CRY Update Magazine - Issue 39

Brochure UpdateIssue 39

CRY Unit 7 - Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey KT20 5LRTel: 01737 363 222 Fax: 01737 363 444

Web site: www.c-r-y.org.uk e-mail [email protected]

CRY Patrons: Rob Andrew MBE, Jeremy Bates,Ian Botham OBE,Mark Cox MBE,Nick Gillingham MBE, Rob Jones MBE, Professor WJ McKenna,Sir Steve Redgrave CBE,Professor Michael Vincent.

CARDIACRISK in theYOUNG

1995 - 2005 CRY’s 10th Anniversary Year

CRY

Contents

No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without prior permission of the Editor. The Editor and Committee welcome letters but reserve the right to edit when necessary and to withhold publication. Anyopinion or statement by the author of any article or letter published does not necessarily represent the opinion of the Editor, or its Officers. Articles pertaining to health relat-ed topics are FOR INFORMATION ONLY. Readers should obtain advice from their own practitioner before attempting to diagnose or administer any medication. Mention ofany products or procedure should not be considered as an endorsement for said product or procedure.

CRY Representatives1 Meet Dr Clare Hinkley our Volunteer Co-ordinator for Primary Care Trusts

Newsletters and Reports2-4 Newsletter - Alison Cox the Chief Executive5 Steve`s Report6 Mat’s Report

My London Marathon7 My London Marathon by Rosemary Castle In memory of Alessandro Testardi

Kids for CRY by Julie Tanner8 Julie’s Interview with Dr Jonathan Holliday Medical officer of Eton School 9 Wordsearch / Jokes10-13 Kids for CRY Fundraising

London Marathon 200514-17 Picture Gallery

CRY Fundraising21-26 Our Fundraisers28,29 Our Fundraisers30 Skydiving for CRY34-39 Our Fundraisers

In memory of 11 Red Devil Tandem Skydive in memory of Anthony Lancaster 20 The SRC Ben Thorn Cycleothon 6 In memory of Ben Thorn27 The ‘H’ Howard Jennings CRY Memorial Trophy in memory of Howard Jennings31 The Million Metre Row In memory of Damien Kosten32 The 3 Peaks Challenge in memory of Andy Gard33 In memory of Julian Wort40 In memory of Sebastian English

Raising Awareness 41 Grief like this can drive you insane - In memory of Sebastian English - The Daily Telegraph 02.05.0542 A deadly gene killed my wife - In memory of Chantel Robson - Best Magazine 09.11.0443 Tears and tributes for a special young man - In memory of Khalid Sibley - The News, Portsmouth 17.09.0444 Vow to raise awareness of rare heart condition - In memory of Mary Mooney - The Democrat, Newry 26.10.0445 Grandmother’s grief as rare disease kills teenager - In memory of Ryan Hulme - North Staffordshire Evening Sentinel 31.08.04 46 I wouldn’t want anyone else to go through the pain we have - In memory of Emma Carter - The News, Portsmouth 17.11.0447 Heartache of a child’s death - Cry’s Private Members Bill - The South Wales Evening Post 12.03.0448 Never too young for an attack - In memory of Andrew Parr - The Gazette, Blackpool 27.11.0449 Tragic Gran’s bid to help save lives - In memory of Pauline, Rosaleen, and Matthew - The Express & Echo 27.08.0450 Postcards highlight the tragedy of those who die young - In memory of Julian Wort - The Frome Times 16.09.0451 Tackling Sudden Killer - Cry’s Postcard Campaign - The Thanet Extra 06.08.0452 Screening could have saved promising young footballer’s life - In memory of Mark Pover - The Tameside Reporter 09.12.0453 It’s just another day in the life of your Member of Parliament - The Tameside Peporter 23.12.0454 Town couple’s lifesaving mission - In memory of Andy Tait - The Glenrothes Gazette 03.11.0455 Hidden heart defect checks on offer - In memory of Ian Bowen - The Evening Gazette, Middlesbrough 08.09.0456 Couple warns: Watch out for heart problem - In memory of Madeleine Mulcahey - The Oxford Mail 02.11.0457 Heart check saved my Matthew’s life - The Evening Chronicle, Teeside 24.05.0458 If we can stop just one SADS death, it’s worth it - In memory of Lisa Jane Brown - The North Staffs Evening Sentinel 02.09.0459 Wing wonders score for Dom - The Birmingham Evening Mail 10.08.04 60 Club’s special James tribute - In memory of James Wood - The Hertfordshire Mercury 03.09.04 61 Making great strides raising awareness of illness - In memory of Jimmy Wilson - The Sunderland Echo, City 24.08.0462 Sir Elton signs up to help duo - The Western Gazette 26.02.0463 Hundreds benefit from Dominic’s festival legacy - In memory of Doninic O’Loughlin - The Brighouse Echo 03.09.0464 Centre staff raise memorial cash - In memory of Julian Wort - The Warminster Journal 14.01.0565 Dad loads up for trek in memory of Max, 2 - In memory of Max Smith - The Oxford Mail 20.12.0466 Footballers strike for charity - In memory of Steve Tanner - The Kentish Express 02.12.0467 Family raises cash for CRY - In memory of Jimmy Wilson - The Evening Chronicle68 Honoured by Queen - The Deeside Chronicle 31.12.0469 Bulletin Board70 Back Cover ‘God’s Lent Child’

Many thanks to Tim Woolley at Press Craft, Lithographic Printers, for all all his advice andsupport in subsidising the printing of this update. With his help we have been able to reduceour printing costs while significantly improving the quality of the finished product.

CRY

My name is Clare and I am the middle of five siblings. At least, that's what Ialways used to say until the sudden and unexpected death of my sister Jane inNovember 2003. Since then I have often hesitated before saying this. Faced withthe prospect of having to explain to sympathetic strangers about Jane's death, Ioften feel it might be easier just to mention my living siblings. But in reality I amproud to be the middle of a large family and Jane is still part of that and alwayswill be.

Jane was the oldest of us and we all thought, probably the fittest. She lovedcycling and skiing, and often went running and to fitness classes. She was 35,married and had two children; Emma, aged 8 and Luka, aged 7 months. As faras we were aware there was nothing wrong with her. That was until the morningof the 8th November 2003 when she just didn't wake up.

My husband and I were temporarily living back with my parents, in Guildford, whilst waiting for our flat purchase to go through, so Iwas there when my Mum received a phone call from Jane's husband, Edwin, at just after 7am on that Saturday morning, saying thatJane was unconscious and there were paramedics working on her. My parents were frantic with worry, but I couldn't believe it wasthat serious. Jane often fainted, something that we now know was probably an indication of a heart condition, but she also had lowblood pressure, so everyone just put it down to that. I thought this was just another (if slightly more serious) one of those faints. Lessthan an hour later, we got another phone call from Edwin saying that Jane had died. It was an utter, sickening and devastating shock.How could a perfectly fit and healthy young woman just die in her sleep?

