BI-MONTHLY UPDATE News, Views & Do’s -
♥Meet our Representatives ♥Newsletter ♥Kids for CRY ♥♥♥♥♥♥♥Eleanor’s Interview ♥Jokes Corner ♥Puzzles ♥Our Fundraisers ♥Raising Awareness ♥Bulletin Board
CARDIAC RISK in the YOUNG Issue No. 19 May / June 1999 CRY SUBSCRIPTION AND /OR DONATION FORM Name............................................................................................... Address............................................................................................ Please use the .....................................................................Post Code................... enclosed FREE Telephone ........................................................ Date...................... POST envelope
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CRY'S ACHIEVEMENTS IN THE LAST 4 YEARS • Funding of the CRY echocardiogram machine used by Professor McKenna’s team at St. George’s Hospital, Tooting which has so far screened over 10,000 people. • The instigation of a CRY Mobile Screening Team which will go out to any national venue to screen “fit and healthy” individuals on request. • Mobile Screenings at venues including Welwyn Garden City, Nottingham, Bisham, Birmingham, Everton, Finchley, Norwich, Loddon, Northwich, Bournemouth, Manchester, Tenby, Worksop, and Brighouse. • The purchase/donation of 16 ECG machines for use in our ECG Testing Programme. • The development of 8 ECG Community Testing Programmes to be introduced after the autumn of 1999. • A training programme for volunteers supporting our ECG Testing Programme, to ensure the implications are fully understood. • The donation of a fully equipped CRY Mobile Screening Van which will be used to transport machinery for our mobile screenings, and also adapted for the transportation of individuals (including wheelchair facility). • The design and development of a BAC accredited CRY Counselling course to be started in January 1999 specifically adapted for our families to enable us to develop an appropriate support network. • The launching of CRY’s Sports Cardiology Unit at St. George’s Hospital. • The funding of a CRY Administrator for this Unit to dovetail with the
organisation and development of our national ECG Community Testing Programme, and our Mobile Screening Programme. CRY is a self-funding charity that receives no governmental help. We owe our achievements entirely to the dedicated efforts of our families and our enthusiastic and energised support team.
ANNIVERSARY NEWSLETTER MAY / JUNE 1999 May 3rd was the 4th anniversary of CRY and it is perhaps appropriate that with this "Anniversary Update" we should be able to announce two crucial steps forward for our screening programme which is such a vital part of CRY's very proactive campaign. Since January we have been working towards appointing a central Administrator for our ECG Testing Programme, which will integrate with the CRY Sports Cardiology Unit at St. George's Hospital. Recently we completed the final interviews for this job which attracted the strongest response to any locally advertised position that St. George's Hospital has experienced. From an outstanding field of candidates we are absolutely delighted to introduce Jan Smith who is currently working as Administrator at the Department of STD's, Royal Free and University College Medical School. Although her department is relatively small (45 staff) it has an international profile, and extensive funding sources which Jan has managed. Jan will be starting on September 14th and will take over the complete running of all aspects of our ECG and Mobile Screening Programme, which we believe will allow them to dovetail more effectively, and develop to their full potential. Although salary demands were not an issue in this appointment, we have had to match Jan's current salary of ÂŁ25,000. Professor McKenna felt it was absolutely essential that we needed to be able to select a high quality candidate so that we could successfully launch our challenging new initiative. It is an extremely ambitious position for CRY to be funding but one that I know to be absolutely essential if we are to make the progress for which we have all been so impatient for so long. Our second bit of excellent and highly significant news is that Lynne Lewis has finally achieved ethical approval for her programme of ECG Testing in Schools in West Lothian which will allow us to test all 4,500 children of 15 + age group in her area. So far as we are aware a research project of this type has never been attempted before, and we are hopeful it will be the vanguard for many other permissions from District Health Authorities for CRY ECG testing of schoolchildren in their areas. Lynne's tenacity was fully tested and proven in finally achieving this goal, after a rollercoaster ride of 2 years when, despite the problems incurred through her personal battle with Cardiomyopathy, she finally triumphed through adversity to achieve this hugely important milestone for CRY. We have again managed to maintain our impetus with the media. As well as the local publicity for CRY which you are all achieving we had another spot on GMTV discussing our impending ECG Testing programme in West Lothian, were again featured on Meridian TV covering the tragic deaths of Lewis Marsh and Darren Chase, had lots of publicity on Radio 5 Live promoting our Pro-Am Celebrity Tournament at Sutton Tennis & Squash Club, as well as Lynne Lewis' 2 page article in Bella magazine and also a 3 page article in The Times colour supplement focusing on the tragic deaths of Ken Byrne and Nigel Edgar. After 4 years, hundreds of articles, thousands of phonecalls, and goodness alone knows how many Brochures, real progress towards our first steps in applying our screening programme is now becoming a tangible reality.
