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CARDIAC RISK in the YOUNG Issue No. 15 September / October 1998 CRY SUBSCRIPTION AND /OR DONATION FORM Name............................................................................................... Address............................................................................................ Please use the .....................................................................Post Code................... enclosed FREE Telephone ........................................................ Date...................... POST envelope

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MEET OUR REPRESENTATIVES

IN THE SOUTHWEST - IT`S ROBERT CRABB I live with my wife and 2 children in North Devon and am head of Sport and Recreation for North Devon District Council. In our area much of the sport is informal and based around the famous surfing beaches. However I also look after everything from Leisure Centres and Swimming Pools to beach lifeguards whilst my wife does intensive care nursing in the local district hospital. I have always been physically active, which used to mean playing club rugby and swimming or playing water polo for the county but now is more likely to mean walking the family dogs - which is a great relaxation while the children look after the rest of our menagerie of rabbits, guinea pigs, cat, chickens and a cockerel who always makes a racket when I’m on the phone to Alison! I first encountered a young sudden cardiac death when a local athlete died whilst playing rugby 9 years ago. Little did I realise that I would be in hospital myself some 5 years later with a heart that refused to beat in the right rhythm. Fortunately I was referred to St George’s and am now in very good health thanks to the attention I received. I can again lead an active but careful life facilitated by the two glasses of red wine I drink every evening (for medicinal purposes only you understand!) Having gone through the agonising time of not knowing what was wrong, waiting for results, and also wondering if my children had inherited a potentially deadly disease, I do understand the impact such an event has on the whole family and also how swiftly it can strike. After my own experience I wanted to know more about cardiac abnormalities that affected fit and healthy young people and I was particularly interested in the possibility of screening athletes. CRY’S dedicated goals of raising awareness of cardiac risks in the under 35’s attracted my attention because of my direct link with active youngsters. My own teacher training also predisposed me to want very much to do something proactive to help and do something about it. Due to pressure of work I have not had the time I would like to spend on lobbying and raising awareness - something I consider an essential feature of CRY’S programme. If there is anyone out there who would like to help me cover the SouthWest please let me know! CRY and I, need you!!

NEWSLETTER SEPTEMBER / OCTOBER 1998

In October we had perhaps one of the most significant events in our short but robust history. This was the CRY Press Conference by the Loyley family during the Inquest at Bath into the sudden death of Anna immediately after she crossed the finishing line in the Bath ½ Marathon. Anna's Dad Phil refused to accept the circumstances until he had fully investigated, and in the course of his appeal for information found about CRY. Anna's Inquest aroused an extraordinary amount of interest and media coverage and most unusually extended to two days of detailed evidence - including 55 minutes from Professor McKenna - concluding with the Coroner's recommendation that sporting events must in future consider endorsing pre-competition screening. It was attended by a representative from the International Amateur Athletics Federation who have taken a very close interest and are meeting with Phil Loyley to discuss the possibility of having the French rules implemented throughout the 269 affiliated branches, including the British Amateur Athletics Federation. These rules would cost only a few hundred pounds more than at present but would be inherently safer. It is a chilling thought that if Anna had died on the line in her next race, in Paris, and not in Bath, she might well have been saved. Although they were with Anna within seconds the St. John' Ambulance team were unable to properly administer the defibrillator they attempted to use. It had still not been thought necessary to employ a full paramedic team and ambulance this year, in spite of the fact that last year a 30 year old man had also died by the finishing line of cardiac arrest. The difference in cost would have been £50. Professor McKenna said "to call the care (she received) suboptimal would be a charitable way to describe it." As many of our families involved in sport will attest, cardiac deaths do happen and we believe basic precautions should be taken. Raising awareness is the key, and the Loyley family are determined that changes must be made. A packed Press Conference at the Bath Hilton featured a deposition from Phil, Professor Bill McKenna and myself, and 3 CRY families who gave interviews corroborating our campaign message - that attention must now be paid to preventing these young sudden deaths which can no longer be dismissed as very rare. Consequent interviews on BBC West, Harlech and Radio 5 Live, coupled with Caroline Gard's interviews on BBC East and Anglia, and an article in The Mirror has led to another busy time for Brochure requests and great interest in details of our ECG programme. On the home front, both Kenny Bowen and Adrian Woodhead have maintained their momentum. Kenny has now raised £30,475 from his appeal to Trusts, including a £10,000 grant for development of our counselling programme, and donations for two more "Roving" ECG machines. Adrian has concluded his personal mission of writing to all M.P's (over 600 of them!) with details of our aims. With such support as we get from all of you, no wonder our message is being heard!