We all rushed to the Lister hospital in Stevenage to be with Edwin and the children, I didn't know what to expect on a day like that, butI certainly didn't expect to see policemen outside Jane's house and questioning the neighbours. I also didn't expect to go and seeJane's body at the hospital. I wouldn't have done so except for the thought that it was my one and only chance to say goodbye.Although I knew that that image of her would stay in my mind forever, I'm glad I saw her. After such a sudden death I think I wouldhave found it even harder to believe if I hadn't seen for myself that this was no longer Jane and that she really had gone forever.

The autopsy took place 4 days later and I was sure that they would find an obvious cause of death. Perhaps a massive brain haem-orrhage, after all, for a fit, young person to die so unexpectedly there must have been something terribly wrong. However, the onlything the pathologist could find that was slightly abnormal was a shortened mitral valve anterior cusp, so the cause of death was putas 'Mitral valve malfunction. Aetiology uncertain'. We have subsequently learnt that the post-mortem was very unsatisfactory and thattissue samples that could have helped diagnose a heart condition that could cause sudden death were not taken. We had previous-ly heard news reports about something termed 'Sudden Adult Death Syndrome', so, soon after her funeral we started to search theinternet for information about this condition, and that is when we came across CRY.

Suddenly we were not alone. There was a whole charity supporting families like ours and, even better, there was perhaps somethingwe could do to try and find out why Jane died. I spoke to Alison Cox who was extremely helpful, not only because she understoodwhat we were going through, but also because she confirmed what I had already discovered, that Jane might have died of a heredi-tary heart condition and that our family should be screened to see if we had also inherited the same condition. More importantly shealso stressed that we should go for screening at a specialist centre. It took some persuasion but eventually I got referred to Prof.McKenna, as did Lizzie and my Mum, but other members of my family had more trouble getting referred outside their PCT, which hasall added to the time it has taken to piece together enough information from everyone's test results to come close to a diagnosis.

A year and a half after Jane's death there was finally enough information from our test results to indicate that Jane probably died ofArrhythmogenic Right Ventricular Cardiomyopathy (ARVC) and that another sister, my Mum and I have the condition that killed her.We are still waiting for genetic tests to confirm this diagnosis, but at least this finally answers our questions as to why Jane died. Italso helps to reduce the fear that it might happen again to another member of the family, as we will be continually monitored and weknow that treatment is available if required.

Throughout this process of trying to find a cause for Jane's death and to get appropriate screening for the rest of the family we havehad to be very pro-active. Neither the coroner nor any of our GPs recommended that we sought testing for a hereditary heart condi-tion. In fact we had to fight to be referred to the correct specialist. We were also extremely let down by the post-mortem as if the cor-rect tissue samples had been taken it may well have been possible to diagnose ARVC at that stage. This all adds to the stresses afamily has to go through following a sudden death, making it even harder to have time to grieve. So I was very pleased to hear aboutthe publication of a new chapter in the Coronary Heart Disease National Service Framework, specifically for Arrhythmias and SuddenCardiac Death. The implementation of this framework should ensure that there is far more support available for families following sud-den cardiac death and hopefully prevent such deaths occurring in the first place. The challenge now is to ensure that this frameworkis implemented throughout the NHS as soon as possible. I was therefore very excited when I was asked if I would like to be the CRYPCT Representative, the aim of which is to try and ensure that the PCTs are both aware of and active in trying to implement the rec-ommendations of the new NSF chapter.

I am a research scientist, specialising in tropical parasitic diseases, but I'm currently between contracts so I offered the spare time thatI have at the moment to help CRY in any way that I could. It was felt that PCT's would be more likely to listen to an affected familymember. It was a massive achievement to get an NSF chapter devoted to sudden cardiac death and gives us the tools to ensure thatthere is a support system for families who have gone through the trauma of loosing a relative so suddenly. The challenge now is tomake sure that the recommendations of the framework are put in place as soon as possible. Clare Hinkley

If you would like Clare to approach your Primary Care Trust (PCT) please call her on 07961 004 509or write to Clare at the CRY office. For Clare’s full write up please visit the CRY Website

Cardiac Risk in the Young | 1

Katie, Lizzie, Jane, Philip and Clare.

Meet our Representatives:Our Volunteer Co-ordinator for

Primary Care Trusts is Dr Clare Hinkley

Issue 39

CRY CRY

2 | Cardiac Risk in the Young

Issue 39 Newsletterby the Chief Executive

Issue 39

CRY CRY

January; Our 10th Anniversary year began on January 7 withour Wales Postcard launch organised by Paulette Smith ournew Divisional Representative in South Wales. Thanks toPaulette's endeavours this event effectively became the launchof CRY in Wales with requests for 15,000 postcards made anda considerable amount of press coverage achieved.

Paulette chose Morriston Hospital Post-Grad Centre for theWales launch, arranged for Novartis tosponsor the lunch and INCO to spon-sor the Postcard. The event was sup-ported by families from Vale ofGlamorgan, Cardiff, Flintshire,Pembrokeshire, Swansea and Conwy.

Attending was a galaxy of VIP's includ-ing Welsh Assembly MP Edwina Hart;the Deputy Lord Mayor of SwanseaMair Gibbs; and geneticist ProfessorMark Rees based at the new Instituteof Life Science in Swansea. Mark con-tacted me after returning to the UKhaving spent 5 years in New Zealandresearching inherited cardiac defects infamilies who had suffered the loss ofyoung relatives from undiagnosedheart conditions. Speakers included our Patron Rob Jones

who told of his feelings when a fewmonths after he had joined CRY tohelp fundraise in memory of ChristiaanSmith he suddenly heard that his 32year old cousin had dropped deadfrom SADS; Gower MP Martin Catonwho spoke about the importance of ourPostcard Campaign in raising aware-ness and Consultant Cardiologist DrMark Anderson, who has been repre-senting Wales on our NSF sub-groupon sudden cardiac death and screen-ing, concluded the talks by making animpassioned speech that changes thatwould hopefully be implemented inEngland through the work of our sub-

group would only happen in Wales if pressure was brought tobear through the Welsh Assembly. Marks appeal was for sup-port to ensure that all the work being done would not be in vainfor Wales.

Paulette did a superb job hand-deliver-ing invitations to every department inthe hospital, resulting in a packedreception with 93 people attending -including most of the cardiology depart-ment! Those that came were able totalk to our families and learn of theunbelievable circumstances of thedeaths of their children and young part-ners. Doreen Harley who had beenunable to attend the Wales Postcardlaunch subsequently assembled herlocal MP's in North Wales to promotethe campaign with great success and further publicity.

