CRY Update Magazine - Issue 26

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

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

CARDIAC RISK in the YOUNG Issue No. 26 July / August 2000 CRY SUBSCRIPTION AND / OR DONATION FORM Name...............................................................................................

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Please use .....................................................................Post Code................... the enclosed FREE Telephone ........................................................ Date......................

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Annual subscription for 6 bi-monthly updates - £3.00

MEET OUR REPRESENTATIVES IN WEST GLAMORGAN - IT`S PAULETTE SMITH Christiaan had lived in Worcester for six weeks and came home every weekend. The last time I collected him from the rail station he complained he felt 'fluee' and a little under the weather.

On Saturday he left to catch the train to Worcester fully recovered where he was to meet friends that evening. We are a close family and spoke daily. The last time we spoke to Christiaan was Wednesday evening.

It was on the Friday morning when Christaain didn't show for work that alarm bells rang! He was so reliable and trustworthy that his colleagues suspected something must be wrong for him not to show, so they went to his house. They looked through the letterbox and found him slumped at the bottom of the stairs. Our buoyant, effervescent son so full of life had died from a condition called Myocarditis at the age of 24.

The loss of our son has turned our world upside down. We had never heard of Sudden Death Syndrome but now know that there is a huge population of people to educate and make aware. If we gave all our young people ECG's with their school inoculations, it would be a step in the right direction to detect hidden and treatable heart conditions preventing unnecessary deaths, sparing many parents agony, pain and give those at risk a chance.

CRY has been an enormous help in providing information and by letting us know that we are not suffering alone. Ursula Bick, a representative for CRY had heard of our loss through a friend and as a result kindly wrote to us. Ursula was able to offer us something that very few people can and that's the same experience of grief. I am exceptionally grateful to the CRY team for their help and continued support through a very emotional time.

NEWSLETTER July / August 2000 From the time that Alex and Fraser Fotheringham found CRY after the tragic death from Sudden Death Syndrome of their beloved only child Joanne, they have been working relentlessly towards setting up a cardiac screening programme in their area for young people. Their dream is now well on the way to becoming a reality when this month they were awarded ethical approval for screening the schoolchildren in the Western Isles where Joanne was a teacher on the Isle of Lewis. After getting past this most difficult and time consuming hurdle we now await final confirmation for full clearance of this programme which, if this pace of progress is maintained, will act as our pilot study for all of our school screening programmes.

As these last 2 months have been a little less frenetic than our usual gallop it has given us time to catch up on some reconstruction and I hope that the enclosed flier will answer some of your questions on who to go to for what! The rate that CRY is expanding must sometimes make it a real challenge for you all to keep up and so I felt it was time we introduced a little visual aid!

Our appeals for help in furnishing our office are going extremely well thanks to you all and the incorrigible Harry Hindle who does our "collecting" for us. Last week our Frinton contingent Julie (Kids for CRY) Tanner, her Mum Marion and Caroline Gard arrived at the office just as Harry was off-loading the superb new carpeting a friend of a friend of Caroline's had just donated. Excellent timing both for a hands on contribution (see Bulletin Board!) and also to appreciate the fantastic difference this has made. Our downstairs office has a real luxury look now.

On August 3rd we had a high profile article in The Daily Telegraph which has made a major impact and introduced us to some interesting opportunities for our screening programme. I collaborated on this article over 2 months ago and was unaware it had been published until we started receiving telephone calls so if you would like to be notified when CRY articles are printed please give Jo Roffey your e-mail address and she can then contact you so that you can get the relevant newspaper on the day.

With the approach of Autumn (and its implications!) we are very proud to again be able to include this years Christmas Card leaflet and I would like to take the opportunity of thanking John Fenwick of Benfoy Press for his tremendous support in printing these, and Derek Bayliss and Caroline Gard for all the work in their production. We do hope that you find some you will enjoy sending which will not only give pleasure but also, and most importantly, raise the awareness of CRY and our aims.

JULIE`S INTERVIEW WITH

Dr Sanjay Sharma CRY`s New Trustee

Julie

How long have you supported CRY?

Sanjay

I've been involved with CRY now for almost four years.

Julie

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

Sanjay

I was introduced to CRY through a meeting with Alison Cox. Through her contacts at St George's she had heard that I was interested in researching the hearts' response to exercise and the various conditions that can cause death in young, apparently healthy people.

When I met Alison, I learnt that CRY was supporting work in these particular areas and we teamed up. I've been CRY's Cardiologist ever since.

The dedication of the work carried forward by families,volunteers and staff linked to CRY is fantastic and all that work is reflected in the growing number of people and organisations who are now aware of CRY.

Julie

What do you do to help CRY?

Sanjay

The cardiology team at St George's provides help and support for CRY in relation to it's clinical workload. We read ECG's and heart scans (ECHO's) and now that I am a Trustee, I can look forward to helping developing other initiatives and areas of work which will benefit families who link in with CRY.

Julie

How do you read the ECGs?