ELEANOR’S INTERVIEW WITH

TONY MASON

CRY`S new TRUSTEE Eleanor: What does being an actuary involve? Tony: An actuary is a financial problem solver. We study mathematics, statistics and economics and by analysing what has happened in the past we predict what will happen in the future. Most actuaries either work for insurance companies calculating the premium rates for life I have only got to understand the full assurance policies and assessing extent of the dangers as a result of attending the reserves needed or work as the CRY weekend earlier this year consultants advising companies on their pension schemes. I work as a consultant and my specialist area is medical negligence. Eleanor: Why did you decide to become a Trustee for CRY? Tony: I was involved in a fund raising weekend for CRY at Sutton Tennis Club and became interested in the charity after speaking with Alison Cox. I thought that my actuarial and business background may be of some use to CRY, particularly in the areas of research and raising awareness amongst the medical profession. I was also reminded of the death whilst I was at school of a 16 year old boy who died in his sleep during the night after I had played table tennis against him and I felt I wanted to help. Eleanor: When did you first hear about Sudden Death Syndrome? I suspect that most doctors are aware Tony: Probably after reading about of the condition but that too many do not the death of Terry Yorath’s son, but I take it seriously enough have only got to understand the full extent of the dangers as a result of attending the CRY weekend earlier this year.

Eleanor: Are there accurate statistics on how many apparently fit and healthy young people die suddenly I am certain that more can be done to educate each year? GPs and other doctors about the symptoms of SDS and the dangers of misdiagnosis Tony Unfortunately not. Although there are statistics on how many young people die the cause of death is not always investigated thoroughly and may be recorded as an accident. Eleanor: Do you think the NHS are fully aware of the condition? Tony I suspect that most doctors are aware of the condition but that too many do not take it seriously enough. Although there are statistics on how Eleanor: Do you think they could many young people die, the cause of death do more to help? is not always investigated thoroughly and may be recorded as an accident. Tony I am certain that more can be done to educate GP’s and other doctors about the symptoms of SDS and the dangers of misdiagnosis. Any measure, such as a national screening programme for young sportsmen and women, is something that should be provided by the NHS and not be something that has to rely on charity.

WHO BROKE THE WINDOW?

Photo-Call CRY`S echocardiographer Annette Jones sharing ........ with Ameri, Alison`s parrot, at our recent Nottingham Screening Weekend. o xpect t e u o y an cu . How c u say is inac g n o r w yo is you do if everything weatherman! g n i h t school : every e a TV Teacher hen you leave I`m going to b sir ob w get a j ? Pupil: Well rate

Small boy; Please m iss would you something i d tell me off f or idn`t do? Te acher: Of co Oh good! The u rse not,Small n i can tell y boy ou i haven`t d o n e m y A home work!

Teacher: if i were to ask you to add 9,731 to 232 and then halve it, what do you think you would get? Simon: The wrong answer sir!

middle aged woman was on her way to the shops when she saw a small boy leaning against the wall, smoking a cigar and swigging a bottle of whisky.The woman round? was appalled by this and r o t a l df r: rushed over to the boy and Teache r,is the worl s always Ambe y mum` demanded : Why aren`t you at e m m , l s l e s T mi ! school at this time of the day? ither crooked e N s ` t : i r me Ambe At school? I`m only telling

