News, V iews & Do’ s - ♥ Meet our Representatives ♥ Newsletter ♥ Kids for CRY ♥♥♥♥♥♥♥ Julie’s Interview ♥ Jokes Corner ♥ Puzzles ♥ Jan`s Report ♥ Mike`s Report ♥ Our Fundraisers ♥ Raising Awareness ♥ Bulletin Board CR Y SUBSCRIPTION AND / OR DONA TION FORM Name............................................................................................... Address............................................................................................ .....................................................................Post Code................... Telephone ........................................................ Date...................... Annual subscription for 6 bi-monthly updates - £3.00 Please use the enclosed FREE POST envelope Issue No. 25 May / June 2000 CARDIAC RISK in the YOUNG BI-MONTHLY UPDATE
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Issue No. 25 May / June 2000
CCARDIAC
RRISK in the
YYOUNG
BI-MONTHLY UPDATE
MEET OUR REPRESENTATIVES
IN SUFFOLK - IT`S KATE & ROBI FOXWe live in the small Riverside Town of Woodbridge in Suffolk. We have lived here for 15years and until August 1998 we were a normal happy Family. Sam, our eldest daughterwas 15 and twins Mark, and Laura, were 13.
We had just returned from a hastily arranged French Holiday, which had turned out to beone of the happiest and most relaxing holidays that we have had. We were at home whenwe decided to go and play tennis, so Mark and Laura had gone to get ready.
Mark found Laura lying on her bed. We tried to revive her, and the Ambulance Paramedicsworked relentlessly for what felt like hours, but they weren't able to bring her back.
Her death has had a devastating effect on thewhole family and we are still trying to come toterms with the fact that she has gone.
Laura had always been very fit and healthy, finding physical sports came easy to her. Fromher first year at school she had won running races,in fact she had won the 100m and triple jump ather school sports day just the month before herdeath.
Parents bring up their children teaching them whatis dangerous and what is safe. You never expectthat your perfectly healthy child will simply lay ontheir bed and die for no apparent reason.
The initial post mortem could not establish thecause of death. After extensive tests lasting anagonising 5 weeks, the final Coroner`s verdict was"probably aspiration of vomit as the result of anepileptic fit".
For lots of reasons we were convinced that this could not be the case, but at the time ourgrief was such that we accepted it, as opposed to an "Open verdict". We had never heardof SDS, or the research being carried out at St George`s.
About 2 months after Laura's death we were approached to take part in research with StGeorge`s, which resulted in our meeting with Professor McKenna. He confirmed that Lauraalmost certainly died as a result of Long QT Syndrome.
We were put in touch with CRY and the overwhelming sense of relief and comfort we tookfrom finding people who understood, cannot be put into words. This was tinged with sadness that there were so many other people suffering in the same way as our family. Wedon't know what we would have done without their support.
Our aim with CRY is to raise awareness of the conditions associated with SDS and provideparents with the option of having their children screened. In this way we may just be ableto prevent one other family from suffering the interminable grief that we have felt atlosing a child.
NEWSLETTERMay / June 2000
CRY celebrated its 5th Birthday on May 3rd - and it is perhaps appropriate for us to take amoment to reflect and acknowledge what an amazing amount has been accomplished in thistime and what an incredible 5 years it has been!
We have to date raised the astonishing total of £878,950 with which we have; purchased theEchocardiogram machine in use at St George's; purchased 21 ECG machines for use in localcommunities (in the last 2 years Marquette have sold more machines to CRY than any otherpurchaser!); introduced the first ever proactive ECG testing programmes into local communi-ties in the UK; purchased a mobile cardiac screening van and introduced the first ever mobilecardiac screenings into local communities in the UK; designed a CRY Counselling Course totrain our staff and families who have suffered a tragedy to be able to help others cope. It issobering to remember that we have managed all this without a penny from Governmentwho have again turned down our annual application for Section 64 Grant funding.
In the last 2 months CRY ECG machines have been ordered by the Scotts in Beadlam in memory of Mike; the Jolly's have funded two ECG machines in the town of Brentwood in memory of Ashley; and the Cole`s their second ECG machine, in memory of Jeremy, into theirGP surgery for the benefit of the community of Eastbourne.
Through the intervention of John Jolly we have also been donated 10 excellent computers byJohn`s employer, Ford, which will be used to help network our Divisional Representatives andfurnish them with their own PC's.
In June Caroline Gard (Andy Gard Memorial Fund) and Sally Reid (Lewis Marsh MemorialFund) launched CRY`s first ECG Community Testing Programmes in their respective countiesof Essex and Berkshire. We have also done 2 more Mobile Cardiac Screenings with our inde-fatigable Field Captain Harry Hindle superbly organising sessions in Durham in memory ofSarah Woodhead, Steven Lamb and David Cross, supported by Jo Cross and Kevin Alder andtheir team - and in Preston in memory of David Staff and Neil Wickers supported by theWickers and Staff families and friends.