On January 12 CRY Representatives were invited to attend theDepartment of Health Research Forum on Genetics at whichselected stakeholders participated in identifying the issues theyfelt would most help progress the genetics programme. Thetaking of family history, long advocated by Professor McKennaas the simplest and most cost effective tool in identifying thoseat risk, featured strongly in recommendations by delegates as

a crucial and attainable first step to reduce deaths from theseconditions.

For the best possible reasons the first appointment of our CRYfunded Research Fellow, Dr Jayesh Makan, had to terminate 6months early as Jayesh managed to obtained his national train-ing number in cardiology in the highly sought after NorthwestThames London Deanery (the most competitive rotation) inJanuary rather than June! We are very proud that, as he hasfully acknowledged, his work with CRY undoubtedly assistedhis early selection. Our new Research Fellow, who will beagain assisting Dr Sanjay Sharma with our screening pro-gramme, started in July.

This month also witnessed the 2 final meetings of our SuddenCardiac Death and Screening sub-group when expert submis-sions were collated, formulated and presented to Dr RogerBoyle by Chair Professor Bill McKenna. The final documentwas forwarded to various committees, policy branches, financialdepartments, Ministers and Cabinet Ministers before beingsigned off in preparation for its introduction.

The Cardiovascular Research Funders Forum (CVRFF) held ameeting with international speakers on Premature Death andthe Heart on January 31/February 1 atthe Institute of Physics with 5 Sessionsover 2 days. Session 4 on theExperience of Sudden Death featured 2speakers from CRY. Supporter JulieJohn gave a deeply moving talk (thatreduced many of the delegates to tears)about "The Family Experience" and howthe loss of her 32 year old husband andthe diagnosis of Long QT in their 2 chil-dren Laura and Danni had changed theirlives, and I was invited to speak on "TheCounsellors View" in dealing with affectedfamilies. Propitiously, at the end of the meeting it wasannounced that the European Cardiac Society had just recom-mended that all athletes should be screened. This led to a bar-rage of calls and publicity for us, and the issue was givenextended coverage on BBC's on-line website highlightingCRY's advocacy of screening.

February; Our South East Postcard was launched on February18 in Smallfield Surrey and was sup-ported by families from Kent, Surreyand Sussex. Special thanks to RobThorne for organising this event andwhose company HCW Print were notonly the specificsponsor for thispostcard buthave also spon-sored the entirepostcard cam-paign by print-ing everything

required at cost, in memory of the lossof his son Nicholas age 13; also to theCentenary Hall Smallfield for providingthe venue and to the Thorne family andfriends who provided us all with a won-derful hot lunch on a cold winters day.Tim Loughton MP Shadow Children's Minister and ShadowHealth Minister spoke with feeling of the impact of sudden car-diac death on families and the event was covered by BBC TVSouthEast.

On February 5 the CRY Surgery Supporters (SS) Club met at

Martin Caton MP

Julie John

CRY Patron

DivisionalRepresentative in

South Wales

Paulette Smith

Rob Jones MBE

Tim Loughton MP

Rob Thorne

Issue 39

the Haywain in Epsom.Special thanks to JulieMills for organising thesemeetings and to DrSanjay Sharma for againgiving us some of hisvery precious off dutytime to come and seeour members. It was aparticularly memorableoccasion as we wereintroduced to DanniJohn's baby Dylan who was unquestionably the star of theweekend.

March; Dari Taylor's Cardiac Risk in the Young (Screening)Private Member's Bill that was debated inthe House of Commons on March 12 2004resulted in the new Chapter 8 in theNational Service Framework onArrhythmias and Sudden Death which wasannounced by the Secretary of State forHealth John Reid on March 4 2005 at theCoronary HeartDiseaseCollaborativeConference in

Birmingham. The Department ofHealth's Press Release featured CRYusing the story of Laura John with hersuperb picture tossing the coin atWimbledon for Roger Federer andAndy Roddick, and concluded with ourquote highlighting the issue of youngsudden cardiac death.

CRY had 4 representatives on the sub-groups during the con-sultation period for the new chapter and also, most crucially,has been invited onto the New Implementation Board. Thisensures that in the vital discussion period when funds are allo-cated and targets set - young sudden cardiac death will have a

significant profile.

Professor McKenna said "the consultationprocess brought together all the elementsinvolved including coroners, geneticists,expert clinics and support groups. It hasbeen very valuable and should result in adramatic improvement in the prevention oftragedies, and the care and managementof those affected. All involved learned.Preconceptions were broken down.Important contributions made. It has real-istic and positive potential and, if recom-mendations are implemented, within 3 to 5years we will see significant results."

On March 17 we launched the NorthPostcard at Hull. Special thanks fororganising the day to CountyRepresentative for Humberside PaulineJolly; Hull Collegiate School for sponsor-ing the postcard and Hull High School forproviding the venue and the catering.Yorkshire TV's Calendar programme cov-ered the event.

On March 22 I wasinvited to speak at atraining day for civilservants on PrivateMembers' Bills andSecondary Legislation,on how a small charitycan successfully lobbyfor a Private MembersBill. I felt particularly

proud to be able to tell disbelieving delegates that we hadachieved this without the backing of any union or sponsorshipand guidance from any commercial group - an apparentlyunheard of achievement!

On March 29 I was invited to the home of our CountyRepresentative in Sussex Jenny Cole who organised the press

to attend a meeting with 3 MP's: Nigel Waterson, CharlesHendry and Greg Barker, who had all declared support for ourcampaign.

Dr. Makan's paper in the March 2005 Issue of Heart"Identifying the Physiological Upper Limits of Left VentricularCavity Size in Highly Trained Adolescent Athletes" was carriedby Reuters and received much attention in the national press.

On March 31st The Rugby Football Union circulated a PressRelease supporting the development of our screening pro-gramme in Rugby with the ultimate goal of extending screeninginto schools and clubs.

April; CRY had good representation in the London Marathonwith 65 Golden Bond and 23 ownplace runners raising over £110,000gross. Our London MarathonReception was again held at theBrittannia Hotel. This Receptioninterfaces with CRY ChairmanProfessor Greg Whyte’s ongoingresearch into the assessment of car-diac fatigue after prolonged inten-sive aerobic exercise i.e. whetherintensive exercise damages yourheart. Special thanks to all thosebrave runners who gave bloodbefore, immediately after (that reallyis tough!) and 24 hours later.