Sanjay

Well, this is a tough question! In order to read an ECG you need to learn a different language, and usually you do this through being trained at Medical School. The jagged lines you see on an ECG print out all have different and very important meanings and all cardiologists have to learn how to interpret these properly in order to identify heart conditions.

Julie

Does this work keep you really busy?

Sanjay

I work in various cardiology clinics and perform surgical procedures on patients who have hearts that don't work as well as they should. St George's is a very busy hospital and we see a lot of patients during a normal week but with my final year of training nearly complete, I can now make more of a contribution to CRY.

Julie

What do you think is the most important part of the work that CRY does?

Sanjay

Raising awareness of the symptoms that cause heart problems is such an important area of work. In many cases, once people are aware of the symptoms, they know what to look out for. Without awareness, it's incredibly difficult for young people and their parents to understand the extent of the problems and take appropriate action.

Julie

Has raising awareness of CRY been good - if so, how?

Sanjay

CRY has done an amazing job at raising awareness through both the local and national press. We might not yet be up with the big guns but CRY is making great strides into the general media, local government, and soon too, the business environment. The dedication of the work carried forward by families, volunteers and staff linked to CRY is fantastic and all that work is reflected in the growing number of people and organisations who are now aware of CRY.

Julie

What do you ity for what happens in CRY. Now that I am formally on board, hope for CRY I hope that I can offer support for developing clinical strategies in the future? which will help to further establish CRY's good name.

Sanjay

I hope that CRY is able to raise awareness at a national level for hidden cardiac conditions and that we receive recognition for the value of our work. We need to further develop our expertise and resources for supporting young athletes via the Sports Cardiology Unit and help to ensure that the general public have an awareness of the issues of hidden cardiac conditions.

Julie

What does it mean to become a Trustee?

Sanjay

Being offered the opportunity to become involved with CRY was very special, since I have always felt a deep level of interest and responsibility for what happens in CRY. Now that I am formally on board, I hope that I can offer support for developing clinical strategies which will help to further establish CRY's good name. I am very much looking forward to this new and exciting phase in my career. Being actively involved in promoting and supporting CRY will be a pleasure and a priviledge.

I have always felt a deep level of interest and responsibil-

Theme - Olympics

Photo-Call WHO DOES THIS TATTOO BELONG TO ... ........ . . . . . . . . . . .!

ANDY GARD MEMORIAL FUND The Walton Pier Bowling Alley did not quite know what had hit them, when on the evening of 22nd October sixty + year 8 students from the Tendring Technology College went "bowling for CRY".

Everyone who went had a really fantastic time and the staff at the bowling alley were very tolerant of all the considerable noise and excitement!

Teacher Andy Holmes, who has been an ambassador for CRY ever since the Gard family became involved, and who has single - handedly been responsible for making the owning of a CRY badge an essential part of the school uniform at Tendring College, arranged the bowling evening. Many thanks are once again due to him for all his fantastic efforts.

The added interest for the students on the night was the incredible raffle, with prizes which included a football signed by the West Ham squad, some T. shirts from the England World Cup training camp. There was also a representative rugby shirt, donated by teacher Jonathon Lewis. Thank you very much Mr Lewis! The pier staff donated some cuddly toys when they realised that the evening was in aid of CRY. Many thanks also goes to them for their donation.

A fantastic total of almost ÂŁ50 was raised from this fun evening.

IAN BOWEN MEMORIAL FUND Steven Davidson ran the Junior Great North Run in memory of Ian on the 10th October and raised a brilliant total of ÂŁ127.00 for Ian`s Memorial Fund

GOLDERS HILL SCHOOL HAS RAISED A FANTASTIC £1,500 IN MEMORY OF ALAIN NIN Alain Nin was extremely fit. Rugby was his life, he played twice a week and refereed on Sundays. He had also won cups for cycling, he was a fantastic swimmer and did several mini Marathons. But last April, six days before his 29th birthday, Alain dropped dead on the rugby pitch (God knew, that's where he would have wished to die). Since his death, Alain's sister Marlene Ziu has been campaigning to raise awareness of SDS and CRY. She has since found that her older brother has the same condition, ARVC. Marlene's first fundraising was a balloon race at her school- Golders Hill School. She writes "We all counted down from 10 and released all the balloons. It was a wonderful and thrilling moment but very emotional for me to see all these balloons flying high in the sky and I had a little thought for Alain. The children were very excited because they were not just watching but participated and we had lots of laughs when some children let go of their balloons too soon. It was a very successful launch and everyone enjoyed it. The Parents have been very generous and the children worked very hard - Thank you all. I can report that the winning ticket was sent back from Yugoslavia. Watch this space‌ more balloon races to come!

Marlene, where is our tea?

A well deserved tea-break

.....3, 2, 1, lift off !!!

Wait, I`m doing the last one!

Waiting for the launch with excitement

Headmistress Mrs Eglash presenting the cheque for CRY

IN MEMORY OF DAVID CROSS

11 year old Jonathon Henderson completed the Junior Great North Run and raised a super £43.00 for David`s Memorial Fund. Betty Crawford (Jonathon`s Grandmother) writes “ we were all very proud of him as he had hurt his leg 2 days before, but he was determined to run for David”.

