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

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

CARDIAC RISK in the YOUNG Issue No. 27 September / October 2000 CRY SUBSCRIPTION AND / OR DONATION FORM Name............................................................................................... Address............................................................................................ Please use .....................................................................Post Code................... the enclosed FREE Telephone ........................................................ Date...................... POST envelope

Annual subscription for 6 bi-monthly updates - £3.00


MEET OUR REPRESENTATIVES IN AVON - IT`S LISA KING My name is Lisa King. I am 34 years old and I have 2 wonderful children, Hollie aged 8 and Joshua aged 7. I first heard about CRY last year following the sudden death of Andrew my husband from Cardiac Arrhythmia. He was 32 years old and his life was dedicated to my children and myself. He was a very fit man and ironically 2 weeks before he died he ran the Bath ½ marathon. (CRY was the nominated charity that year). Andrew died on April 12 1999. At the time of his death I knew nothing about CRY but shortly afterwards read an article in Bella Magazine. I rang Alison Cox immediately, as I was greatly concerned about my 2 children inheriting this genetic condition.

Lisa & Andrew King

Thankfully Alison put me in touch with Professor McKenna at St. George's Hospital. Professor McKenna helped a great deal - both children were screened and found to be negative. CRY has helped me enormously to cope and understand and come to terms with our tragic loss. At CRY there is always a gentle supportive helping hand and someone to talk to at the time you need it most. If one life could be saved through raising people's awareness of this condition then all the fundraising and events would be worth it. The secret is to identify this condition early and as such there should be compulsory screening for all school age children. I look forward to helping CRY in anyway I can raise awareness.


NEWSLETTER September / October 2000 It was with great pride that Tony went to collect the newly signwritten CRY Van (see Update). The delays in formalising our lease has meant that we have had to wait 12 long months before our "insignia" could be instated and finally getting there tastes very sweet indeed. Our CRY van now makes us highly visible and as Tony said on arriving back at the office "I just feel I want to keep on driving it around so everyone can see what we are doing and how to contact us." There was a poignancy too that the first mobile screening for which the newly signwritten CRY van was used was that of Kenny and Maralyn Bowen in Redcar in memory of their son Ian who died of Wolfe-Parkinson-White 4 years ago. Kenny had just written his 800th letter to trusts when we arrived and his monumental fundraising initiative has included a donation in memory of Margaret Rickman of ÂŁ20,000 for our van. Kenny's endeavours have so far raised over ÂŁ180,000 and he will be part of CRY lore as the mechanic from Redcar who in 18 months transformed the status of CRY's bank account! It is reassurring to learn that he is resisting all offers from his employers at British Steel to confront their solvency problems as he is far too busy looking after CRY! It was also wonderful to see the terrific effort made by Granville and Sue Staff who, Wedding Anniversary not with standing spent 7 hours of it on the round trip to Redcar from Darwen to give Kenny and Maralyn their support for this event. On the weekend of October 13 I made a fleeting visit to Poland where I had been invited to meet the Professor of Social Medicine and 2 of his Research Fellows from the University of Lublin Medical School who are embarking on a major study into SDS and want to link with us. Developing international links very much strengthens our position with research projects and their enthusiasm, kindness and hospitality made the whirlwind trip very worthwhile. In this Update we have taken the unusual step of including the transcript of an interview on Radio 4 You and Yours Programme which attracts a highly informed audience of professional people averaging 600,000 daily. This was a live interview between the Director of the National Screening Committee, a representative from the British Heart Foundation and myself discussing the feasibility of proactive cardiac screening. A robust debate indeed! As you will see we are introducing with this issue Jo Roffey who is to be CRY's Community Development Officer. I answered Jo's phone call to the office in July in response to an advert for Office Administration. It took about 10 seconds to realise that this was no ordinary recruit. Jo has been working in PR in London for the last few years and was curious to learn more about us. Recently I have not been able to give all of you the help and support that I used to have time for - consequently Jo's fortuitous intervention was nothing short of miraculous. Many of you will by now have met or spoken to Jo and - subject to her baby's arrival in March 2001 - we eagerly await the development of the exciting projects now on her drawing board. With this Update you will find our CRY Christmas Card which brings with it our thanks for your terrific support in this past year. We never forget that It is through the endeavours of all of you that our work becomes possible.


JULIE`S INTERVIEW WITH

Dr Sam Firoozi CRY`s


Theme - The CRY Van

Photo-Call wHAT ARE STEVE & TONY UP TO? ....... ... ... ... ..... .. .. . . . . . . . . . . .!