Greg was again the first full cos-tume runner (in his giant Heart)across the line, followed by 3 othermembers of his Heart Team whoheard the commentator announce on TV that CRY had got itsrunners well organised this year as he individually announcedeach one as they crossed the finishing line in quick succes-sion! Greg's picture has reached iconic status being used onthe London Marathon website, running on giant screens as theLondon Marathon News feature at various airports, and also todecorate a number of magazine features including a ThirdSector article about VAT and fundraising events, and EasyJet's

inflight magazine.During the event therewas excellent TV cov-erage for our 10 CRYheart runners whichincluded a sensitivelyportrayed 5 minuteinterview by ColinJackson featuringPhilip Allen whoexplained why theloss of his sister Janeinspired him to run forCRY. Philip and his


Dr Sanjay Sharma with the Surgery Supporters Club

Professor BillMcKenna

Jenny Cole, Nigel Waterson MP, Charles Hendry MP, GregBarker MP, NIgel Cole and Alison Cox, chief executive of CRY.

Professor Greg Whyte

being interviewed by Colin Jackson

John Reid MP

Dari Taylor MP

CRY Chairman

CRY Family’s seen here at the NorthPostcard Campaign Launch

Philip Allen

Pauline Jolly

this raising awareness initiative is vital to its success. As theelection caused our APPG to loose 20% of its members drop-ping from 83 to 60 people your MP might have lost his/herseat. If you would like more postcards to campaign with thenewly elected member please let us know.

Immediately fol-lowing the launchof the Postcardwe drove toCavan to attendthe All IrelandLine DancingChampionshipswho had chosenus as their charityof the year andraised the incredi-ble total of £3,700in memory of AineMcCann who diedsuddenly age 8from Myocarditis. Aine's Mum Aravon was the Novice CrystalWorld Champion in 2001 and her daughter Aisling won theNewcomer Primary World Championships in 2003. Althoughwe were unable to get there in time to see the finals wereceived a wonderful welcome and enjoyed a spectacularevening of celebration witnessing the champions superb danc-ing skills in "relaxed mode."

I was driven to Dublin the next morning by Michael and MarieGreen and was delighted to attend a special luncheon meetingof their Trustee Board of CRY in Southern Ireland and learn ofthe progress being made with their goal of funding a screeningprogramme at the Mater Hospital in Dublin.

After travelling into our office from all over the UK for 12 meet-ings in 2 years our second Group of 9Bereavement Supporters receivedtheir much valued accreditation forCounselling Theory. Special thanks toJulia Cayne for the training of our CRYBereavement Support Team of 20 indi-viduals over the last 4 years and to theDepartment of Health for funding thedevelopment of our BereavementSupport programme. As far as we areaware we are the only organisationthat funds the training of bereavedsupporters with conventional coun-selling skills which includes the option of further Diploma train-ing if they elect to have it. This gives our BereavementSupporters the confidence that they have acquired recognisedcertification to help others, to the considerable benefit of ourbereaved families.

We have appointed Dr Clare Hinkley (sister of Philip Allen) asour CRY Volunteer Co-Ordinator for Primary Care Trusts.Clare's sister Jane died suddenly age 35. She had been suf-fering from symptoms that had not been diagnosed. It was notidentified at Post Mortem. Her family had to fight for furtherinformation, and after being tested 3 members found they alsohave the condition. Jane left a devastated husband, 2 bewil-dered children, grieving parents and 4 distraught siblings.

Clare will be meeting with Chief Executives of Primary CareTrusts to report back to our MP's on how the new chapter willbe implemented in their hospital. She will be a powerful advo-cate for the suffering experienced after a lossand we are lucky indeed to have such anarticulate apostle dedicating her free timeto address what could, and we believeshould, be done through the PrimaryCare Trusts and Chapter 8 onArrhythmias and Sudden Death toreduce the death toll of young suddencardiac death.

sister Katie, who alsoran for CRY, had earlierrecorded a TV newsfeature on Anglia TVwith Jane’s husbandEdwin ten Dam and 2year old Luka to raiseawareness.

Many thanks to ourintrepid massage teamof Stephanie Bray andDonna Willsmore whosoothed the achingmuscles of so manyexhausted runners at our reception at the Hilton Hotel after therace. Their excellent skills saved many from the alternativeprospect of excruciating post-race muscle soreness and theircheerful dispositions convinced the pessimists that the pain

really was worth the gain!

Congratulations to ourChairman Greg Whyte onbeing awarded aProfessorship - possiblythe youngest Professor inthe country? And CRY'sconsultant cardiologist DrSanjay Sharma who isnow the Medical Directorof the London Marathonand has also been elect-ed to supervise and man-age the selection of CRYas the UK referral point

for rare cardiac conditions by The National Electronic Library forHealth (NELH).

May; The May Bank Holiday found Tony driving the CRY Van toBelfast for the launch of our Northern Ireland Postcard. Thiswas our first visit to Northern Ireland and the launch was sup-ported by in excess of 60 members of families from CountyDown, Lisburn, Antrim, Derry, Fermanagh and Tyrone. DrPascal McKeownConsultant/SeniorLecturer in Cardiology atThe Queen's Universityof Belfast Institute ofClinical Science was therepresentative forNorthern Ireland on oursub-group for the newNSF Chapter. Specialthanks to Pascal forspending so much of hisSunday morning helping our families have a better understand-ing of the medical conditions that can lead to sudden death inthe young and answer their questions; the Stormont Hotel forproviding the venue and to John Lundy our DivisionalRepresentative in Northern Ireland for all his work in setting upthe launch. Shortly after the launch The Reverend Ian PaisleyDemocratic Unionist MP for North Antrim; Gerry Adams SinnFein MP for Belfact West and Martin McGuiness Sinn Fein MP

for Mid Ulster all declared support forCRY's endeavours in response toreceiving some of the 29,000 postcardsrequested by our families in NorthernIreland.

The Postcard Campaign is undoubtedlygathering considerable momentum. Wehave printed over 90,000 for the 9launches to date and hugely increasedour profile with the public, MP's and thepress. If you would like some postcardsto send MP's from any of the launches,please contact the office. Your help in

Issue 39 4 | Cardiac Risk in the Young

Professor Greg Whyteand Dr Sanjay Sharma

Stephanie Bray and Donna Willsmore

Dr Pascal McKeown

Aravon seen here in relaxed mode aftercompeting in the All Ireland

Line Dancing Championships

CRY’s Marathon Massage Team

Julia Cayne

DivisionalRepresentative inNorthern Ireland

John Lundy

Report from Steve CoxCRY CRY

Issue 39 Cardiac Risk in the Young | 5

A big thank you to everyone who sent in photos of our 2005 London Marathon team and a specialthank you to ‘Vixta’ for spending the day on top of a bus stop (with a policeman’s permission ofcourse!) snapping away as all our runners passed her by at the 9 mile mark. For those of you whothought you were hearing voices it was probably Vicky cheering you on. Recruiting for the 2006London Marathon is already well underway. If you or a friend would like to run for CRY please contactme as soon as possible or go to www.crunch.org.uk/cry. If you do register directly via the websiteplease be sure to email me [email protected] to keep us informed as we need to know which runnershave been recruited by CRUNCH and which have been recruited by CRY.