WORDSEARCH

can you find these words?

LAURA MOSS MEMORIAL FUND Bincombe Valley Primary School in Weymouth Dorset, made a collection from a non uniform day, by the children in memory of Laura, and raised a brilliant ÂŁ62.00.

The Weymouth Operatic Workshop have raised a super ÂŁ520.00 for Laura`s Memorial Fund. Collections were made during performances of their show. Many of the girls from the workshop went to school with Laura.

Laura seen here with parents Gloria & Alan

JAN SMITH CRY`S ADMINISTRATOR REPORTS FROM CARDIOLOGICAL SCIENCES ST GEORGES HOSPITAL MEDICAL SCHOOL Summer (what Summer??) is speeding by and it's time for another update with work at St George's.

The recent Telegraph article generated a lot of interest for CRY and we have received a number of calls from parents and athletes alike seeking information on screening. Both the Medical School and the Hospital here at St George's received copies of the paper, and I am trying to persuade the Medical School to do an article on CRY's work!

The office receives a wide variety of headed paper formats and layouts from volunteers who are fundraising on CRY's behalf. We now feel it would be a good time to provide all active volunteers with the same format of Headed paper so that we have an easily identifiable look. If you have access to a computer (Word for Windows), you can be provided with a disk which will contain a copy of CRY's headed paper. Each time you write a letter, you can call up the Headed Paper document, type up your letter and SAVE AS giving the document another name. I know that some volunteers have their own preferred letter head, but this can send out very confusing messages, since people receiving the letters aren't sure if they are fund raising for a specific memorial fund held in a bank, or a memorial fund held with CRY. Full instructions will be provided and you can request a disk through the office which will be forwarded to you together with a hard copy so you know what your CRY paper should look like! If you don't have access to a computer, we can print up batches of your headed paper for you. The office will require a copy letter of whatever you are sending out, and of course, anything to do with fundraising should be run by Jo in the office, prior to sending out to the general public.

The Lawn Tennis Association have undergone some big changes recently - one of these is to have CRY's Mobile Unit attend at all their regional centres. Prior to this request, CRY was invited to attend annually at one major centre. This is a superb research opportunity for CRY and we are very pleased to be involved with the LTA at a more local level.

In line with the creation of a contract between CRY and St George's, it will be necessary from next year for CRY's charges for Mobile Cardiac Screenings to be increased. Those of you who have been involved with CRY for some time will know that charges have not been raised since we began, but as of January we are obliged to meet a fee to St George's. This is for the provision of a Cardiologist and the expertise required to read ECG's and ECHO's. CRY itself will not receive any money from this rise. The Screenings will cost ÂŁ4,000 as of January. To date we have relied heavily upon the goodwill of St George's who allow their staff time out to attend our screenings, and then time out again to go through all the clinical material when they get back into the office.

With a contract however, we know we can rely upon a better turnaround time for work.

Most recently, John Bick and I met with the MD of two companies who supply ECG machines to CRY. Historically, we've had a few problems, and we didn't know quite what sort of reception we would receive. The meeting was very helpful, and we both feel a lot more optimistic about our involvement with both companies.

Amongst other discussion points, CRY should receive extended warranty and a memory upgrade on twelve purchased MAC 1200 machines, plus a memory upgrade for the original CardioSmart machines together with all missing materials from our original orders. John will be taking delivery of missing materials, so that he can ensure that each machine is fully kitted out. We will also be checking our records of serial numbers at this time.

It was also agreed that our new supplier will be the provider for all consumables, as well as CRY's point of contact for any problems experienced with equipment. This will be incredibly helpful, since we will no longer have to work with two technical support teams, two finance sections, two materials departments. I will be writing to all surgeries to give them this news, together with a brief questionnaire on the equipment. So anyone experiencing problems with their machine should contact me, and I will pass information on to our contact at Response Medical. Surgeries can purchase their consumables direct, paying as an independent customer. Hospitals will have their own arrangements for purchasing. CRY handles purchasing as a central project, and if you are considering purchasing an ECG machine please contact me in the first instance.

Unfortunately, we cannot be responsible for any key purchases made without CRY`s knowledge and full consent and we are not able to pick projects up which were begun as an independent matter.

Someone asked me recently "so what takes up time at St George's?". Well, we have a lot of one-off enquiries which need swift attention, and we have dozens of on-going projects to maintain and develop as well as keep up with our families. Being based in the Medical School means that CRY can ensure that it's clinical working practice is up to speed. The challenge is to ensure that communications between CRY and the Medical School continue to develop so that we can offer an appropriate and swift service. One particular area we need to improve is patient screening within the Hospital.