PETER MCDOWALL CLIMBED 11 MUNROES FOR CRY AND RAISED £379.65 At the end of August I returned from Scotland having done some sponsored hiking in the highlands for a couple of weeks, or more specifically climbing Munroes, mountains in Scotland over 3,000 feet.Previous expeditions to Scotland had given us good weather, but this year the weather was terrible, even for Scotland. The weather started off quite well and on the first hike the weather was actually quite pleasant, but by the time we were halfway up our second climb, Schiehallion, the weather had turned foul, and we found ourselves caught in high winds (we guessed about 40m.p.h.) and driving rain. Visibility was also poor, but we soon became accustomed to this over the course of our hikes. Out of our two weeks climbing we only had one day where the weather was actually hot, so much so that we even felt the need for sunscreen. However the rest of the climbs were more of an ordeal, presenting us with incredibly high winds, enough to tear you off the rocks, and we even got caught right in the middle of a thunderstorm, which was slightly worrying as one of our number was carrying the graphite leki poles, which are perfect conductors of electricity. At the end of our two week trip we returned with a slightly depressing set of photos. Only a few of which actually provided views, as most of the time we were stuck in the huge banks of cloud which seemed to roam the Scottish peaks permanently. We also returned with a large number of summit photos which all looked identical; a few soaking hikers huddled around a windswept OS trig-point with a backdrop of dense cloud. And because of this we’ve been accused of taking multiple photos on a single summit from different angles (which isn’t true I hasten to add.) However, at the end of it all I would definitely say it was worth it. Each climb is a brilliant experience, completely individual and unforgettable.

NIGEL FOSTER MEMORIAL FUND Southlands School in Lymington, Hampshire held a Mini Music Festival in Nigel`s memory and have sent us a wonderful cheque for £105.00

Andrew Pronger and Neil Thomas wanted to help CRY after they heard of the Commando Challenge so they decided to run in the Hastings half Marathon and have sent us a fantastic cheque for £204.00

CRAIG RAMPTON MEMORIAL FUND A non-uniform day at Saxon Shore Infant School in Portsmouth raised £165.00 for their chosen charity CRY. A fun day resulted in a brilliant donation

Mrs Richardson from Merchant Taylors` School for Girls has sent us a great cheque for £90.00. The money was raised last term by the pupils of form 3R

Can you find these words?

TEACHER CLASSROOM GYM SPORT MATHS FRENCH READING

OUR FUNDRAISERS IAN BOWEN MEMORIAL FUND

From left to right Sandra, Maralyn and Chris receiving a cheque from the directors of Kvaerner Redpath

Kvaerner Redpath has donated ÂŁ500.00 to CRY at the initiave of Alan Wilkinson (Sandra`s husband)

IN MEMORY OF ANDREW BALL Julie and Tony`s Bowling Day raised ÂŁ524.00 Despite the dodgy weather, and participants having to time their bowling in between showers - the day was a great success, due to the terrific CRY team of Roy and Gill,Julie and Tony and Sheila Clarke CRY`S Distribution Manager who also attended the event with our merchandise. Special thanks to Jan and John at The Weary Traveller for hosting the event and Interlink Express for sponsoring the Trophy. They have also offered to do the same for us next year Thank You so much!

IN MEMORY OF DAVID CROSS THE LADIES LEISURE GROUP HAVE RAISED £1,000.00 The Ladies Leisure Group, St John`s Church, Wideopen have been busy for CRY for the last 12 months organising Coffee Mornings and Raffles.The collage below shows members at two different Fundraisings. “At the `Taste of Devon` coffee Morning 130 Scones, 9lbs of clotted cream and 12lbs of strawberries went down well with everyone!! Thank goodness Jo can now stop worrying about running out of clotted cream at the event - or whether another batch of scones should be made for the freezer!” writes Charlie Cross with relief! Selling Raffle Tickets for 29 donated prizes

Eileen Howard & Betty Crawford (secretary)

Ann Brown (Treasurer)

Joyce Pickering with Jose Lee

Margaret Johnson Chairman & outstanding fundraiser

Iris and Jo Cross - preparing!