CRY can now boast another supporter in a high place with Maureen Ward, our DivisionalRepresentative for Wales, being made Mayor of Tenby for an unprecedented 4th time! I wasprivileged to be invited for the "making" ceremony which was very Welsh and very special!Congratulations Maureen and more power to your elbow for CRY - you will be able to glideover all the last hiccups of your ethical approval problems by pulling rank now!
Our last Counselling Training weekend was the toughest yet with a move forward from basiccounselling skills into the confrontation of grief and a lot of difficult and challenging introspec-tion making for some gruelling moments. Because the course is residential the friendship andsupport generated make it very special, and I hope all students feel as I do, how very worthwhile the experience is. I would like to take this opportunity of again thanking ourChairman Dr Greg Whyte for organising the lecture room at the University of Wolverhamptonfor us, which has mitigated our expenses and greatly facilitated travelling arrangements.Information for applicants for next year`s course will be available after September 1st. Placeswill be limited to 20 students. Please send an SAE to the office for details.
So with a list of achievements of which we can be truly proud, CRY now moves forward into themillennium to confront our most ambitious proposal yet - the instigation of our SportsCardiology Unit in conjunction with St George's Hospital. This is a crucial project which will notonly raise CRY's profile and projection of services we offer, but most importantly provide theanchor for the development of our cardiac screening programme and all research initiatives.
JULIE`S INTERVIEW
WITH
FrancesPresley
CRY`s Wimbledon Funday
Co ordinatorJulie How did you first hear about CRY?
Frances Through Alison's very early contributions to 'Surrey Tennis' mag-
azine to make people aware of the, hitherto, unknown dangers of
Sudden Death Syndrome.
Julie How have you been involved with CRY?
Frances Helping to organise the Wimbledon 'FUN' day and also through
my husband being the first Chairman of CRY.
Julie How long haveyou been involved with CRY?
Frances About 8 years.
Julie Have you done any fund raising for CRY?
Frances Yes, with the Wimbledon 'FUN' day.
Julie What is the Wimbledon Funday?
Frances The 'FUN' day came about because our local Short Tennis Club
saw the original Skipathon information and decided to take part.
It involved the participants finding sponsors, and as our club
members are 5 - 9 years old and we were holding the event in
December Mums did not take too kindly at that time of year to
finding sponsors. The event was a great disappointment.
When talking about it later we decided to get the children to raise
Alison always says that her aim is not to be
in existence because that will mean that the
Charity will have achieved its aims of making
everyone, including the medical profession, aware
of the necessity for screening.
money by playing short tennis themselves. One of our helpers
suggested asking the All England Lawn Tennis Club if we could
use the indoor courts one morning. The Club kindly agreed and
the event grew from that. We ask children to come for two hours
to play 'fun' short tennis, tennis, ball activities and skip. To
close the session there is a display of skipping by a local school.
Julie What ages can children come along to the Funday?
Frances 4 - 12 years.
Julie What date is the Funday?
Frances Usually the Friday after Easter, but it is rather dependent when
Easter is and how it coincides, or not, with the school holidays.
This year was very difficult as Easter was so late.
Julie How much money has been raised by the Wimbledon Funday?
Frances Nearly £10,000.
Julie What do you think CRY could be in the future?
Frances Alison always says that her aim is not to be in existence because
that will mean that the Charity will have achieved its aims of
making everyone, including the medical profession, aware of the
necessity for screening. I totally agree with that. That is in the
long term. In the short term CRY should, not could, be the cata-
lyst to raise awareness in as many places as possible.
Theme - Tennis
Photo-Call
wHAT`S THIS
LITTLE CHAP
UP TO?
. . . . . . . . . .
. . . . . .!
can you find
these words?WORDSEARCH
CRAIG RAMPTON MEMORIAL FUND
Joy Powell has been extremely busy
organising fundraisings and giving talks
about CRY to schools. Pupils from
Barbourne Prep School (where Joy used
to work) held a Christmas Bazaar and
raised a wonderful £100.00. Beth &
Jamie (holding the cheques) stood on a
street corner during Victorian Week and
played their recorders raising a brilliant
£28.00 in memory of Craig. They are
seen here presenting the cheques to Joy.