Firstly, anyone coming in through CRY who has experienced cardiac symptoms can be seen, with the submission of a GP referral letter. The letter can be faxed for the attention of Dr Sam Firoozi on 0208 725 5905. The number of technical staff based here does not allow for an instant appointment, and we generally locate slots around cancellations (which happen quite frequently) or whenever there is a suitable gap. We try to get patients in for screening within 10-15 days wherever possible and, of course, genuine emergencies are always catered for. I'm sorry that we can't push things any farther forward at the moment for either NHS or private care, but it is hoped that the number of staff will be back up to acceptable figures in the New Year. If you would like to discuss screening issues at St George's please contact me on 0208 725 5098.

Discussions and meetings around Sports Cardiology are moving quite quickly, and we aim to have a full discussion proposal with the Trustees shortly. A possible site has been viewed, and we are now working out our costs to get the unit up and running. We still have a long way to go, but progress is very steady!

Best wishes from CRY at St George's.

Jan.

DR GREG WHYTE IS RETIRING FROM HIS OLYMPIC CAREER CRY's Chairman Olympic Pentathlete, Dr Greg Whyte was twice UK Champion but through pressure of work has been unable to make the Olympic team again this year and is now having to retire from this incredible event which requires expertise in 5 different arenas - fencing, swimming, running, horse riding and shooting. To maintain his standard prior to major competition Greg sometimes had to train for up to 40 hours a week - an impossible schedule to sustain for an amateur athlete. However Greg will be maintaining his fitness for 2001 as he has reserved a CRY "Heart" place to run in the London Marathon for us! Watch for him on the telly at the Finish line on April 22nd 2001!

WELCOME TO OUR NEW TRUSTEE DR SANJAY SHARMA Sanjay has been a dedicated supporter of CRY's aims since we first got together in 1996. At great personal inconvenience (and with major sacrifices of family time) Sanjay has dedicated numerous precious weekends to our screening programme and with the starburst development of his own career has become a crucial member of CRY's team. We are very proud that he has accepted the position of becoming a Trustee as he will undoubtedly be able to contribute enormously to raising awareness of CRY in the medical world and to the overall development management and extension of our screening programme.

PETER GARD HAS RAISED ÂŁ3,703.62

BY RUNNING IN THE FLORA LONDON MARATHON IN MEMORY OF ANDY I am not very fond of swimming. For several reasons, the most important of which is the thought of repetitively pounding up and down the lanes at the local pool like an automaton. When you play squash or tennis you have to be consistent and repetitive but the scope for thinking out a strategy and outmanoeuvring your opponent, changing the pace of the game, provides a wider stimulation (at least to me!).

Now running seems a bit like swimming. On my way to work I always see a regular bunch of old duffers running along the esplanade in splendid isolation, pony tails flapping in the breeze (oh! perhaps they are not so old, they only look it!!), and I Peter seen here wonder why they do it. at Canary Wharf The idea of joining their ranks and becoming a mile crunching zombie would have been unthinkable until a chance remark from Caroline (grand veteran of 1 marathon) and the ensuing peer pressure to help her train for her second caused me to start jogging.

I tried under cover of darkness to reach a level of fitness where I could keep up with her, beginning with a run to the golf club.

Only 2 miles there and back so a good target for my first attempt.

After 5 minutes (no possibly less if I'm honest) my windpipe was on fire, my chest was wrapped up in something tighter than bands of steel, and I had to stop to do up my shoelaces, which for some reason took another 5 minutes, and I still wasn't even a quarter of the way to the club. That first 'run' took forever and required another 3 stops before I got home where I realised I couldn't climb the stairs to the bathroom without clutching the banister rails for support. And I play regular team squash, what was going on?

So the grinding monotonous discomfort began, not at all auspiciously. The number of times I called out to Andy for help, the times I chided him for the pain I was going through. What have you got me in to by getting us involved with CRY. Caroline seemed to be taking it all so easily in her stride, would I ever be able to run the 26.2 miles. Emotions waxed and waned.

Comparisons with swimmers kept leaping in to my head, what sort of nerd had I become, plodding up and down the seafront?

One night though I came home from a training run, and it dawned on me that without realising what or when it had happened, I could speak to Caroline, coherently without breaks to draw breath and that I could bound up the stairs for a shower.

The corner had been turned. It was only a few weeks that had seemed like as many months but now there was reward for the effort. 4, 6, 8, 10, 16 miles: these all became targets to strive for, literally milestones to reach. The anxiety had been replaced with anticipation. Bring on the big day!

April 16, 2000 came and went all too suddenly. The people in the run, the marshals the spectators and supporters all wanted to make the London Marathon a fun day for themselves and everyone who would benefit from the millions of pounds raised for charity. If humanity could always pull together like this what a world we would have to live in.

Other people have told their tales of the race: the meeting of rhinos and mobile toilets, centipedes and buses, other red shirted CRY runners, old friends and new so I shall not repeat these.

Just to say the sense of achievement at running up the Mall and through the finish line made all those difficult times so worthwhile, and the fact that Caroline and I achieved this run together is something very special to us both.