M Y D AY OUT TO THE C RY OFFICE

Jo Roffey discussing fundraising with Caroline Gard & Julie

Today I'm going to the new CRY office to see what its all about. The car journey takes two hours and I have bought some things to do and play with. I think we are mostly going to talk to Caroline (Gard) and Mum. We have got there now and I would like to introduce all the people that we are going to meet. First there's Tony. Tony has brownish hair, brown eyes and a pony tail. Tony is my friend and very understanding. He produces the CRY magazine and he's the one I give my work to for the Children's Page. Next, there's Alison. Alison has blue eyes and glasses. She is very kind to me and always wants to help me. Alison is the founder of CRY and is in charge. She gave me a teddy bear to look after. Thirdly, there is Harry. Harry seemed very busy. Harry's job that day was to collect a new carpet for the office and to lay it, Julie approving The Kids for CRY with the help of the others. Next section in the Update with Tony Steve, Alison's son, came along. Steve has brown/gingery coloured long hair. He was very kind to me and he was very strong. First we had to move around all the furniture to the end of the office so that we could lay the carpet down. I remember taking the big teddy bear and tried to sit him down on a chair. Alison gave me a middle sized lovely white bear and I gave it a red CRY sash. I later called it Sasha. Alison said that I would be allowed to get some badges and sell them at school to raise awareness of CRY. Everyone was so pleased with the new carpet and then we said goodbye to everyone at the office and we went to dinner with Alison and Caroline. We had a lovely dinner and I got three pencils in the shop - one for Alison, one for Caroline and of course, one for me! We then said goodbye to Alison and said we would come again if we Marion (Julie`s Mum) & Julie, lend a could and then we had the journey home hand to Capt Harry & Steve with the brilliant to Frinton. That was my day at the CRY new donated carpet for the office office.


IN MEMORY OF BADIR AL-CHALABI Annabelle Greco raised a fantastic ÂŁ85.00 for CRY

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 autumn is now well under way and in contrast to nature slowing down, CRY is speeding up! Maralyn and Kenny Bowen based in Redcar, held their first Mobile Cardiac Screening weekend over 28th-29th October, which was a great success. Linda and Keith Lamb are a few weeks away from their Mobile Screening weekend scheduled for 11-12th November. Two Mobile Screening dates have been booked for the Lawn Tennis Association November 2nd in Sutton, and 22nd November in Bath. We also have Sally Reid in Berkshire and Caroline Gard in Frinton, managing ECG testing Events. Caroline's ECG testing will be held on Wednesday 9th December at Tendring Technology College and Sally's event will take place during the evening of Friday 17th November and Sunday 19th November at Uplands County Primary School, Sandhurst. With their second ECG machine in place, Sally and her team are aiming to perform ECG tests on 100 clients, so the paperwork will be flying!

ECG Testing The definitive Fund Managers ECG Testing Guide will be available as of 30th November. Taking on board comments and contributions from various CRY contacts, we hope that the guide will provide interested parties with a much more detailed overview of what's involved. Anyone who is seriously interested in ECG Testing within their local community can request a copy of the guide from me at St George's. If you want to take ECG Testing forward, please remember to: · Have requested ring-fenced funding for your particular project (forms available from CRY at St George's) · Write to or e-mail me requesting authorisation to set up a Testing Session, prior to book ing dates. This is so we can plan the response time required for the incoming workload · Complete an Acceptance Form agreeing to operate within guidelines as set out by St George's and CRY. CRY creates and distributes written information and various items for all events. If you have been approached by a family or interested party for copies of your material supplied by CRY would you please request that they call us directly. We do incorporate changes and developments on a regular basis and in order to comply with the Hospitals legal requirements, we must deal with each group or family directly. Please help us to help you achieve your goal by keeping us directly informed of your plans!

ECG Machines You might be aware from previous reports that CRY has now established contact with a new ECG supplier. John Bick has recently been sent upgrades for all equipment, so we will be working through a programme of overhauling the majority of our ECG machines and


ensuring that the extended warranty, replacement leads and memory codes have been incorporated. Costs for an ECG will rise as slightly as of January 2001 but the increase reflects a far superior and reliable service. The company will deliver (within one week of orders being placed),ensure full training is supplied and follow up where necessary, and they have very kindly offered to supply maintenance and engineering support for all CRY machines, regardless of where they were initially purchased. It helps us to deliver a first rate service to our clients. For anyone currently committed to fundraising for an ECG, costs will remain at ÂŁ5,000. ECG carry bags are currently held at Head Office, so if you require one and I'm not here, please call the office direct.