ELEANOR’S INTERVIEW WITH
Sylvia Salisbury one of our CRY Volunteer office helpers Eleanor:
When did you discover CRY?
I discovered CRY almost by accident. I picked up the wrong Sylvia: newspaper at the newsagent. I didn't realise till I was home reading it. The paper was the Daily Express, running an interview with Gloria Moss. I knew as I read what Gloria said, that what happened to Laura had happened to Ruth. This was January 1998, Ruth died in October 1997. Eleanor:
What do you do for CRY at the moment?
My job at I feel that if there was a standard procedure for postSylvia: mortems after a sudden unexplained young death, and that the CRY is to take charge of all the onus was on the coroner to explain why the death occurred (rather incoming and out- than to exclude foul play) then the true statistics for S.D.S. would come to light. Proper investigation of the heart tissues, should going merchanbe the rule, and not the exception. dise, to answer the all-important telephone, and last, but not least, to be Chief Filing Clerk. Eleanor: of?
When your daughter died what were you told she had died
When Ruth died, we were not told anything at all at first, which Sylvia: was awful. Later on, the pathologist lab said it was an Epileptiform Seizure. That sounded completely wrong to us, but we were in no state to argue. My husband Tim and I are quite well informed medically, and we just couldn't accept that we had missed epilepsy. Ruth showed no signs of epilepsy, and there weren't any strobe lights at the disco she had been at that evening. Eleanor: Do you believe the medical world pays enough attention to cardiac problems in young people?
Sylvia: I don't believe that the medical world pays much heed at all. It is aware of these needless young deaths, but it seems to be unwilling to take responsibility for prevention on a large scale. Eleanor: What do you think needs to change to help both patients and doctors to become more aware? I feel that if there was a standard procedure for post-mortems Sylvia: after a sudden unexplained young death, and that the onus was on the coroner to explain why the death occurred (rather than to exclude foul play) then the true statistics for S.D.S. would come to light. Proper investigation of the heart tissues, should be the rule, and not the exception. I feel strongly that if the true numbers were known, that doctors would take more notice, and that a state screening programme could begin. Eleanor:
How do you manage to take on all the work you do for CRY?
It would be great if CRY wasn't needed in the The work that I do Sylvia: future, but I hope we will become a household at CRY is important to me, to give something back to the peo- name, known by all in the medical profession. ple who helped us, and to help those people who need CRY. I would love to do more, but I have very little free time, as I am a part-time lab technician, a landlady to college students as well as Mum to Tom, who has diabetes.
Eleanor:
What would you like to see happen to CRY in the future?
It would be great if CRY wasn't needed in the future, but I hope Sylvia: we will become a household name, known by all in the medical profession.
Theme - School
Photo-Call WHERE ARE THEY WOMBLING TO?