I still think of the people chasing up and down a swimming pool or pounding the tarmac as slightly bonkers, and the idea of doing it again, well I'd declare myself a stark raving lunatic, but then again, it wouldn't be the first time I'd been called mad!!

A WONDERFUL £5,486.00 HAS BEEN RAISED IN MEMORY OF LAURA FOX Since Laura`s death in August 1998 her parents Kate and Robi, twin brother Mark and Sister Sam have all been raising awareness of SDS and CRY. With help from their friends, and colleagues they have been very successful with their fund raising. with thanks to the Patient Services Dept of Suffolk Health, Essex Police Air Support Unit, and all who have helped - this is what they have been up to.

Laura Fox

The Senior Officers Mess at Suffolk Constabulary donated the proceeds of their Charity Night. A fantastic figure of £1,500.00 was raised in memory of Laura A cake stall and draw at the Suffolk Police Family Day raised a brilliant £220.00

Wickham Market Bowls Club held their Annual Charity Day at Wickham Market and donated £250.00 raised on the day to the Laura Fox Memorial Fund

A team of intrepid “climbers” completed The Three Peaks Challenge, raising an awesome £3516.00 for CRY in memory of Laura The team of (from the left) Neill Pearce, Paul Gaffer, Robi Fox, Keith Preston, Gerry (‘Wheel Man’) Grady and Paul Murphy scaled Ben Nevis, Scafell Pike and Mount Snowdon in a little under 35 hours.

THE 4TH ANNUAL ‘H’ MEMORIAL GOLF TOURNAMENT The day started at the crack of dawn with the vain hope that the weather would hold on the September Sunday. This, the fourth tournament, held in memory of "H", my brother Howard, who died in July 1996, was to be the biggest yet.

There were 90 golfers in total with many "old timers" (sorry Dad!!!), who have played since the first year, but also many newcomers who had been recruited to support the event this year.

The day started off dry, and most of the golfers were able to tee-off without needing their waterproofs…This however did not last!!!!! It was cold and windy, but all who had come to support the cause managed to keep on smiling!

Of course, there were refreshments at the ninth hole served by the long-suffering wives and girlfriends. There were a few problems working out how to use the coffee pot, but the drinks were definitely served with a smile.

The trophy winner was Maurice Campbell, second Kevin Masters and third Richard Burgess. Phil Hannah was the lucky winner of the booby prize and was presented with the knitted golfer! A voucher for £100 was donated by David Johnson Golf Ltd, as a prize for hitting the ball in the net on the driving range.

Due to the increase in numbers the evening event took place on the 9th October. The wonderful buffet was prepared by the Howard's in-laws, Lyn and Cliff Elborough.

All raffle prizes and items for auction were donated, and a mention should be given to Lexmark; Supplies Team; Atlas Copco; Sony; Canon; Fellowes; Computacenter; Richard Constan; Camden Graphics; and all who donated prizes.

A good time was had by all. The events, including sponsorship, jointly raised £4,000 for Howard's Memorial Fund. The 2000 event is taking place on Sunday 8th October with the hope that this year, there will be more than 100 golfers!!!!

If you are interested in playing, please contact me by phone or e-mail.

(01442 269197 - keeleyashley@aol.com).

The Ashley Team

Atlas Copco offer continued support to the event

The “Old Timers” - (sorry Dad!)

The Computacenter Team raring to go ..... (no, not home!)

Natalie & Wendy still smiling

Carole & Claire How does it work?

IN MEMORY OF HOWARD JENNINGS RAISED £4,000.00 Phil Harrington & Grant Nivett riding in style

The Two Colin`s ... which is which??

Lyn & Cliff Elborough with Keeley

A big thank you to Lyn & Cliff Elborough for the wonderful grub!

Go for it Ladies!

so that`s what a golf club should be used for!

Kevin Masters receiving the runner up prize

Nicola Campbell collecting The ‘H’ Memorial Trophy on behalf of Husband Maurice

Cliff with spoils (including signed photos of Bobby & Jackie Charlton)

What a lot of prizes

Phil Hannah collecting the booby prize

Maurice Campbell the1999 ‘H’ Memorial Trophy winner

THE FRINTON COMMUNITY AND FRIENDS HAVE RAISED Three Frinton Families have helped CRY at a time of immense grief of their own. Having heard much about the work of CRY, and the initiatives being set up to try and test young people for heart conditions, they all chose to ask people to donate money to CRY in lieu of flowers at the funerals of their loved ones.

The Russell Family have been family friends of the Gards for some 10 years, and when Harry Russell died suddenly from a heart attack his wife Sandra and their 2 children had no hesitation in deciding that they wanted CRY to be the beneficiary of any funds donated. They knew Harry would have wanted this as well. The absolutely incredible sum of £2,280.00 has been donated to CRY in Harry`s memory. An amazing tribute, and one for which we are incredibly grateful.

The Grimwade family also responded to the CRY appeal in the same fashion when Betty Grimwade sadly died, Betty`s Husband and Son, decided that they too would like any money donated in her memory to benefit the appeal to test young people for the type of heart conditions which can cause Sudden Death. The amazing amount of £1069.00 has now been donated to the Andrew Gard fund in memory of Betty, a very popular Frinton Lady who is sadly missed by many.