IN MEMORY OF DAVID CHAPMAN
The Wensleydale School (David`s old School)
have been busy for CRY. A memorial service was
held in memory of David where colleagues talked
about him and his favourite music was listened
to. A non uniform day was also organised raising
a fantastic £225.67, and a group of post-16
students planned a computer competition for the
pupils of the school and raised a brilliant £16.14
making a wonderful total of £241.81 for The
David Chapman Memorial Fund
Hello again from St George's. The production of theBrochure is always a good marker for me in terms oftime passing, and it has been a busy 2 months in theHospital.
In the last 2 months, (in brief) CRY has had twomobile screenings and two ECG testing sessions. Through the fundraising efforts of threefamilies (the Scott's, the Jolly's and the Cole's) threemore ECG machines have been placed into medicalunits and surgeries. We've also made progress withSports Cardiology and a presentation on the way forward is about to be given to our Trustee Board -depending on the print run, it might just have finishedwhen you receive this!
Echo - As you might be aware, CRY provided StGeorge's with the permanent loan of an ECHOmachine a number of years ago. I am pleased toinform you that the ECHO received a major softwareupgrade in May of this year, bringing it back up tospeed. The upgrade was made possible by theHospital funds, quite an achievement in the current financial climate. Harry Hindle, CRY's FieldOfficer inspected the ECHO and has given a big "thumbs-up" to the end result.
Finances - I thought it might help to confirm arrangements regarding the financial guidelines formemorial funds. If any family chooses to link in with CRY, funding raised in memory of a child underthe banner of CRY should be forwarded to the Head Office on a regular basis. The money will beplaced into a Restricted Fund (ring-fenced) if requested, and used as directed by the family / CRYcontact, with 25% being deducted to support core funding. Any sum of money received by CRY canbe ring fenced for CRY`s screening programme. Of course, I feel I should stress that the greatermajority of CRY contacts do forward money on a regular basis, but the Charity Commission is quiteclear that individuals who link in with Charities should not retain separate accounts for fund raisingpurposes. It places both the Charity and the individual concerned in a vulnerable position and it isnot possible for CRY to support such a system. CRY will offer ‘Ring Fenced’ funding for as long asit can realistically operate a growing number of accounts. The topic of forwarding payments is acommon area of concern within charities and one which relies on the support of volunteers.Facilities developed by CRY are made possible by your fund raising efforts - so please help us tokeep up to speed with what you are doing. If you would like to discuss this issue in further detail,please call me.
The level and breadth of work generated by CRY is constantly developing, and anyone who feelsthey are receiving a slower response than they would like, please accept my apologies. We do drawup priority lists, but these are very often over taken by dealing with situations that need immediateattention. At St George's, our first responsibility is to ensure that any distressed family who contactsCRY receives proper attention and appropriate support, but it does mean that other work prioritiesthen shift to accommodate unplanned work. It's always a challenging area, as many contacts willfeel that their work is key too! From speaking with many of you, I also know that there is a commonempathy for anyone coping with the sudden loss of a child and I hope you will understand thatbecause of our remit, we cannot always respond to all parties as quickly as we would like.
Please feel free to call me at any time regarding our work here in the hospital on 020 8 725 5098.For information, anyone writing in should use the full address which is: Jan Smith, CRY Administrator, c/o Cardiological Sciences, 2nd Floor, Jenner Wing, St George'sHospital Medical School, Cranmer Terrace, Tooting, London SW17 0RE. Thank you!Kind regards from Jan.
JAN SMITH CRY`S ADMINISTRATOR REPORTS
FROM CARDIOLOGICAL SCIENCES
ST GEORGES HOSPITAL MEDICAL SCHOOL
2000 LONDON MARATHON
Income from this year's LondonMarathon is £17,306.41p so far, madeup as follows:Donated place runners £7,001.83pGolden Bond runners £10,304.58pFive out of eleven donated place runnersand 21 out of 30 Golden Bond runnershave yet to make their remittances,which are due by the end of this monthin order to feature in calculations forincentive prize awards. Official LondonMarathon Finishers watches are awarded to the top 5 male and top 5female fundraisers. It is expected thatthe final amount raised will be in theregion of £40,000.00p.
CRY COMMANDO CHALLENGE
This year's Commando Challenge is scheduled for 7 October and thefinal date for applications is 31 August. However, if there has been in sufficient response by 31 July, the event will be cancelled. A videotapeof last year's event is available at nominal cost from Central Office, sowhy not order one and see what it is all about for yourself. It is a greatday out and if you would like to enter a team, get in touch with CentralOffice as soon as possible to avoid disappointment.
And Finally
Following the relocation of CRY to the new offices in Tadworth and thesubsequent rationalisation of resources, my formal position with CRYhas become redundant and my employment with CRY will terminate atthe end of July. I have enjoyed working with CRY and seeing it grow overthe last few years and hope it will continue to thrive. My thanks to thoseof you that I have had contact with, for your help and sincerity. I wish youall well for the future.