... ...... ........ ...... .... TEACHER: M U M M Y, YOU`VE PUT TEACHER WAS ASKING ME YOUR SHOES ON THE TO D AY IF I HAVE A N Y B R O T HWRONG FEET ERS AND B O Y: BUT THESE A R E SISTERS WHO WILL BE COMING THE ONLY FEET TO SCHOOL T H AT`S NICE OF HER TO TAKE SUCH W O O DAN INTEREST DEAR, WHAT DID WORK SHE SAY WHEN YOU TOLD HER TEACHER: WHAT YOU WERE AN ONLY CHILD? ARE YOU MAKING? B O Y:A P O R TA B L E SHE SAID “THANK TEACHER: A P O R TABLE WHAT TEACHER: SARAH IF IT TAKES TEN MEN TWO B O Y: I DONT KNOW D AYS TO DIG UP A LARGE GARDEN, HOW LONG SIR I``VE ONLY WOULD IT TAKE FIVE MEN TO DIG UP THE SAME MADE THE HANDLE GARDEN? SARAH: NO TIME AT ALL MISS, THE FIRST TEN MEN HAVE A L R E A D Y DUG IT UP!
IN MEMORY OF IAN BOWEN Our great junior runner Michael Cousins aged 11 completed The Junior Great North Run for the 2nd year in a row in Ian`s memory and raised a fantastic £150.00 for CRY
ANDY GARD MEMORIAL FUND The Rubin Foundation based at Colchester High School have sent us a great cheque for £25.00 from a business venture
PHILIP ABRAHAM MEMORIAL FUND Form Scott 1 at Hardley School Southampton, nominated CRY as their chosen charity. The Form made posters and sold links for a paper chain at 10p each. The finished chain streched halfway around the Gymnasium, and raised a brilliant £37.00 for CRY
WORDSEARCH
can you find these words?
SCHOOL TEACHERS BREAK WORK REPORT SUMMER
OUR FUNDRAISERS JEREMY COLE MEMORIAL FUND Eastbourne Rotary Club held 3 concerts in Jeremy`s memory. CRY was mentioned to the capacity audience for each of the concerts, a presentation board was placed in a prime position in the theatre foyer, and local press were present. A lot of awareness was raised and the wonderfull sum of £600.00 was given to CRY. Eastbourne Academy of Dancing also put on a show and split the proceeds from the sale of programmes at The Congress Theatre, CRY benefited from a super £100.00 donation. Making a brilliant total of £700.00 Students from The Harper Adams Agricultural College in Shropshire
Roy Ball seen here with Students from The Harper Adams Agricultural College
have been busy fundraising for CRY. Although it is the biggest Agricultural College in the country it is relatively small compared to others. Despite this they are glad to announce that they have raised over £5,000 for good causes, and have decided to donate a fantastic £500.00 to CRY for core funding. Roy Ball went along to present the college with their Special Certificate.
IN MEMORY OF MIKE SCOTT
Claire Jobe, Helen Jenkinson & Donna Bedford seen here with “George” from Rainbow & other students
Claire Jobe and Emma Campbell
The Sunshine Mother & Toddler Group, Dibden Purlieu, Southampton sold toys donated to them from a member of the church, and Karen Baddour has sent us a great cheque for £70.00 for CRY core funding
seen here some of the children at the group
SUTTON TENNIS AND SQUASH CLUB RAISED £52.20 FROM THEIR JUNIORS V SENIORS FOOTBALL MATCH FOR CRY CORE FUNDING O n the saturday b e fo re C hristm as,Junio r and Se nio r m e m b e rs fro m Sutto n Te nnis and Sq uash C lub lo c ke d ho rns in the b attle fo r the tw ic e ye arly Fo o tb allM atc h.
The Se nio rs w e re ke e n to ave nge the ir pe nalty sho ot -o ut de fe at last Easte r,so they fie lde d a stro ng line up inc luding m e m b e rs o f the M e ns First Te nnis Te am .