Claire Tanner who was 92 years old when she died had always been interested in the work at St Helena Hospice in Colchester, but when she saw the devastation to Family and Friends after Andy`s sudden death, she decided that she wanted any donations after her own death to benefit the living, and particularly CRY. Claire`s family agreed and donated a fantastic £250.00 to Andy`s fund in her memory.

As a family we are incredibly amazed at the way people in the midst of their own grief and pain have been able to think of others, and specifically of CRY, and we send our heartfelt thanks. Hopefully we will soon have the programme in place so that we can make a difference.

Caroline Gard A craft fair was organised by Gwen Horlock at The Columbine Centre in Walton attended by Peter & Caroline Gard, and their helpers.

One particular helper, Elsie, who is in her 70`s had a very unusual way of persuading people to part with their money ‘raffle tickets a pound a strip’ followed by the partial removal of an item of clothing, and the none too subtle suggestion of another kind of strip if the money was not forthcoming. The technique she employed worked a treat to swell the raffle takings to over £300.00. The Frinton CRY band Crying Out Loud also performed brilliantly. The total raised was a fantastic £462.00 in memory of Andy.

Tendring District A Disco organised by Rickie Instead of receiving gifts for their Golden Wedding Anniversary, Mr & Quinn & Nancy Edwards Council have Mrs Hunn asked for donations to raised a foot tapping £175.00 donated a super CRY and raised £245.00 in Andy`s for Andy`s fund £200 to Andy`s fund memory some of the CRY runners seen The sale of ‘British This is the 3rd year that half way round the Fun Run the Frinton & Walton Grand Prix’ tickets Fun Run has attracted donated by The support for the Andy Gard Memorial Fund.

Held over a 5 mile Glencoe Hotel distance scores of raised a great adults & children raised a wonderful £750.00 £300.00

AN INCREDIBLE ÂŁ7,156 IN MEMORY OF ANDREW GARD On the 4th September a dance was held at Frinton Tennis Club. Over 250 people of all ages came along and enjoyed a variety of music from 3 local bands. The dancing continued until one in the morning and was only disrupted by some of the more adventurous taking a swim in the pool around midnight (some even kept their clothes on!) The event raised an awesome ÂŁ1,375.00 for the Andrew Gard Memorial Fund.

Your Hosts Naomi, Lucy & Cathy Has Mike Caroline & Cathy Gard been Doctored?

Say Cheese

Dave, Di & Sally enjoying the atmosphere

Dancing the night away

Has anyone seen my clothes?

A FANTASTIC £10,979.29 HAS BEEN RAISED IN MEMORY OF LEWIS MARSH Lewis was a pupil at Ranelagh School. He collapsed suddenly during a tennis lesson at Farley Wood tennis courts in Bracknell on 02.05.98, dying just three weeks before his 14th Birthday. He was a talented sportsman who loved football and hockey, but dreamt of one day becoming a tennis professional and playing at Wimbledon.

An Oak tree was planted in the school grounds at a spot where Lewis and his Year 9 friends regularly met at lunch time.

Lewis pictured here with sisters Sorelle and Chevaun

Lewis`s elder sister Chevaun was a student at The Guildford School of Acting. They offered to put on a show for him. The Marsh`s and their team found a venue, and organised a fantastic show in his honour entitled ‘A Celebration of Song in Memory of Lewis Marsh’ the event was a sell out and raised an incredible £2,959.77

The Reverend W Meyer raised a heavenly £1,580.00 by losing 4 stone in weight in memory of Lewis

Pauline Whittle has organised a series of fund raisings with a lot of hard work, she has managed to raise a wonderful £1125.60 in memory of Lewis.

The South East Hewlett Packard Berkshire Gang have sent to CRY Show donated the a fantastic tremendous donation of amount of £800 to £800.00 for the Lewis Marsh the Lewis Marsh memorial fund Memorial Fund.

The Rotary Club of Bracknell connected with The Mayor`s charity appeal raised a brilliant £583.92 in memory of Lewis

A great £230 was raised by the Sandhurst Women`s Institute in memory of Lewis

The Victoria Arms Public House in Binfield have raised a brilliant £2,900.00 by staging several ‘Quiz Nights’

DARWEN ECG TESTING WAS After months and months of hard, time consuming work, especially by Irene and Bill Wickers and our respective families and friends, the first mass screening programme in this area that had been organised on behalf of The Neil Wickers` and David Staff Memorial Fund and CRY was about to take place. The venue, the "team" of Technicians and volunteers, the hotel accommodation, and the people to be screened had all been sorted, appointments made, here we were ready to go. The nerves were beginning to jangle at the thought that after all the hard work that had been put in, we were finally here, would everything work, will everyone turn up, will we conduct ourselves in a professional manner, would the press turn up as promised and most of all, would we identify someone with a problem or if not, at least put people's minds at ease.