Betty & Scone, Jo & Arlene with Eileen

Margaret Johnson and Wendy Martin

Well Done! What a Fantastic turnout!

OUR FUNDRAISERS

IN MEMORY OF NIGEL FOSTER GEC Marconi in Portsmouth (Mike`s old Company)have sent us a great donation for £100.00 raised from their Collecting Boxes

IN MEMORY OF IAN BOWEN

ANDREW BALL MEMORIAL FUND

Debby Berry who works for Redcar and Cleveland Council organised a Raffle in aid of CRY and sent us a super donation of £101.00 – and at the initiative of Katy Lee, Trinity Computer Services have sent us a cheque for £25.00

Roy Ball has emptied out his Collecting Boxes again – the proceeds being £22.50. Also another cheque for £25.50 from the Bric-a-Brack store at the Summer fair and finally Sheila Sullivan has sent us £63.50 in Donations adding a further £111.50 to Andrew`s Fund

JASON ERICS MEMORIAL FUND Linda and Nick (Jason`s Uncle and Aunt) Have sent us a brilliant cheque for £100.00, with a Golfing Day and a Raffle being planned for the future!

IN MEMORY OF KEVIN SAYER On a grotty rainy Sunday the charity football match in Kevin`s memory raised a grand and unexpected total of £232.00. Everybody enjoyed themselves and there were plenty of smiles around despite the weather! 2 collecting boxes from Jubilee Hall contained £40.53, and earlier in the month Brian Collier held a sponsored TONY & EVY Power Boat Race at Alton Broad and managed to raise £74.30 So The Sayers had an excellent day raising a total of £346.83. We then received another cheque for £260.20 from Jex Rangers in memory of Kevin bringing the grand total to a brilliant £607.03. KEVIN SAYER

ANDY GARD MEMORIAL FUND THE FRINTON DANCE RAISED ÂŁ3,200 The band Crying Out Loud getting into their stride

Keep those elbows in - theres not much space

Dick and Doreen dancing the night away

Cathy Gard & Stav - enjoying the action Cheers!

Jeanne and Alan adding some backing vocals

Who said the twist would ever go out of fashion

Is there any way through to the bar this way ?

Four happy revellers later that evening

SCREENING OF ELITE ROVER JUNIOR TENNIS PLAYERS AT NOTTINGHAM Where did you say the Aorta was? Asks LTA Rover Coach Lawrence Kelly

What`s up Doc?

Me? - Tired? Cardiologists never get tired!

LTA Medical Officer Dr Mike Turner telling his Rover Kids it doesn`t hurt as long as you smile

Where did you say your wallet was?

Mike Foster and Harry Hindle wondering where Nottingham`s Forest is!

PHILIP ABRAHAM MEMORIAL FUND THE TIGERS CHILDRENS MOTORCYCLE DISPLAY TEAM DONATE £1,000 The Tigers are a very hardworking bunch, and travel all around the country putting on wonderful displays of precision riding, they first found out about CRY when doing a display at a fete in June 96 organised by Mary Abraham. Helping all sorts of children`s charitys The Tigers have donated to CRY the fantastic sum of £1,000. We have Lift Off!

Wanna hear me growl?

Trust us - we`re the Tigers

Look Mum no hands!

The Netley & Hamble Band

All reved up and raring to go!

Blazing Saddles?

Mary Abraham`s band

HELP!!