If you would like an A4 or A3 copy of any of the pages in this update (printed in colour & laminated) please contact the office

My stories

The CRY website continues to be central to CRY's activities, andis now getting an average of 1200 hits a day.

Kerry Gray

As you can see this is our biggest update ever thanks to your incredible support. Tony has worked closely withMaria to follow up everything that has been happening since issue 38 and I hope you agree they have done a fan-tastic job.

New CRY Christmas CardsAfter the success of last year’s cards we are offering the same cards again with two newadditions. John Bennett has painted Lichfield Cathedral in memory of his daughter Laura.

Sue McBirney, an artist and friend of Sarah Lewis kindly offered her support toCRY by painting a local scene of Tenby harbour. Sarah is the sister of Huw Lewiswho died in 2002.

To view our cards please go to www.c-r-y.org.uk/christmas_cards_charity.htm to see a full colourcopy of all the cards. You will also see the full details, costs and sizes of the cards. Order forms can alsobe downloaded and/or printed out from here.

Media SectionThe media section keeps on expanding, as CRY is increasinglyfeatured in regional and national publications - including recentarticles in The Guardian, The Daily Telegraph, the News of theWorld and The Daily Express. All the articles can be seen at

http://www.c-r-y.org.uk/what_is_the_media_ saying.htm

New additions to the Parliament section include a write-up ofCRY's 2005 Parliamentary Reception*. Coverage of a recentdebate on the new NSF chapter; and more praise for CRY fromDari Taylor MP in her Spring Parliamentary Report to her con-stituents. *(This includes both a transcirpt and downloadableaudio files of each of the speeches).

http://www.c-r-y.org.uk/parliament.htm

A new 10th Anniversary page has been created which looksback over CRY's development from its origins to the present day.

http://www.c-r-y.org.uk/10th_anniversary_page.htm

10th Anniversary

CRY in Parliament

2005 London MarathonCRY's London Marathon page has also been developed.

http://www.c-r-y.org.uk/London_Marathon.htm

You can now find over 100 photos of CRY runners in the 2005London Marathon, plus a new section devoted to personalaccounts from CRY marathon runners and newspaper coverageof CRY marathon runners. This includes our first video (down-load) of Phil Allen’s interview with Colin Jackson, beware if youdo not have broadband!

http://www.c-r-y.org.uk/London_Marathon_accounts.htm

A number of familes have sent in their personal accounts of theirtragic losses which have been published in the the 'My Story'section of the website

http://www.c-r-y.org.uk/my_story.htm

The Surgery Support Group page has been updated with photosfrom some of the latest events, as well as contributions of per-sonal experiences of club members.

http://www.c-r-y.org.uk/ssgroup.htm

Surgery Supporters Club

Lots of new event write-ups have been published on the siteincluding parachute jumps, charity performances, and runningfor CRY. If you would like to send in a write up of your eventplease forward it me at [email protected] They can be read at

http://www.c-r-y.org.uk/past_events.htm

Event write-ups

Elaine has now started as CRY’s Volunteer Co-ordinator. She willbe helping to put together teams of people who live locally to theCRY office to help out as projects arise. Jobs will vary inurgency, from helping with mailshots to washing the screeningvan on nice summer days! If you live locally to the CRY officeand are able to help out, and are happy to go on Elaine’s list ofvolunteers please contact me.

2005 London Marathon

CRY Website

Goodbye for a happy retirement and a new staff in the CRY officeBy the time you receive this, Jenny will have leftCRY to enjoy the peace of retirement.

We will be sad to see her go as she has donesuch an incredible job for us over the past 3years. We are quietly hoping she may get boredof retirement and join our ‘in office’ volunteer list!

Report from Mat WilsonCRY Screening Manager

The CRY Centre for Sports CardiologyCRY


From the 24th-27th May, Anthony and I attended the BritishCardiac Society Conference. Unlike last year where we had aspot on the Delmar Reynolds stand, this year we had our own

stand right next to the foyer. The event was highly beneficial for CRY because itis a conference that allows the whole medical community to come together in onevenue (i.e. Doctors, nurses, technicians, etc). This allows CRY to disseminate allof our material in a structured format to specific medical parties. Most of the doc-tors were more interested in the statistical data and research that has been docu-mented by or within CRY's programme, whereas, nurses and technicians weremore interested in the bereavement, counselling and social support that CRYoffers. In summary, this was an excellent conference that has established newlinks and networks between other national medical staff and ourselves.

Immediately after the BCS conference, I attended the American College of SportsMedicine Conference (ACSM). This was a fantastic conference, in which therewas overwhelming support for CRY's screening programme. This will clearly be an excellent forum for CRY to present findings fromour screening programme in the future.

CRY’s New Research Fellow

Ethical Approvals for ECG testing in Schools

We have a new research fellow in Dr Sandeep Basavarajaiah from Kings College London. It is with pleasure to have DrBasavarajaiah working for CRY, and I look forward to working closely with him over the next 2 years. Dr Basavarajaiah's first screen-ing will be the England Rugby Junior National Academy in Bath.

The ethical approval has been taken forward within Lewisham and so far, two schools have allowed the CRY screening programmewithin their respective schools. We would like to thank Bonus Pastor School and Sydenham School who have agreed to allow CRYto approach the children from ethnically diverse backgrounds for their participation in a mass screening programme. We were hopingto start last month, but with GCSE exams, that was unrealistic. However, we are now looking to get started in the Autumn.University Hospital Lewisham technicians have already started screening controls for the statistical analysis.

I am also about to meet up with Caroline Gard, to get the Essex schools ECG screening project off the ground in the near future.

Once these two projects are underway we will be in an excellent position to expand these community screening projects to otherstate schools throughout the country.

Screening in SportCRY presented at the National Academy Managers meeting for the Rugby Football Union (RFU) at the end of May. England Rugbyand Premiership Rugby are two separate entities. England Rugby (who we are currently screening) are encouraging the Premiershipto screen their players. So far Leeds Tykes, Gloucester RFU and Bath RFU have agreed to have their academies screened. Datesfor Gloucester RFU and Bath RFU are yet to be decided, but Leeds Tykes are due to have screening on the 18th August.

ECG Screening in SchoolsCRY presented to the trustees of the Medical Officers of Schools Association (MOSA) in the early part of June. This organisation hasbeen in existence since 1884 and represents all the doctors for private schools within in the UK. They have decided to provisionallyback the screening programme within schools, thanks to the endeavours of Dr Jonathon Holliday (Eton School) and CRY is to pres-ent at the annual MOSA meeting (423 doctors) in Durham in the early part of next year.