Granville Staff & Bill Wickers with the CRY van

Gillian Haddow filling out the forms in the CRY Van with clients

FRIDAY Although Sue and I had been involved in the peripheral side of the event, the first time that I had really been actively involved in the organisation of the weekend was on the Friday night, when I arrived at Irene's to pick up Captain Harry, who had driven up that day in the battle bus with the Acusan machine, to take him to Manchester Airport to meet Doctor Sam Firoozi and Helen Driver, the Echo Technician. When I got there, they were halfway through their evening meal with a couple of empty bottles of red wine on the table and another opened plus the fact that the food smelt good, it made my mouth water. (And there I was playing chauffeur, most inconsiderate. Torture.)

Anyway, Harry and I set off for Manchester Airport only to find on arriving that the plane was going to be an hour late. How can it be an hour late when it only takes 45 minutes to fly from Gatwick? At least it gave Harry and I time to be become acquainted with each other, and to explore each other's backgrounds into how we both became involved with CRY. Doctor Sam and Helen duly arrived, and we were whisked away to their Hotel for the night before the weekend work was to begin.

SATURDAY We arrived at the venue at about 9.15a.m to put the finishing touches to the rooms, getting together tables

Dr Sam Firoozi examining his patient

Gillian Middlehurst taking an ECG

The refreshments area - most important

HELD ON THE 17TH & 18TH JUNE with key rings, pens and badges etc, and erecting various signs directing people to the venue. Most of the work had been done the previous Friday afternoon by Harry, Irene, Bill and their helpers. (With a special thank you to Marie Yates for all you do!)

The first appointment was at 9.45a.m and from that time I can honestly say that everything appeared to go like clockwork, people arrived on time, the relevant questionnaires were filled in, details taken, the E.C.G's and Echo's carried out very professionally not only by our technicians and by Helen but also all the helpers making the tea and biscuits, and Dr. Sam's "after surgery" helped to alleviate peoples fears and anxieties allowing people to ask questions and to leave with peace of mind and wiser, more aware about Cardiac conditions.

The press came to take photographs of the work being done - at long last we were beginning to make people aware of the need for screenings. The publicity can not only do us good locally but also help put CRY on the map and help identify it's aims, goals and achievements to date.

During the day, we had people just turning up to get information as to where we were coming from, taking away literature and also asking to be screened on the spot. We accommodated as many people as possible with E.C.G's and Dr. Sam's advice.

Whilst all of this was going on, I had again had to play chauffeur. I had to drive to Preston in order to pick up Alison, who was travelling up from London by train to offer her support to our Inaugural screening venture.

Having arrived at Preston Station at 14.45p.m ready for Alison's arrival I discovered that her train had broken down at Warrington and would be at least an hour late.

Was I destined to spend all the weekend stranded at airports and railway stations? I was beginning to wonder.

Alison finally arrived at Preston at 16.25p.m one and a half hours late; Sir Richard Branson had pulled out all of the stops having despatched another locomotive to rescue Alison from her demise.

We finally arrived at the venue where upon Alison could see that everything was going to plan with no real

Helen Driver echocardiographer from St George’s Hospital

Gillian Middlehurst ECG technician from local hospital

Julie Kay ECG technician from local hospital

Doreen Wickers

Irene Wickers (Neil`s mum)

IN MEMORY OF DAVID STAFF & NEIL WICKERS worries or concerns, but it was great to see her adding her weight and support to the proceedings.

Pat Rutter

We finally finished for the day at around 5.30p.m everyone was exhausted after what had been a very tiring but successful day.

SUNDAY Again the day started at around 9.15a.m. The good Dr. Sam, the technicians and volunteers turning up satisfied with the previous day and fully refreshed.

Kathleen Taylor

The day went relatively smoothly with no real problems, just a couple of minor incidents but nothing to detract from the success of the weekend.

The screenings were finished around 2.00p.m. We then had to leave the venue how we found it, load up the Acusan back into the battle bus and extend our thanks and appreciation to all the helpers and especially Harry, Dr. Sam and Helen, and all The Andrew Gard Memorial Fund for kitting out the battle bus for us all to use.

What had been a seed, months and months before had become reality, something that everyone associated with the weekend could be extremely proud of. In our eyes, a brilliant success.

This had been the culmination of a lot of people's efforts and financial support over the past couple of years.

Angela Wilson

John Squelch

The intention now is to locate the E.C.G machine in the local Health Centre to be used for the community and to hold a mass screening event annually.

We had succeeded in organising and implementing something that had been brought about through the sadness and loss of two families.

On a personal note, I would like to thank Irene and Bill for their efforts in making the weekend the success it undoubtedly was .

GRANVILLE STAFF

Jacquelene Squelch

SANDHURST ECG TESTING WAS HELD ON I couldn't really believe we were actually ready for the testing weekend. It has only been two years since the fund was set up and here we were with our ECG machine and a team of volunteers ready to go.