Sincerely,
Mike Foster
MIKE FOSTER CRY`S PROJECTSMANAGER REPORTS
CONGRATULATIONS MAUREEN- MAYOR AGAIN
FOR THE 4TH TIME!
On a warm sunny day in April, 5 years ago, I wasbusy mowing the lawn, everything was great, andthen in a matter of seconds my world fell apart. Astranger was standing there telling me my belovedson had 'dropped dead' in work. I won't go into whathappened after as many of you will have beenthrough the same horrific times. 12 months after Iheard of CRY and Alison, I have to say she was a life-line in those early days and she understood that Ifelt screening was so important. To me if I could saveone young life Caradoc's death would not be in vainand that is when I started working with CRY. I knowmany of you are working hard out there and some-times get disheartened when things don't go accord-ing to plan but remember ‘when you hit a brick wallthere is always a crack to get through on to the nextroad’ so keep plodding on and at least we are making peopleaware of what'sgoing on out there.One day I am surewe will all have ourwish and screeningwill be the normalroutine done inevery school inBritain. As the mother of a SDS victim I will keep onraising awareness ofthis silent killer.
Maureen Ward.611 Mayor of Tenby(recently madeMayor again for the4th time)
This is about running a Marathon, but it is also about more important things. The worst
thing that can happen for parents is that their child dies before them. Many of the people
who read this will know the pain of that.
A few years ago I was told that Dominic, the son of friends of ours, had died suddenly after
a cross-country run. To be honest I can't remember the medical term for the heart defect
he had but, like many others, an appar-
ently fit and healthy child had died prema-
turely and completely unexpectedly,
because of a heart defect. I didn't really
know him - I'd only seen him a couple of
times - and yet I still think about him now,
from time to time. I know that his parents
think about him constantly.
It would be wrong to suggest that Dominic
was my only reason for running the
Marathon. I've always liked running, since
I was a kid, though there have been long
periods when I haven't bothered to do any. But there is a difference between running - or
'jogging' as some people call it - and doing a Marathon. I've only done two Marathons - in
London this year and the year before - but also a few half Marathons and 10 mile runs and
so on.
Dominic was certainly a motivation. If you are going to do something painful like running a
Marathon, then you might as well use it to get money out of people for something worth-
while. (It works like this - "Look! All you're doing is giving me £5. I'm putting in blood, sweat
and tears. Give me your money".) But there is another side to this - if you've committed
yourself to raising money for CRY (or whatever the charitable concern is) it makes it more
difficult to back out. And there will be times when you want to. Frankly, no-one in their right
mind wants to be doing 5 or 10 mile 'training' runs when it's pouring down with rain and you
could be in the warm at home. You will especially want to back out when you get to that
cobbled bit just after 22 miles by the Tower of London.
On the other hand - just in case what I've said has put you off - there are actually some rea-
sons in favour of doing Marathons.
1. You get a sense of achievement simply out of completing them.
2. You get fitter because of the training you have to do just to finish.
3. There is a simplicity about the process of running that allows you to switch off from the
complications of the day.
4. There is a comradeship amongst runners, which is particularly apparent at Marathons.
People are very supportive. (I must stress that this does not include those who can run
Marathons in less than 2½ hours - they're abnormal and probably not even human. And no
- of course I'm not jealous!)
5. You can use Marathon running to raise money for CRY.
RODGER WHITE HAS RAISED£2,320.20 IN MEMORY OF
DOMINIC O`LOUGHLIN
Roger White seen here with
running partner Les Gardner
BY RUNNING IN THE 2000FLORA LONDON MARATHON
I was actually asked to write something about running the Marathon itself. I will say some-
thing about that, and then finish with some advice about preparing for the Marathon - which,
I am confident, you will now want to do.
The main things to say about Marathons are:
· It's a very long way (26.2 miles). As one of my colleagues put it "that's further than I could
drive my car!"
· Many people get caught up with the enthusiasm of it all and run too fast at the beginning.
Believe me, this is a bad idea.
· You will get a great deal of support. Unfortunately, a lot of this comes from people in pubs,
which is where you want to be.
· At the bigger Marathons (like London) there are thousands of runners, so try not to get in
each other's way.
· In the London Marathon there is a loop in the route, which means you meet the really fast
runners going the other way (fortunately on the other side of the road). They have 4 miles
to go you've got 13. Very depressing.
· You may find, during the run, that you are passed by someone wearing a rhino suit, or
several people (running in step!) dressed as centipede. Try not to get cross about this.