COPYRIGHT On a more serious note, we now need to ensure that all our contacts are aware that CRY's written material is protected under Copyright. If you are considering using CRY's information, you must gain written authorisation from the CRY office before using any such material. Secondly, if anyone wants to draw on another families experiences (i.e. for an interview or web site) you must seek written permission from the family concerned, prior to going to print. We recently learnt of a case where a known, prominent psychologist was receiving specialist medical care - unbeknown to the psychologist in care, their complex personal life history had been described, in great detail, on a web site. Although no names were mentioned, other psychologists reading the information knew exactly who the case scenario referred to. Needless to say, a colourful legal case followed. If you have not received permission from the family concerned, we would respectfully ask that you do not use their details. Depending on circumstances, it could be both upsetting and shocking to discover that personal experience has been shared without consent or permission, with an unknown audience. Trust plays a key role in an organisation such as CRY and we trust that all our contacts will act in a responsible and sensitive manner. We will do all we can to protect our families, and will, where necessary, seek external advice should any contact behave in an unethical manner which involves CRY families. I realise that this sounds rather stern, but we want to reassure our families that we will look out for them.

Marathon 2000 We have now closed the books for Marathon 2000 and been able to award our top five male and female fundraisers with a London Marathon Finishers Watch. This year's winners were Sue Brown, Brian Ford, Helen Atkinson, Debbie Wenman, Peter Gard, Lynne Weston, Les Gardner Nick Pitt, Margy Al Chalabi and Paul Mulvaney. A big thank to everyone who took part in the Marathon - the commitment and support.

Sports Cardiology The first proposal was submitted to our Trustee Board. Comments and suggestions will be incorporated and we hope to take this forward to the next stage before the close of the year.

Ethics All quiet at the current time, waiting for Ethics Committee Boards to meet and report back to us.

Being seen at St George's Just to reiterate, please remember that you can be seen for cardiac evaluation at St George's on supply of a referral letter from your GP. Private screening can be arranged with Professor McKenna, but the popularity of this clinic means that spare slots need to be booked in advance.

Best wishes from CRY at St George's.


JO ROFFEY CRY`S COMMUNITY DEVOLEPMENT OFFICER REPORTS


GREG`S PAGE


MARGY AL-CHALABI HAS RAISED £1,500.00 FOR CRY BY RUNNING IN THE FLORA LONDON MARATHON IN MEMORY OF BADIR Millennium Marathon for Badir Nine years ago my dearest son, Badir, died of hypertrophic cardiomyopathy on a cross-country run at the age of 9. To mark the 21st Century my daughter, Munah, and I ran the Flora London marathon for Badir and raised money for both CRY and CMA. Munah managed to get a place for Flora London Marathon and thankfully CRY were able to offer me a Golden Bond place. It was extremeWhat a team! - Munah & Margy ly hard work getting sponsorships but we finally managed to raise a nice round figure of £3,000 thus being able to hand over a cheque of £1,500 to both CRY and CMA. Our best sponsor was Annabelle Greco who celebrated her ninth birthday with a party and on her invites to her friends Annabelle asked for no presents but a contribution to CRY and CMA to sponsor us for the Flora London marathon. We were very touched by Annabelle's enormous gesture and very grateful for the £170 she managed to raise. (See Kids for CRY) Munah and I started our training in November following the training guides in the Marathon News and Runners World magazines. As I have not run for umpteen years it was very hard at the beginning but it was amazing how the body can actually condition itself to run distances you never thought were possible. During the cold winter months getting out of the front door was the hardest part. It was difficult to keep to the training schedule but we did most of it especially the long distances which prepare you for the big day. The morning of the Marathon finally arrived and the trains to Greenwich, the starting point, were packed with fellow runners. To our relief the weather was perfect and the encroaching feeling of nerves and excitement began to set in as Munah and I struggled through the crowds to find our starting places but ended up at the very back of 32,000 runners! This was great because we were amongst all the fancy dress runners ranging from rhinos to buses and men dressed as babies. The atmosphere was incredible and the cheering crowds of people who lined the streets along the whole 26.2 miles kept us motivated, especially the children handing out sweets and water or just wanting to touch your hand. We reached the halfway point, which was Tower Bridge, and most of our friends were waiting for us there. Legs still felt fine and seeing everyone cheering us on gave us a boost of energy. The next half of the Marathon was hard work and taking a tip from one of the Runners World pacers we walked fast for one minute at each mile. This enabled us to keep running at the same pace throughout the Marathon and we did not suffer any cramps or injuries. By now a few runners were starting to have problems and 'yes' the cobblestones were awful. Although we did not hit the dreaded 'wall' the last 5 miles were the most difficult. It was tough but the spirit of Badir was with us all the way. Just as we reached Buckingham Palace, Munah and I both had an incredible surge of energy and we managed to sprint down the Mall and stepped onto the finishing line on exactly the same second. It was EUPHORIC !!! It took us exactly 5 hours and just a few minutes behind Frank Bruno who was at the start of the run - not bad. A big thank you to all our sponsors who made it possible and B.