Having just received an analysis of our accounts it would appear stringent measures must be urgently applied to ensure the stability of our office. The success of our ECG programme (12 centres to be launched in 1999) has put great pressure on office costs. We now have a wait list for those to be opened in 2000. A great deal of money has been raised for this programme but it is ringfenced, and can only be used for this specific purpose. Meanwhile we have to pay careful attention to our general administration and aims . At the same time as coping with our screening programme which includes our ECG programme, our Mobile Screening programme and works supporting Professor McKenna’s research programme at St. George’s Hospital Medical School - the CRY office 1) raises awareness icluding the issue of our free information Brochure. There seems to be an insatiable demand for our brochure for which we have received commendations from a full spectrum of applicants including M.P’s, journalists, doctors, nurses, the lay public and most importantly families who have suffered from a tragedy. This mushrooming of interest has vastly increased our production costs. Since January we have spent over £20,000 on this alone. In the last month, since the Loyley’s Press Conference we have spent £90.00 on purchasing 20 reams (10,000 sheets) of paper! We now need someone to work part time on collating these Brochures. 2) offers counsel and support which includes producing a free Counselling Leaflet for which requests are often 100 at a time In an effort to cope cost-effectively, we have restructured staffing by reducing secretarial costs and welcoming offers of voluntary help for manning the phone and doing general office tasks. However we must now prune back even more aggressively and one of the possible casualties of our current crisis is likely to be the CRY Dinner which for the last two years has been heavily subsidised. For all of you out their in the field who fundraise for us enabling us to continue with our “raising awareness campaign” and “offering of counselling and support” in the current form a big thank you. Incidentally, it has been suggested that we charge for our publications. I can tell you, we have tried this - it doesn’t work and so is not a viable option. I know people are often not clear where their fundraising money goes. There is an apprehension it could be squandered. So frequently charities get such terrible press in this regard. CRY uses all the voluntary help it can get for non-specific jobs. However we have to pay the market rate to get a Secretary. We also have Tony and Mike whose remunerations are lower than in their previous jobs - such is their commitment. I am personally earning less than I was in 1985 in the commercial sector! There are currently no office costs apart from heating and lighting. I hope that this answers some of your questions including those you might want to ask but feel would be inappropriate to do so. We are enormously grateful to those of you who fund our office directly for the above campaign aims. Without your support we would very clearly, and probably very quickly, just simply cease to exist!

RAISING AWARENESS The Daily Mirror 16.10.98 With Permission

RAISING AWARENESS The Bath Chronicle 16.10.98 With Permission

RAISING AWARENESS The Dorset Evening Echo 07.10.98 With Permission

* BEWARE *

* BEWARE *

COLLECTING BOXES ATTRACT THIEVES!

COLLECTING BOXES ATTRACT THIEVES!

Bulletin Board 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.

ROY BALL

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

A Special Thank You to Roy Ball who in 1999 is stepping down as CRY`S Representative in ROY BALL the Midlands.Roy has been a stalward supporter from the inception of CRY and we are most grateful for his ideas and fundraising efforts on CRY`S behalf. Roy will still be there for anyone who would like to contact him on Talking Point and be available to help us in any way he can. A Special thank you to Dennis Merchant who with the help of his neighbour Raj Puri got a beautiful pentium computer donated to the office

Granville Staff (CRY`S North West Representative)

if so Please contact Mike Foster phone / fax 01329 231734

Bernard Rissik It is with great sadness that we have to report the recent sudden death of Bernard Rissik one of our Trustees, and would like to extend our deepest sympathy to his widow, Judy.

RAISING AWARENESS The Evening Gazette 16.09.98 With Permission

THE IAN BOWEN MEMORIAL FUND HAS SO FAR RAISED NEARLY £13,000 TOWARDS OUR CRY ECG TESTING PROGRAMME FUND

RAISING AWARENESS The Frinton and Walton Gazette With Permission

RAISING AWARENESS The Bath Chronicle 16.10.98 With Permission

The Daily Telegraph 17.10.98 With Permission

The CRY Press Conference held during Anna Loyley`s Inquest (L to R) Lawyer Richard Lazar, Anna`s fiancee Nick Raggett, Alison Cox, Phil Loyley & Proffessor McKenna

RAISING AWARENESS The Lancashire Evening Telegraph 14.10.98 With Permission

THE FAMILIES OF DAVID STAFF AND NEIL WICKERS HAVE SO FAR RAISED OVER £10,000 TOWARDS OUR CRY ECG TESTING PROGRAMME IN MEMORY OF THEIR SONS

RAISING AWARENESS With Permission Dream UK

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