Now for the advice about doing a Marathon:
· If you think you can do a Marathon then you probably can. If you think you can't, you may
still surprise yourself.
· If you have any doubts about your level of health and fitness, or you have done no run-
ning or any other vigorous sport for several years, you should take medical advice before
undertaking a Marathon.
· You need to do a lot of training if you want to finish, and still be able to walk the following
week. You also need to build up the length of your runs, and to vary the type and speed of
running you do. Most sports shops and newsagents have running magazines with advice
on this. If you are successful in an application for the London Marathon you will also get
"Marathon News" which tells you about this. If you haven't run before, start slowly and
gradually. Don't expect too much at first and build up to the final day.
· If you're useless with money, like I am, secure the services of a fund raiser/accountant (in
my case, my wife).
· Get yourself some good running shoes.
· Make sure you eat and drink properly. You need to take in a lot of fluid (not alcohol!), and
plenty of carbohydrates (pasta, bread, potatoes). For the diet conscious, don't worry -
you're more likely to lose weight than gain it. If you smoke, try to stop, or at least reduce.
· If you can, get a running partner. This is helpful to keep you motivated. Try to get some-
one a bit faster than you. Try not to hate them for it. Alongside this article is a photo of my
running partner, Les and me. We look happy because we've just finished the Marathon.
The pain was already fading. Running the Marathon was for Dominic, and other children
like him. But it was also for me.
A FANTASTIC £9493.60 HASBEEN RAISED
Ashley Jolly was a bright fit teenager who was founddead in bed aged 16. The official cause was noted asasthma - although he had never suffered an attack.Since his death on 28.05.98 the Jolly family have triedto find the real reason behind their tragedy. After considerable research they are convinced he was avictim of Sudden Adult Death Syndrome. Their goalhas been to raise enough money to buy an ECGMachine and test children of secondary school agefor heart problems. With their team of helpers theyhave organised several fundraising events, and havepersuaded Brentwood and Ongar M.P Eric Pickles tobe on their side.
Ashley seen here at
a Go-Karting event
8 participants from the Jolly Fund Raising
team took part in the annual London to
Brighton Bike Ride including John & Philip
(Ashley`s Dad & Brother) pictured left; Also
Sandra, Peter, Colin, Mark, Matt & Barry put
lots of effort into their cycling, and even
more into their Fund Raising. A fantastic
£1020.10 was collected.
The Brentwood Fun Run had
good support in memory of
Ashley with Denise, Nicola,
Hayley, Matt, Sandra, Philip
& John all completing the 3
mile course and raising a
brilliant £473.50
Anne Jolly (Ashley`s Mum) works in the IT
department of Warley based firm
Cleanaway. Following a suggestion from her
boss Michael Curran, IT staff organised a
sponsored windscreen wash in the firm`s
car park. A super £299.00 was raised and a
further £100.00 was donated by the
company. Anne said “I was overwhelmed by
the generosity of the staff”
Ford of Britain Trust
donated a brilliant £250.00
in memory of Ashley
A Barbeque was organised, it was held on a
lovely warm September evening. The Jolly`s and
their neighbours decorated the mews with
fairylights and a CRY banner, so many people
came along to support the event. Local companies
were very supportive donating a Marquee, raffle
prizes, including a basket of fruit from a local farm
and tickets for dinner at a chinese restaurant. The
evening was a great success and raised a
fantastic £523.00 in memory of Ashley.
Ashley`s grandmother was keen to
raise money for Ashley`s Fund and held
a raffle at the Probus Club which she
attended. The Jollys were all
overwhelmed at the generosity of the
members. They were concerned when
they read the CRY literature and
realised how conditions of the heart can
affect apparently fit and healthy young
people and raised a super £213.00
IN MEMORY OF ASHLEY JOLLY
FORD MOTOR COMPANY DONATE 10
COMPUTERS IN MEMORY OF ASHLEY
'Anne's husband John Jolly works at The Research Centre of Fords at Dunton.When Fords were in the process of updating their computers John made enquiresto find out what was happening to the computers that were being replaced. Johnwas aware from the CRY Brochure that they were in need of office equipment andwondered if they stood a chance of acquiring any of these computers. After makingenquiries John found the relevant department who fortunately were able to help.They requested a letter from CRY detailing their need for these machines and Alisonpromptly obliged. The wheels were in motion and fingers and toes were crossed thatthe application was successful.'