The CRY Centre for Sports Cardiology in the MediaThe CRY Centre of Sports Cardiology has undertaken some filming for SKY television. In association with Dr Adam Carey (EnglandRugby / Celebrity Fit Club fame) the programme examined the cardiovascular health of the average "Joe Bloggs" off the street todemonstrate the state of the Nations health. Three programmes have been filmed, which should be going out on SKY later this year.

Community Screening ClinicsBoth the Colchester ECG clinic and CRY Centre for Sports Cardiology Clinic, running on alternative months, are providing excellentscreening services in the Community. Many thanks to the superb initiative of Caroline Gard in the running of the Colchester Clinic,showing just what can be done and how lives can be saved through providing these unique subsidised services. The ColchesterClinic is now becoming so well established that GP’s are recommending it to asymptomatic patients.

With kindest regards, Mat

British Cardiac Society Conference

Since my last report, it has been a rather exciting time in my life having just got married. On a professional basis,the CRY Centre of Sports Cardiology and the CRY screening programme have really taken off.

My London Marathon In memory of Alessandro Testardi

by Rosemary CastleCRY CRY

I decided to run for CRY in the 2004 London Marathon (and again in 2005), havingexperienced the sadness and loss of our dear friends' son, Alessandro. The training

was hard at times however the thought that I could help to raise money forresearch into Sudden Cardiac Death Syndrome made it really worth while. Theactual race was a very emotional experience and I enjoyed every mile of it!With the generous help of Alessandro's family and friends from Italy and thefundraising here in England I was able to raise over £3000 in total.

There follows a letter from the parents of Alessandro Testardi, who died in2003, which encouraged me to run for CRY in the 2004 London Marathon.

Alessandro Testardi was born in Rome on 4th February 1987. Throughout hisearly childhood he enjoyed swimming, and at the age of 6½ he joined the

“Monterotondo” football club near Rome. During this time he managed to com-bine successfully his studies and love for football, and apart from the usual growth

sicknesses typical of a boy of this age (e.g. chickenpox.) his health was good.

At the age of 14, during a routine health check he was diagnosed with a light cardiac arrhyth-mia. Since then his health was continuously monitored by a team of doctors at the “Paediatric Hospital, MedicinaSportiva Bambino Gesu" in Rome.

Following the ECG and various tests, Alessandro was diagnosed with an “aritmia ipercinetica” which would disappearunder stress when his heart beat reached 120. Alessandro’s heart, under physical stress, was performing in a perfectmanner, with maximum heart rate of 161, and 45 at rest. He was a true athlete, who played the right back position inhis football team and was also much admired for his ability to run.

His medical condition was not causing problems, and soon many Italian football clubs of the 1st and 2nd Division -including Sampdoria, Lazio, Livorno and Juventus - demonstrated an interest in his abilities.

After 6 tests with Juventus, he was finally signed, and in June 2003 he would have moved to Turin to start his footballcareer.

Sadly his dream was never to become true.

On the 19th of April 2003, Holy Saturday, while playing football in a federal tournament, he collapsed on the ground tothe despair of his father who was then watching the match.

A doctor who was also present tried desperately to resuscitate him.

Alessandro was a talented athlete, a well liked and much loved young boy,and his funeral was attended by hundreds of people. The event was alsoreported in local and national papers.

Alessandro’s heart was examined, after his death, by Prof. Gallo Anatomo-Patologo of the University of Rome and subsequently by a team ofresearchers of the University of Padova, who are studying the reasons forthe sudden death in young people.

It emerged, after a thorough investigation, that Alessandro had contracted avirus 2 weeks before he died and the final diagnosis was MiocarditeFulminate.

Con stima ed affetto Pasquale Maria Pia e Francesca Testardi

Alessandro’s parents wish to thank the support that CRY gives to familieswho like them have experienced a loss, and the effort that CRY is making inpromoting research to prevent similar deaths in young people.

Cardiac Risk in the Young | 7Issue 39

CRY CRY

Julie’s Interview

with

Dr Jonathan HollidayMedical Officer of Eton School

1. How did you find out about CRY?I belong to an association of school doctors called the Medical Officers of Schools Association (MOSA) that gathers together all sortsof doctors that look after young people in schools. It is true to say that these tend to be private schools but this is not entirely so, andthere are plenty of state boarding schools represented. It is a lively group that has clinical conferences at least twice a year and has abiennial prize for a paper presented on a medical subject related to school medicine. One year this presentation was about the expe-rience of a school doctor inviting CRY to come and screen the pupils of his school. I had already had the awful experience of havinga boy die of HCM while registered with me and I was really keen to avoid it happening again. His experience sounded great so I con-tacted CRY and they have been visiting our school each year ever since.

2. Please can you tell me about yourself and your work?I am a regular GP with an unusual practice! I live in Windsor and I work in Eton. We have 5700 patients registered with us of whom1300 are teenage boys aged between 13 and 18 (I won't tell you which school that is!). Another 500 or so are masters and their fami-lies and other people working for the school employed in other support roles. I am the doctor for the Royal Household in Windsor andwe have 300 residents registered with us who live in the Castle or in the park around it. These patients come from all walks of life!Then there are the patients of Eton and Eton Wick who fall in to the more regular run of things but who need just as much care andattention. I am married with two sons. One is already at Eton and the other will be starting there this September. Even though we liveso close, all pupils at Eton have to board.

3. What made you start the ECG testing programme at Eton School?The experience I had with a young man aged 14 dying on our playing fields made me determined to do what I could to reduce thechance of it happening to more youngsters. I spread the word of my experience but when I heard of what CRY were doing I knewthat this would be a great opportunity for more systematically reducing the risk. I have been proved right because already we havepicked up one WPW who has recently undergone successful ablative therapy.

4. How long has this programme been carried out?We have now completed 3 cycles and it has become a part of our annual calendar.

5. Can you explain about the opportunity you gave CRY's screening manager, Mat Wilson?I really want to spread the word and get more schools involved and I have been thinking how I might do this. CRY is always so help-ful and so supportive with any such initiative that I knew that I could count on them. I had talked with Mat about MOSA and he sug-gested coming along to do a presentation to the council of MOSA, of which I am a member. Council is made up of 13 or 14 active,enthusiastic school doctors so I knew that I could get exposure for CRY to at least that number. Whether that will turn into that manyscreening sessions we shall have to see but I certainly pushed them all hard! The meeting went well and I think that the other schooldoctors were impressed by what they saw.

6. Why are you a great supporter of CRY's screening programme?Simply because I think it really can make a difference and really can save lives. Ihave had another young man die this year. He had come over from Australia as agap student for a year. He registered with my practice and a few days later diedplaying rugby. I know that he would have been picked up using this test andwould still be alive today. The more people we can get screened the better! Myolder son has already been screened and soon my younger one will be as well.

