please fax them through to the office. If we have enough interest then a Questions and Answers Page will be included in the Update. (No medical queries please)

If you would like Tony to consider any item for Bulletin Board please fax details (including your item) through to him on 01372 279335 Please bear in mind when organising fundraisings that it would be brilliant if you can take photos of your great day. It would also be extremely useful to Tony if, when you write in to the office, that you clearly state how much was raised, and by whom.

CRY`S Powerpoint Presentation is now available in either CD ROM or FLOPPY DISC formats. Ideal for fundraisings where a computer can be used to display information about CRY. Also featured is CRY`S Website so if any of you haven`t got access to the Internet and you would like to see the site now`s your chance! The cost is £10.00 inc P&P and can be obtained from the office

SECTION 64 GRANTS CRY was again unsuccessfull in it`s application for a Section 64 Grant for 1999. If anyone would like the list of successfull applicants please apply to the office

Luci’s Locket for CRY Luci has designed, especially for CRY, a superb sterling silver (or 9 carat gold) locket which opens to hold two photos.

The silver chain can be any length up to a maximum of 20 inches, and the locket can be personalised with the addition of any initial. The cost, including post, packing & insurance is £75,00 and order forms are available from the office. Gold initial and clasp are available for the additional charge of £15.00. All lockets are made individually, hallmarked and engraved on the back with CRY and our ECG line.

Maureen Ward CRY`s ECG “Consultant”!

Maureen has offered to talk to anyone needing help with organising Mobile Screenings, ECG Testing , or Ethical Approval. You name it. She`s done it!

Try her on 01834 843742

Michelle Houghton has compiled a brilliant recipes book if anyone would like a copy please contact Irene Wickers on 01254 707895. They cost £1.00 and all proceeds to go to the Neil Wickers & David Staff Memorial Fund

June Boulton is dedicating all her fundraising money for office furniture and equipment, in memory of her 17 year old son John, who died suddenly last year in his sleep of Sudden Adult Death Syndrome.

She is doing a “Pubs & Clubs” circuit & would be grateful for Raffle prizes. If you have any ideas or prizes please contact her on 0151 287 2519

ESPECIAL THANKS TO NIGEL COLE FOR THE FANTASTIC AMOUNT OF TIME HE SPENT IN ORGANISING THE ORDERING & DELIVERY OF OUR WONDERFUL NEW VAN

Would you like to run in The London Marathon for CRY?

Liz Foy for Sarah Louise Williamson 1999

If so please contact Mike Foster on phone 01329 231734 fax 01329 280379

LATEST STATISTICS NOW REVEAL THAT NEARLY 1 IN 100 CHILDREN ARE BORN WITH A HEART DEFECT

NEW CRY GUIDELINES BECAUSE OF THE GROWTH OF CRY, GUIDELINES FOR REPRESENTATIVES ARE BEING INTRODUCED WHICH WILL BE AVAILABLE ON REQUEST. CRY WILL BE INTRODUCING 8 U.K DIVISIONAL REPRESENTATIVES WHO WILL BE SUPPORTED BY COUNTY REPRESENTATIVES. OUR CRY ADMINISTRATOR JAN SMITH IS ALSO PRODUCING A MANUAL ON “GETTING INVOLVED WITH CRY” WHICH WE HOPE TO HAVE READY BY LATE SPRING 2000

SINEAD CHAPMAN We have heard that the surgery Sinead had to insert a defibrilator went very well, but she will be needing to return to the hospital for further treatment. We are all thinking of you Sinead, especially your friends on the CRY Counselling Course.