The CRY office received a call from Fords at 10.30am saying “you have been donat-ed 10 computers but you must collect them by 5pm to-day to ensure you get them”By one o'clock Tony and I were ready to make the journey to South Ockenden inEssex. Having been given precise instructions through the Streets of London, wedecided to take the 'stress free' route around the M25. We settled into a comfortablejourney in the middle lane, but soon discovered our conversation had betrayed usand we were no longer on the M25, but the M20! We decided France could wait foranother day, turned round, and headed back to business. Unfortunately, the rushhour seemed to have started early today and we promptly found ourselves virtuallymotionless. 2 o'clock, 2.30, 3 o'clock and still we had not even reached the Thames!The rain came down harder, things were looking bleak, but at least we had plenty oftime (we had been told the offices closed at 5 p.m.). We decided to check everythingwas going to plan the other end. Oh dear. Offices closed at 5 p.m., but securityclosed at 4 p.m., so no machinery clearance could be given after 4 p.m.. The racewas on, but we weren't going anywhere fast, and every minute counted. As we cameout from under the Thames, we were on track for 3.50 p.m. No problem - the direc-tions were straight forward from here!! Unfortunately, the land marks did not seemto be adding up and although a couple of brief encounters assured us it was 'justround the corner', it clearly wasn't. Tony's mobile saved the day. I managed to holdthe security guard on the phone and talk us in from about a mile away. The secondswere now counting, and we could not be sure if clearance could be given, or if wewould have to make the same journey another day. We opened the door of Doc. 8and pursued our contact Jenny. Within moments racks of computers were wheeledover to us, loaded onto the CRY van, a slip was signed and we were on our wayhome with an encouraging farewell message from the security guard, '10 of the last15 computers to leave this place didn't work and were bought back'!
Mike Coleman (CRY`s IT specialist) was eager to see if they all worked (and so werewe!) After a small upgrade he said ‘all 10 were excellent machines and we were verylucky to have them’. These machines will be so useful to CRY, to extend our networkand to be able to share information more effectively. We are extremely grateful toFords for their very generous offer, and to the Jolly`s for thinking of CRY.
Anna was truly unique. A bright, attractive, intel-ligent, sophisticated, 26 year old with her lifebefore her, who was preparing for her imminentwedding .
This photo was taken of Anna as she was cross-ing the finish line in the 1998 Bath 1/2Marathon. Radiant. Happy. Successful. Withinminutes she was dead and at her inquestProfessor McKenna reported that she was prob-ably a victim of Long QT.
There can be very few photos that so explicitlyexpress the brutality of Sudden DeathSyndrome as this one. One minute a beautifulyoung athlete, brilliantly alive, and then a lifethat is over.
The family buried Anna in her wedding dress.Her bouquet was used for the wreath on her cof-fin. The wedding flowers used in the church forher funeral.
An exhausting six month investigation by Anna’sDad Phil and Fiancee Nick, with the backing ofsome of the world`s leading medical experts,had tried to make sense of Anna`s death.
The mystery surrounding this led the family tojoin forces with CRY. At Anna`s inquest Philcalled a Press Conference with CRY, whenGranville Staff, Caroline Gard and Gloria Mosswere invited to give their account of howSudden Death Syndrome had affected theirfamilies.
Since Anna’s death Phil has been committed to campaigning to change theway medical assistance is deployed in this country at road races. Anna col-lapsed within 80 yards of a defibrillator which could have restarted her heart.If Anna had collapsed at her next race in France instead of in England shewould have had support at the finish line of a mobile hospital with a resus-citation unit identical to those that exist in hospitals and an emergency anaes-thetist. Treatment in the case of cardiac arrest problems must be given within3 minutes.
THE LOYLEY`S CAMPAIGN
IN MEMORY OF ANNA
We are immensely grateful to the Loyley family and their friends who havebeen supporting CRY’s raising awareness campaign and donated £11,217.20in Anna`s memory and we look forward to hearing the final outcome of theirwork to change medical cover in road races which is now being considered forratification at the highest level in the UK.
RUNNERS IN THE 1999 NATIONWIDE CITY OF BATH HALF MARATHON RAISED £1672.44 FOR
THE ANNA LOYLEY MEMORIAL FUND
IN MEMORY OFMICHAEL JENNINGS
AND PAUL BENT
PAUL BENT MEMORIAL FUND
Paul was a sports fanatic. He played squash,
worked out at the gym, was a keen Leigh
Rugby League supporter and played for
Leigh Miners when he was younger. He died
after a training session in the gym, on the 3rd
of Feburary 1999, aged 31.
The coroner`s verdict was left ventricular
failure and hypertrophy.
Paul had everything going for him. He was
engaged to a wonderful girl called Sharon,
whom he loved dearly, they owned their own
home and he had just been promoted at
work.
Paul`s Mum and Dad, Carole and Albert,
brother Darren, and fiance Sharon have all
gone to great depths to find out exactly why
Paul died but to no avail until Albert`s broth-
er saw an article on SDS. This prompted
them to look on the Internet and that’s when
they found out about CRY.