We had fifty-eight youngsters to get through over two days. They came from the Sandhurst Town Boys Football Club, who have raised an incredible amount for us and Lasikers Tennis Club - where Lewis used to play. I think everyone was a little apprehensive - the team and the young people. But as the weekend wore on everyone relaxed and the atmosphere was great. Many of the youngsters said how easy it all was. Everyone worked well together - we had made up a rota so that we all had a "turn" at the different jobs - making the coffee (always the most important bit!), greeting the youngsters, helping them through the test. There was a real team spirit and lots of laughter too.

The second day we "ironed" out the little problems that had occurred - simple things like pressing hard enough on the ECG form so that all four copies were legible. We also had to be very vigilant with the mobile phones - we found they affected the machines so we made sure we asked everyone to check theirs was off - the notices were not effective!!

My own three sons were tested over the weekend - they took the "wind-ups" about waxing chests and legs very well!!

We now know that all youngsters tested negative - I have to say I cried when Jan Smith told me on the phone - relief for my sons and everyone else. I also felt incredibly lucky that I was able to have my sons tested.

To all at CRY - thank you for your help and support - especially Jan. To the team - you were great! To dear Jill - Lewis would be so proud of his mum, you did so well over the weekend. Here's to the next testing!!

Sally Reid

THE 24TH & 25TH JUNE IN MEMORY OF LEWIS MARSH Volunteer helpers Janet & Bobbi checking the forms

Gail & Sonja taking the measurements

Phillipa RGN wires up David Reid for his test as Sonja looks on

Sue RGN testing Alistair Reid

The Marsh Team

BULLETIN BOARD CRY CARPET APPEAL

IF ANYONE HAS ANY QUERIES ON ECG 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 Following our office carpet appeal PLEASE LET US KNOW We are extremely grateful for the donation of 2 AT THE OFFICE SO WE wonderful carpets through a contact of Bob CAN KEEP OUR MAILING Smith from Frinton. Capt Harry delivered them LIST UP TO DATE to the CRY office, and made a brilliant job of fitting them (with a little help). Seen above from left to right are Steve Cox, Julie (Kids for CRY) Tanner, Marion Tanner, Big Ted, Tony Hill, Capt Harry and Caroline Gard.

OFFICE FURNITURE APPEAL

of the site please contact Tony at the office.

any way

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

BULLETIN BOARD If you have ever wanted to do a parachute jump here is your chance. CRY - Cardiac Risk in the Young are looking for adventurous volunteers to make a fundraising parachute jump and if you raise enough in sponsorship you will get to jump for free! There are two types of jump available - a 'Tandem Skydive' from 10,000 feet attached to a professional instructor and a 'Static Line' jump which is performed solo for up to 3,000 feet - and you can jump from any one of 23 British Parachute Association approved airfields across the UK. No experience is necessary as all training is given and if you raise between £260 and £330 you will receive your jump for free.

So if you would like to make a thrilling skydive from 10,000 feet or an exhilarating solo jump from up to 3,000 feet give Jo Roffey a call at the office on 01737 363222 - she'll send you a full information pack and everything you need to take part in the experience of a lifetime.

CRY NOW HAS A

We have received a few requests for a copy of the ‘That`s Ester’ programme which was broadcast on NEW WEBSITE 30.04.99. If you would like to borrow a copy then ADDRESS WHICH IS please send a self addressed padded Jiffy bag www.c-r-y.org.uk with stamps to the value of 66p to the Office.

E MAIL CONTACTS CRY head office - cry@c-r-y.org.uk 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@Harry.UK.com Anne Jolly - jollyjon@netcomuk.co.uk Alan & Gloria Moss - mosses@cherrystonescottage.freeserve.co.uk Granville Staff (work) - granville.staff@darwen.deconorth.com 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 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

CRY COMMANDO CHALLENGE Unfortunately we have had insufficient entries for this event, which will now be postphoned for this year.

We anticipate running the CRY Commando Challenge again next year in the Autumn of 2001 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.

Come Run The London Marathon with CRY We have accumulated in excess of 100 places for the world famous London Marathon, which is being held on 22nd April 2001.

This year we are having a major drive to promote CRY and raise awareness of cardiac risk in the young with a presence bigger and bolder than ever before! With CRY's chairman Dr Greg Whyte our great British pentathlon athlete leading a group of 20 runners, dressed in eye-catching CRY heart costumes, we're guaranteed to generate media interest.

The remaining Golden Bond guaranteed places will each raise a minimum of ÂŁ1,000 to support CRY and its launch of new screening initiatives for 2001.

So if you, or anybody you know would like to run for CRY either with a CRY heart costume or without, we would be delighted to hear from you. Please contact Jo Roffey on 01737 363222 as soon as possible.

We are also working extremely hard to recruit runners locally by teaming up with our local sports centres, local newspapers, libraries etc. If I can work with you to support and recruit runners within your local community by supplying posters or speaking with your local radio station, papers, please let me know. We are, as always, grateful for your help.

RAISING AWARENESS

RAISING AWARENESS