The Junio rs to o k an e arly le ad,b ut se ve raltac tic a lsub stitutio ns b y the Se nio rs fo rc e d the sc o re to 2 -2 at the inte rval. Re fule d b y the ir half tim e o range s,the Se nio rs fo und ne w e ne rgy and m o ve d a go alin fro nt,ho w e ve r,the ir m om e nto m w as c o unte re d b y the Junio rs w ho ,de spite the ir re lative lac k o f e xpie rie nc e ,w isdo m ? and size ,c arrie d aw ay the tie to w in 6 -3 and re tain the title .
The m atc h w as w e llsuppo rte d,w ith p artic ipants ranging fro m 8 to 50 ye ars o f age ,and 4 fe e t to 6 Fe e t 6 Inc he s in size . The re w as also a go o d “fan b ase ” to suppo rt,and the e ve nt raise d o ve r £50.00 fo r C RY.
£1,500.00 HAS BEEN RAISED IN MEMORY OF DAVID CROSS Jo and Charlie Cross (David`s Mum & Dad) have donated to CRY a wonderful £250.00. This is in memory of David who would have been 29 years old on 6th April. Michelle Holmes (David`s friend) handed Jo a super £100.00 in memory of David. Jo tells us Michelle has excelled in collecting money for CRY for various fundraisings.
David seen here at a party in Singapore in 1996
Siemans Power Generating Ltd gave CRY a great £150.00 for David`s Fund, after Charlie (David`s dad) approached them. The money will be used to help provide ECG screening facilities in the North East. Alan and Heather Dearman from Guernsey are friends of the Crosses. Alan and Charlie were schoolfriends, and Alan was Best Man at Charlie and Jo`s wedding. Although they have not seen each other for years they have kept in touch. Jo writes “I was amazed and delighted when I opened the letter and found a cheque for £1,000.00 for David`s Memorial Fund”. This makes a fabulous total of £1,500.00. The Cross Family - Tony, Jo, Charlie & David
WIMBLEDON FUN DAY at The All England Lawn Tennis & Croquet Club on 9th April raised £1,514.70 Practicing our co-ordination skills!
Can you spot the future Wimbledon Champion?
You can`t catch me!
Tony at the CRY stall
CRY`s Trustee Ron Presley and grandsons
Our exhausted CRY helpers
The Bond Bouncers gave us another brilliant skipping display
One to one tuition!
Boys can skip too!
Ours !!
Francis & Ron Presley our wonderful organisers
MICHAEL PENTLAND RAISED £1,208 FOR THE
ANNA COMBES MEMORIAL FUND COMPETING IN THE GREAT FLORIDIAN TRIATHLON Michael Pentland completed The Great Floridian Triathlon in Anna`s memory and raised the awesome sum of £1208.00 for CRY. After months of training Michael was ready for his incredible challenge - A 2.4 mile swim followed by a 112 mile bike ride and then a 26.2 mile run.