They write “Thank you somuch for bringing this to lightfor us. It will not bring Paulback to us but it does help alittle to understand”
Paul’s workmates organised a
charity Rugby match and
have raised a brilliant £425 in
his honour.
Paul (on left) pictured here as Best Man to his dear
friend Steve who was with him when he died
IN MEMORY OF
MICHAEL JENNINGSMichael`s family have
made a wonderful donation
of £300.00
Michael`s Sister has written :-
WIMBLEDON FUNDAYAT THE ALL ENGLAND LAWN TENNIS &
CROQUET CLUB HAVE RAISED NEARLY £10,000
Wimbledon Fundays have been running for 6 years and in that time have raised nearly £10,000. Organised brilliantly by Frances Presley, here is a collection of Funday Photos taken over the years. Sadly we now have to say goodbye and thankyou to all our very special helpers.
How are we all going to fit on court? My turn!
X Chairman Ron Presley with his grandsonsSorry - no strawberries - but we`ve lots of cakes
Ron & Frances - time out for a hug The exhausted CRY team of volunteers
The Bond Bouncers - Our champion skippers
THE DURHAM MOBILE SCREENING WAS HELD ON THE
3rd & 4th JUNE
DURHAM MOBILE SCREENINGIN MEMORY OF DAVID CROSS, SARAH WOODHEAD AND STEPHEN LAMB
Our second mobile screening weekend took place on Saturday, 3 and Sunday 4 June, thistime in Durham, at the sports centre which the Newcastle United Football Club use for train-ing. It was a superb venue where we were offered all the facilities and equipment required.Forty sporty youngsters, the majority of which were competitive swimmers, came along tobe screened.
BBC television came along and filmed youngsters being screened and BBC RadioNewcastle did a live interview on the Saturday morning with Kevin Alder about the screen-ing weekend and CRY also received much press coverage throughout Durham.
Unfortunately we had no control over the weather. To say it rained all weekend is an under-statement, it came down in sheets, non-stop. Many of you may have seen in the nationalpress and television the floods, which happened in Durham that weekend as a result of therain. This was Dr Firoozi's first visit to the north-east and I think if he ever plans to comeback to visit this area he'll be contemplating hiring a boat! It really was that bad.
Once again, Harry Hindle's help in the lead up to the screening was invaluable and thetechnicians Richard Kumar and John Waudby again were terrific and worked so hard overthe weekend, Richard carrying out the Echo testing and John the ECG testing, both withsuch care and consideration to the youngsters involved. It was a delight to meet Dr SamFiroozi who spent time with every individual following their screening, which was muchappreciated by the parents who accompanied the youngsters.
Jen Kinghorn and Carrie Kumar were superb in assisting Richard and John all weekend,with some welcome help from Linda Lamb on the Saturday afternoon. Viv and JimmyNailis, Pauline Wilkinson and Ian Perrin (who hails from New Zealand and has now sent acopy of the CRY brochure to family and friends there) manned the reception area over theweekend, assisted with form filling etc. and made everyone feel so welcome and veryrelaxed, they were wonderful. Kevin Alder was a great help in arranging such a superbvenue at no cost to CRY, hotel accommodation at a very good rate and free lunch on theSaturday from the local Greggs bakery. Chris Kinghorn spent the day before and the dayafter the screening, collecting, delivering and driving essential items to and from the venueand during the actual screening weekend he and Kevin Alder together with AdrianWoodhead, helped everyone out whenever necessary, no matter what the task was.
We know the above named people were not spending their weekend to receive a huge voteof thanks, but that is exactly what we want to do, for without them we would not have hadsuch an enjoyable, worth-while weekend. We have received many messages of thanksfrom the individuals/families being screened and without exception they were full of praisefor the warm welcome they received on arrival at the venue and the care given to them bythe technicians, their assistants and the cardiologist.
Thank you so much to everyone involved for making this screening such a fitting tribute toour son, David. Although this screening weekend was funded by David's Memorial Fund itwas also dedicated to Stephen Lamb and Sarah Woodhead.