THE CRY VAN


OUR FUNDRAISERS Paul seen here in Malta whilst on holiday with his girlfriend shortly before he died

IN MEMORY OF PAUL BUXTON Paul was a tall, handsome, 23yr old who was loved by so many people. He worked at Huyton Leisure Centre as a life guard, he was also Head Pool Attendant and made the most of the centre`s facilities. He swam, played football and worked out in the gym. He was an extremely fit lad who was the picture of health, yet died suddenly at home on 17.09.98 from Mycardial Infection. Staff at Huyton Leisure Centre where Paul and his mum Louise worked, organised a 5 Hour Aerobathon. This included different workouts. Kick Fit, Circuit Training, Aerobics, Boxercise/Step, and Hi/Lo Aerobics. Instructers Terry, Mike, Sue, Sam, Alan, Karen and top Aerobic Presenter Peter Stephens kept everyone on the go. Throughout the day they held Raffles, and special prizes were awarded. Thank you to everyone that helped make the day a runaway success which raised an awesome ÂŁ732.00in memory of Paul Mark Cox seen here at The Sutton Tennis & Squash Club Fundraising weekend

CRY CORE FUNDING CRY Patron Mark Cox has contributed a donation of ÂŁ250.00 he received from Bromley Tennis and Squash Club.


A BRILLIANT ÂŁ1,119.70 HAS BEEN RAISED IN MEMORY OF KEN & NIGEL KEN BYRNE Ken Byrne was 33 and married to Karen, they were teenage sweethearts. She met him when she was 16 and they grew up together. He worked for a electrical & plumbing company, was fit and active and played football twice a week, yet on 01.10.97 half an hour after Karen had poped into see him at work, he suddenly collapsed while he was walking down a corridor. He left three children. Katy 13, Karrianne 11, and Kieran 5. His death was recorded as Sudden Death Syndrome.

NIGEL EDGAR

Nigel Edgar was a postman with 2 children, James 6 and Jane 5. He met his wife Mandy when she was 22. He was also fit and healthy. On 18.08.98 Nigel complained of feeling unwell, and had an early night, he died suddenly in his sleep in bed with Mandy. Mandy woke in the middle of the night and thought Nigel was snoring, but in fact he was taking his last breaths.

Since the deaths of Ken and Nigel their wives Karen and Mandy have become friends, and joined forces to raise awareness of Sudden Death Syndrome and CRY. A Coffee Afternoon and Tombola was held, which had wonderful turnout and raised a brilliant ÂŁ573.70 in memory of Ken & Nigel. Several Businesses and supporters have also contributed to the fund. With special thanks to George Heapy`s Record Shop, Dalesauna Ltd, B Leadbeater, and Cleandeal Limited.


A FANTASTIC 11,160.30 HAS BEEN RAISED IN MEMORY OF LEWIS MARSH Lewis with his friend Nick taken on a trip to Monte Carlo

The Rotary Club of East Hampsted joined with the Bracknell Family Baptist Church. A Carol Service was held attended by over 850 people raising £4,000.00 for the Lewis Marsh Memorial Fund.

We are extremely grateful to Marks & Spencer for a wonderful donation of £2,000.00 which will be used specifically towards our ECG Testing Programme in the Sandhurst area

Sandhurst Town Boys Football Club held it`s Annual Memorial Tournament for Lewis and raised an incredible £5,160.30