Michael in his CRY Shirt
Michael got out of bed at 5am on race morning had the usual breakfast of bagel and banana and set off to Lake Minneola for the start of the race. After checking over his bike and having his number painted on his arms and legs it was race time. “It was 07.30 and someone was singing the national anthem, (the American one, not God save the Queen), and we were off”. Writes Michael “The first 5 minutes were horrible. There were 1,200 people trying to make their way out of a 100 foot wide start gate. The front was described to me as “terribly brutal” and the back was “no smooth ride either”. Michael found the second half of the swim “quite relaxing” and “almost enjoyable”. Transition number one. No time to rest just fuel up on fluids and bananas and change into bike clothes and head off for the 112 mile bike ride! After mile 35 it was time to stop at the special needs station, more bagels and a specially imported bag of salt and vinegar crisps! “The next 30 miles or so were fairly unadventurous and then, just when it seemed like it was all over, the bike course threw up a little surprise!”. “The final 20 miles were not only very hilly but on this occasion, were straight into a fierce headwind. The concern here is not so much the pain and the loss of time as the concern as to what this is going to do to any remaining running ability”. After around 8.5 hrs since the start of the race Michael reaches transition number two a 10 minute rest and up and away for the 26.2 mile run! The first 6 miles are very painful and the pace at one time becomes little more than a walk and Michael is feeling sick and dizzy. At mile 22 he winds back up to race speed until “Someone shouts to me there are 400 yds to go. This is what I have been dreaming of for the last 4 months. There is a smile on my face which feels like its about 3 feet wide People are cheering and clapping. The Michael crossing the announcer reads my name. Someone holds up a finfinishing line after a gruelling ishing tape and I run through it with my hands in the 14hrs 38mins 26secs air and someone puts a medal round my neck and tells me I am now An Ironman!. “I have met a lot of great people and I have done something which I know will be with me for the rest of my life” What a fantastic achievement! Thank you Michael and also to the sponsors: The Management and employees of Gardline Surveys Limited, Jeremy Hawke , Nigel Pentland, and Marion Tucker, without whom all of this would not have been possible
OUR FUNDRAISERS David Rothwell from The Heywood Lions Club held a CRY Awareness week at the Darnhill Library, Heywood. The week consisted of a Coffee Morning, Afternoon Tea, a plant sale, cake stall, an afternoon of fun for local children, and a childrens CRY painting competition. Special Thanks to The Heywood Lions, David Rothwell, Ann Jones and Mandie Boswell for all their efforts in raising a Brilliant £200.00 for CRY core funding.
PHILIP ABRAHAM MEMORIAL FUND The Hamble Group Ltd have an employees charities fund which makes donations to good causes as well as offering financial assistance to their workers, the Charities Commision nominated CRY to receive a special £300.00 donation
IN MEMORY OF IAN MERCHANT Ian`s Mum & Dad (Barbara & Dennis) have emptied their collecting box again and “with a little top up” amounted to £125.00, they also wanted to donate their CRY Dinner cheque “which we both feel CRY should have anyway” making a wonderful total of £175.00
JOHN MARSHALL MEMORIAL FUND Staff at the Durley Hall Hotel Bournemouth have been fundraising for CRY and have raised a brilliant £250.00 in John`s memory
CRY CORE FUNDING Patron Mark Cox attended a dinner at the Chigwell Lawn Tennis Club, Where he was presented with a great cheque for £100.00
Bulletin Board SPECIAL THANKS TO BOB BOOTH FROM LANIER WITHOUT WHOM THIS UPDATE WOULD HAVE BEEN IMPOSSIBLE
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.
NEW ARRIVALS Congratulations to CRY `s Cardiologist Dr Sanjay Sharma and wife Seema who gave birth to Shivani (a baby sister for Anoushka) born on 30.05.99 weighing 7lbs and to Roy and Gill Ball a grandson Morgan Kenneth Andrew Williams born on 06.06.99 weighing 8lb 3oz also to Kenny and Maralyn Bowen CRY`s Northern Representatives who have just had their first grandchild - Callum Ian born on 16.06.99 weighing 8lb 7oz
Are you up for THE CRY COMMANDO CHALLENGE? This years CRY Commando Challenge will be on October 3rd at Woodbury Common in Devon
This is definitely my idea of FUN!
If you would like to register your team please contact Mike Foster Co-ordinator of CRY Commando Challenge on 01329 231734 Teams need to be a minimum of 3 and a maximum of 5 people
More and more people are using Mike Foster - foster1m@aol.com E mail as a fast and convienient Caroline Gard - caroline@cryoung.freeserve.co.uk way of communication. Jo & Charlie Cross - chascross@compuserve.com Roy Ball - royandgillball@selcroftavenue.freeserve.co.uk If you would like to be put on our Adrian Woodhead - adrian@woodhead88.freeserve.co.uk list, please E mail us with your Nigel & Jenny Cole - nigel.cole1@virgin.net details. Anne Jolly - jollyjon@netcom.co.uk E MAIL CONTACTS
Harry Hindle - capt.harry@tesco.net