From Jo and Charlie Cross
IN MEMORY OF DAVID CROSSSARAH WOODHEAD AND
STEPHEN LAMB
Chris Kinghorn & Harry Hindle
(CRY`s Screening Manager) discussing
‘what`s to do’ on the night before
Jo Cross & Adrian Woodhead (on left) with
Pauline booking in Andrew & Laura Burgess
Richard Kumar carrying out
an Echo on Gavin Fell
John Waudby being filmed by the
TV crew reading an ECGDr Sam Firoozi in consultation
John Waudby
carrying out an ECG
on Andrew Burgess
A very happy Jo & Charlie Cross Jo & Charlie`s superb team of
helpers - Jim Nailis, Jen Kinghorn,
Ian Perrin & Viv Nailis
RAISING AWARENESS
With Permission Daily Record - Glasgow 17.05.00
RAISING AWARENESS
With Permission Daily Record - Glasgow 17.05.00
RAISING AWARENESS
With Permission South Wales Evening Post - Swansea 18.04.00
RAISING AWARENESS
With Permission South Wales Evening Post - Swansea 18.04.00
RAISING AWARENESS
With Permission Liverpool Echo 04.05.00
RAISING AWARENESS
With Permission Evening Gazette 22.05.00
RAISING AWARENESS
With Permission Thanet Times - Kent
RAISING AWARENESS
With Permission Evening Gazette - Colchester 10.12.99
RAISING AWARENESS
With Permission
RAISING AWARENESS
With Permission News Post Leader - South Shields 13.04.00
communication.If you would like to be put on ourCRY list, please
email us withyour details.
BULLETIN BOARD
We have received a few requestsfor a copy of the ‘That`s Ester’
programme which was broadcaston 30.04.99. If you would like to
borrow a copy then please send aself addressed padded Jiffy bagwith stamps to the value of 66p
to the Office.
Wonderful news from Keeley &Dave Ashley. Their beautiful babydaughter Jazmine Georgia MayAshley arrived at 10.40am on
Thursday 18th May 2000 weighing7lbs exactly. Keeley says “She isabsolutely gorgeous but makes
plenty of noise!!! - I just don`t seemto get anything done other than
feeding or nappy changing”.Congratulations to you from
everyone in the office.
Ken Jones
We would like to send Ken (from our
CRY Screening Team) our best wish-
es and a speedy recovery from his
recent surgery on his Big Toes. Up
until now he has been in pain waiting
for his operation and we look forward
to seeing him and wife Annette at a
CRY Mobile Screening again soon.
CRY CARPET APPEAL
We are desperately seeking carpeting
for the downstairs of the new CRY
office. The area needed to be covered
is 40 feet x 27 feet (approx). Please
contact the office if you can help
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 organisingfundraisings that it would be brilliant if youcan take photos of your great day. It wouldalso be extremely useful to Tony if, whenyou write in to the office, that you clearly
state how much was raised, and by whom.
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)
BULLETIN BOARD
RING FENCED
FUNDRAISING
Please remember thatunless you notify us andget the necessary docu-mentation and confirma-tion from the office for“ring fenced” fund raisingbefore you start a fundraising venture all fundsraised will be used forCRY Core Funding.Retrospective “ring fenc-ing” is unfortunately justnot possible. CRY cannot be responsible forany “ring fenced” fundraising unless it hasbeen 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
Are you up for
THE CRY COMMANDO CHALLENGE?
This year`s CRY Commando
Challenge will be on Saturday 7th October
at Woodbury Common in Devon
If you would like to register your
team please contact Mike Foster -
Co-ordinator of CRY Commando
Challenge on 01372 276187
Teams need to be a minimum of 3 and a maximum of 5 people
LLuuccii’’ss LLoocckkeett ffoorr CCRRYYLuci 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.
SECTION 64 GRANTS
CRY was again unsuccessfull in it`s application for a
Section 64 Grant for 1999. Ifanyone would like the list of
successfull applicants pleaseapply to the office
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 dis-
play information about CRY. Also fea-
tured 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
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
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
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
Would you like to run in
The London Marathon for CRY?
If so please contact Mike Foster onphone 01329 231734 fax 01329 280379
Liz Foy for Sarah Louise Williamson 1999
LATEST STATISTICS
NOW REVEAL THAT
NEARLY 1 IN 100
CHILDREN ARE
BORN WITH A
HEART DEFECT
SINEAD CHAPMANWe have heard that thesurgery Sinead had toinsert a defibrilator wentvery well, but she will beneeding to return to thehospital for further treatment. We are all thinking of you Sinead, especially yourfriends on the CRY Counselling Course.
NEW CRY GUIDELINES
BECAUSE OF THE GROWTHOF CRY, GUIDELINES FORREPRESENTATIVES ARE
BEING INTRODUCED WHICHWILL BE AVAILABLE ONREQUEST. CRY WILL BE
INTRODUCING 8 U.K DIVISIONAL REPRESENTA-
TIVES WHO WILL BE SUPPORTED BY COUNTYREPRESENTATIVES. OUR
CRY ADMINISTRATOR JAN SMITH IS ALSO
PRODUCING A MANUALON “GETTING INVOLVEDWITH CRY” WHICH WE