PHIL BARLOW 23 1 99 - rec.1249. We would like to thank Mr and Mrs A Cartledge for their kind donation of £25 to the Philip Barlow Memorial Fund . 6 1 99 - rec 1209.1210 - 'Black Tie' fund raising event raised £1060. 120 friends and family at the event which is held each year, with the donation this year being made to Philip Barlows Memorial Fund. Events included a raffle and a hilarious 'Dicky Bow' buy and sell. ………..(photos possibly not arrived yet). (2 June 99 - rec 1510, 1511). Congratulations to Mollie Barlow for completing the 15 mile Wirral Coastal Walk on the 16th May and raising £210 for Philip's Memorial Fund in the process. (£190, £20) (photos to come?) (rec 1526) Well done to Natalie Barlow and all her family in organising the Charity Dinner Dance for the 'Philip Barlow Memorial Fund on Saturday April 10th 1999. The Dance was held at the Leofric Hotel in Coventry City Centre and had a turnout of 128 for a night of food, fun and lots of money raising. The total amount raised during the evening was £1343.55, after which Joanne and Natalie approached their employees, Barclays Bank donated a further £1000 and AXA Sunlife £250, bringing the total to a staggering £2593.55. Rec.26 (17 2 00) - Mollie Barlow enclosed cheques for £1500 raised at the annual 'Black tie' Charity Christmas Party held in December 1999.


PHIL BARLOW


FRINTON HELD IT`S FIRST ECG TESTING SESSION ON THE We held our first ECG Testing Session on 10th June. After much hard work of organising meetings for parents, letters of information, Consent Forms and Questionnaires, we were ready to set up appointments and test some young sports players from the local football and tennis clubs. We borrowed back one of our ECG machines from the local Doctors surgery, and with the support of two ECG technicians from the Colchester General Hospital we were able to set up for the day. We are lucky in having such supportive ECG technicians who are very keen to help CRY in the ECG testing programme in such an important and practical way. They worked together and between them tested 45 youngsters from 9.30 onwards. There were plenty of coffee breaks with some extremely naughty chocolate biscuits to keep strength up and some delicious sandwiches for lunch, which were very welcome! I learnt from Harry during the Frinton Screening last year, that by giving each individual their own appointment time we found that we never became overwhelmed by numbers, and the whole atmosphere was calm and pleasant for those coming along to be tested, and it is definitely well worth taking the extra time to be well organised at the start! Thanks Harry! Thanks must also go to Jan at St. George's, for all her support in so many ways, to Angie and Loretta, our fantastic technicians without whom we couldn't have done it, to Marian, Julie and Toni who were so supportive on the day "on the desk" and to the Tendring School who let us have their buildings once again. I hope that this will be the start of a programme that will offer the chance to be tested to many other youngsters, and have already been contacted by other groups that are interested in setting up something for their young players. So hopefully this is just the beginning.

Caroline Gard


10TH JUNE IN MEMORY OF ANDY GARD There`s those biscuits again! Toni, Marion & Julie “working hard”?

Just take a deep breath this won`t hurt at all!

Julie ‘Kids for CRY Tanner’ - always busy

“ Mr Cool”

Lorretta & Angie catching up with their paperwork

Carolyn, James & Sara looking at the brilliant CRY raising awareness boards


RAISING AWARENESS With Permission

You & Yours interview with Alison Cox on Radio 4


RAISING AWARENESS With Permission

Alison, I would like to congratulate you and give you my support for your activity and broadcast on R4 today. Our son Sam died aged 19 earlier this year of hypertrophic cardiomyopathy. He was not an athlete. He had had a heart murmur as a baby. The reality for us was that the medical profession, in France where we live now, proved quite clueless as to either the existence or risk of this type of illness. At the age of 16 my son went to the doctor over here complaining of heart pains and was told that this was nothing to worry about. There was no test and no diagnosis. Since his death we have all had doppler echography and proper heart examinations. I was flabbergasted to hear someone on the R4 programme say basically, that you should wait until there is a death in the family before screening. We did, I suppose. Regards, Neil McNaughton Here is a photo of Sam.


RAISING AWARENESS With Permission Woman 06.11.00


RAISING AWARENESS With Permission Runners World October 2000


RAISING AWARENESS With Permission Evening Star 18.06.00


RAISING AWARENESS With Permission Sunday Independent 03.09.00


RAISING AWARENESS With Permission Sunday Independent 03.09.00


RAISING AWARENESS With Permission Echo


RAISING AWARENESS With Permission Evening Gazette 13.09.00


RAISING AWARENESS With Permission Evening Gazette 25.08.00


RAISING AWARENESS With Permission Surrey Mirror 28.09.00


RAISING AWARENESS With Permission


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@ntlworld.com Anne Jolly - jollyjon@netcomuk.co.uk Alan & Gloria Moss - mosses@cherrystonescottage.freeserve.co.uk Tim & Sylvia Salisbury - thesalisburys@cwctv.net Granville Staff (work) - granville.staff@darwen.deconorth.com Jan Smith - jsmith@sghms.ac.uk Adrian Woodhead - adrian@woodhead88.freeserve.co.uk

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 01737 363222

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 01737 363444 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.


CRY Update Magazine - Issue 27