7. Could you tell me please about the article you have recently written for GP magazine?This is another way I hoped to raise awareness of Sudden Death Syndrome and the existence of CRY. I wrote an article for them asa cold shot a couple of years ago but it was not taken up. More recently I have been reviewing the journals for them and writing areport every couple of months so the editors knew me and accepted a fresh article. It is planned as a follow up to Prof McKenna'sarticle in the same magazine that describes the conditions themselves. The magazine has a circulation of 30,000 GP's and is read bymany more (staff and family!). It is a good way of spreading the message further.

8. What would you like to see with our screening programme in the future?I would like to see it offered in every school in the country! Our experience is that only about a third of those offered it take it up, butthat could be a lot of cases found and a lot of lives saved. I would like it to be as ordinary as having your tetanus booster when youare aged 14.

When I heard of what CRY were doing I knewthat this would be a great opportunity for moresystematically reducing the risk... I think CRY’sScreening Programme really can make a difference and really can save lives... I would liketo see screening offered in every school in thecountry!... I would like it to be as ordinary as hav-ing your tetanus booster when you are aged 14.



Can you findthese words?

LEARNTEACHCLINICNURSEDOCTORHEALTHSCHOOLTUTOR

V E N R O T U T D F O C L I N I C S H O I F L O O H C S D K U S P T E I J K O N H W L H T N E O C T A E X E Q U S O T Y B S A T A F R L O D Z C R L U R U H R I H O J N T Z N U S T U R L T S H N E I M

CRY CRY

SCHOOLS AND HEALTH

This is for Chelsea. I hope you enjoy the wordsearch! It was lovely meeting you. Love Julie xxx(Chelsea is a little girl that I met in Colchester at the CRY Awareness Stall who had lost her brother to a cardiac condition last November)

Teacher - You should have been here at nine o'clock this morning!

What do you call a teacher with earplugs?

Doctor! Doctor! I feel like a cricket ball.

Doctor, doctor, I think I've caught a computer virus!

Here's your chemistry exam paper, Smith - totally unhurt!

What do vampire doctors say?

9:00 am

Pupil - Why, did something happen?

I've warned you before about eating chips!

How's that!

Anything, he can't hear you!

Necks please!

What do you mean totally unhurt!

I mean there's not a mark on it!!

O N L Y J O K I N G b y J u l i e

W O R D S E A R C H

10 | Cardiac Risk in the Young Issue 39

CRY CRY

Pupils from Joseph Rowntree School, York, took part in the YTC Charity Walk. With the help of Lobo the dog theyraised £145

"Please find encloseda cheque for £1083 forCRY. We raised themoney over two eventsin the same week. OnSunday 17th Octoberwe held a Martial ArtsSeminar with students

from Ju-jitsu, Judo, Karate and Kempo. Everyone had a great day. Thenon Friday 22nd we had an evening of entertainment with a young solosinger called Georgee and our children's Teachers Band providing themusic. Many people kindly donated raffle prices. The children are trying toorganise another fund raising event at Christmas, so hopefully we will beable to donate some more money then.Many people were deeply upset by the death of a young rugby player on a visit to our club.Only a few people had any idea that young children could die this way. We have supportedCRY for a number of years and have already had two of our four children checked. Our eldestdaughter is now under a cardiologist, even though her condition was not picked up by theE.C.G., the fact that we knew the risk because of CRY, we went to the doctors who picked up aheart murmur and have since found a problem with one of her valves.

Thanks for all the good work you do. We were very happy to do our little bit towards this wor-thy cause." From Kevin, Karen, Jodie, Steven, Adam and Kira McKane.

I am 11 years old and will be startingGrammar school in September. Mynew school has set me a number ofchallenges including raising moneyfor a charity of my choice in a man-ner of my choice.I have chosen CRY because I know

a number of people who have died due to undetected heart problems.

Just to say that we have given cheques for £300.85 to Roy Ball, who will put it in the name of JennyPearce, whom my Mother knew.

Just to tell you that my charity tea party raised£300.85! We baked thirteen different types of cake,served tea, coffee and soft drinks, organised two luckydips, had a 'guess the name of the celebrity' competi-tion and 'guess the weight of the fruit cake' competitionand sold some birthday cards. A close family friendmade 12 swiss rolls which we sold for £1 each - theysold out very quickly! We have taken lots of photo-graphs but are waiting to get them developed.Thank you for all your support with brochures, posters,balloons and the lovely sash which I wore! Many ofour guests were not aware of CRY before they attend-ed the party, so we hope we have raised more aware-ness and generated a few more supporters.With best wishes for CRY's future success,Helena.

In memory of Jenny Pearce

The McKane Family

The Martial Arts Students

The Teachers Band

Georgee the Singer

Joseph Rowntree School

WOW! Look at all the yummy cakes.

Roy Ball seen here giving a talk about CRY


CRY CRY

Pupils in Years 12 and 13 at Hull Grammar School have donated£533.67 to support CRY in memory of their friend Anthony Lancasterwho died on 13th July 2002, just a few days after his 17th Birthday.

Fundraising events included a Leg Wax by Nick Edwards, JamieKemp and StephenReynolds and a class-room slave auctionallowed younger members of the school to buy a classroom slave for theday.

Willing slaves included Chris Armstrong, Tom Baxter,Jonny Birch, James Burnham, Danny Levy, Tim Miller,Elspeth Nicholson and Helen Stillings. Our twoAustralian Gap Students, Kate Wicking and Leigh Joneswere also sold.

The Primary Department donatedmoney raised from their EasterConcert to swell the funds.

In addition two brave souls, DavidBratton and Elspeth Nicholson volunteered to tandem skydive withthe Red Devils.

Why would anybody want to jumpout of a perfectly good aircraft?Well because the door was open....!

In memory of Anthony Lancaster

‘Ground School’ Learning how to Fly

The exact moment of deployment

With the cameraman exiting a few seconds beforeflying on his back. We can see Elspeth waiting

in the door for the Jump

Anthony Lancaster

Elspeth seen here smiling her way to earth at 120mphWell done team! David and Elspeth seen here with their

Red Devil Tandem Jumpmasters

CRY CRY


The pupils in Form 82 at Ranelagh School, Bracknell, Berkshire have raised £62.52 for CRY.

The Stokes Church of England Primary School (Leicester) held a sale of their harvest produce following their annualHarvest Festival and donated £150 to CRY.

"I have made some more cards to sell in memory of my classmate Sam Hayes and enclose a cheque for£74.80." Lucie Hartland.

"Please find enclosed a cheque for £100. This was raised at the 2k Fun Run of the Sittingbourne Striders RunningClub on Sunday 3rd October 2004. Approximately 100 children took part and we had a great race. We chose CRY as our charity because last year a young man called Adam Payne took part in the race and had agreat time. Some six months later Adam died. He was seven years old. We asked his parents to choose a charitywhich was important to them. We wanted to take the opportunity of the race to remember Adam." Judy ThomasFun Run Organiser.

In memory of Adam Payne

In memory of Sam Hayes

In memory of Lewis Marsh

Gregg Shaw from Haxby, York, (aged 15) undertook a sponsored fun run and raised £35 for CRY.

"Our son Alex died suddenly while at school and amongst his friends, at the age of 17 inJanuary 2004.

The members of King's School Bruton ran a Sportathon in the summer, where everyonetook part in one form or another doing continuous sport from 12 noon to 12 midnight. Allsports were included from walking, squash, badminton, tennis, football, basket ball andmany other activities. They raised a huge amount which was divided between Alex andanother old boy who had died in an accident a few months previously. So I am enclosingtheir magnificent efforts of £1306.50 in memory of Alex.

I am also enclosing another cheque for £693.50 also given in his memory by manyfriends, to make the sum up to £2,000.

He was a good sportsman having represented Somerset at hockey and squash andwhen younger, chess. He was always willing to help anyone to perfect their skills in anysport with a ready smile. At home he also rode, getting the most out of some difficultponies but always giving of his all.

Jennifer and Charlotte his older sisters, and us miss his sense of humour and fun for liv-ing and it has left a huge void in our lives" Charles and Rosalind Buckler.

The parents and children of the 'Mouse House Nursery School' in London SW11 have raised £312 byselling self-portraits on tea towels.

In memory of Alex Buckler

Catherine and her friend Rosie helped at The WearyTraveller Annual Bowling Day. They were in charge ofthe balloon race. They not only sold the balloons butalso wrote out the labels and blew them up as well!They raised £142.

For a full write up see Issue 38

In memory of Andrew Ball

Mouse House Nursery School

The Stokes Church of England Primary School

Issue 39

CRY CRY


"Please find enclosed a cheque for£600 for the James Kelly MemorialFund. It was presented to me thismorning from staff and pupils at StPatrick's Primary School. They didtheir annual walk around the schoolin memory of James. Unfortunately,it was raining on the day so they hadto do the walk indoors but the children had a ball and ran havocaround the school." Elizabeth Kelly

Team Phoenix Cheerleaders have raised £170.00 at ‘A Family FunDay’ in memory of Philip (See page 26 for details of Mary’s SummerFete). Pictured right Team Phoenix Cheerleaders with Mary Abraham

and the Mayoress at Botley Park Hotel, Golf and Country Club.

In memory of Philip Abraham

In memory of James Kelly

Pupils from St Patrick’s Primary School in Kilsyth

"Enclosed are cheques totalling £3660. This money was raised for CRY by my dance school"Stargazers". We put on a song and dance show at the Theatre Royal, Margate on Saturday 26thJune called "Saturday Night at the Movies". This was done in memory of my sister Therese. There

were over 100 children involved in the show and theyperformed routines to songs from hit films."Tara Gore.

In memory of Therese Field

Lady Lumley's School held a non-uniform day in December in memory of Mike Scott.They raised £215 from their event.

Ascham House School in Gosforth, Newcastle Upon Tyne have

raised £2,597.53, this money was raised from holding various Christmas

functions within the school.

A cheque for £340.35 has been received, via Michelle Appleby, from AylesburyGrammar School, who chose CRY for their first fundraising effort.

In memory of Mike Scott

Ascham House School

In memory of Scott McCollin

Please find enclosed a cheque for £200 for CRY from the children of St. Helen's R.C. Infant andNursery School. The children were given a tube of Smarties at the beginning of Lent and encouragedto help around the home for money to fill their Smartie tubes. They also held cake sales in school andraised £804, which is being divided between three Charities.Thank you for the opportunity to help this

worthwhile cause." Barbara J Ellis (Mrs)

In memory of James Dougherty

London Marathon 2005CRY CRY



London Marathon 2005

Issue 39

CRY CRY

CRY’s Postcard Campaign in 2005CRY CRY

6) WALES - 7th January 2005Venue: Morriston Hospital, SwanseaSponsored by: INCO (International Nickel Co)

HCW Print

7) SOUTH EAST - 18th February 2005Venue: Centenary Hall, Smallfield, Surrey.Sponsored by: HCW Print - Ewell, Surrey

8) NORTH - 17th March 2005Venue: Hull High School, Analby, East YorksSponsored by: Hull Collegiate School

HCW Print

9) NORTHERN IRELAND - 1st May 2005Venue: Stormont Hotel, Belfast.Sponsored by: The Aaron Lundy Memorial Fund

The Cormac Trust, HCW Print

For more information on CRY’s Postcard Campaignvisit the CRY website



Running for CRYCRY CRY

Phil Mustow completed the Wycombe Half Marathon and raised £250. This amount was generously matched by theJohn Lewis Parntership."I can only say that I wish we had discovered CRY a great deal earlier as we hadn't realised until 15 months ago thatyou existed until my sister stumbled across your website while researching reasons how/why my son could have died,the verdict nevertheless was recorded as 'natural causes' by the Coroner's inquest after already having been throughthe torture of two post mortems and still not being able to confirm the cause of death." Elizabeth Morris.

Phyl Marrs and friends took part in the Flora Run and donated £375 of the monies raised to CRY in memory of Paul.

Ann Byrne raised £150 for CRY after taking part in the Flora Light Challenge for Women.

Donations have been received from Sarah Troon, Debbie Crowley and Mary Abraham who completed the Flora LightChallenge. They totalled £248. Angela Bird also ran and raised £117

In memory of Paul

In memory of Nicholas Morris


Chris Christou took part in the Feel Fine British 10K race. He raised a sweat and £165

Pete Reeve from Wirral raised £285 Mark Lowery from Leeds raised £101 Jonathan Hornsby raised £236.50

Ben Chaplin from Southfields raised £219 Fiona Brown from Wetherby raised £184

Lynsey Blade from Gateshead raised £112 James Williams raised £355 Michael Wood raised £248.49

Mark Robson from Chiswick raised £800 Michaela Gillett raised £300

CRY’s Great North Runners

"I enclose cheques totalling £135 for sponsorship money raised through taking part in the Nottingham Robin HoodHalf Marathon. I would like to donate this to CRY." Lisa Barton.

"I have pleasure in enclosing my donation to your charity. I raised the money by doing The Manchester 10K Run. It's thefirst run I have ever done - I even used to skive P.E at school! I am an anaesthetist and know of several people person-ally and professionally who have died of Sudden Adult Cardiac Death and I think your charity is doing a good job. Ihope the money can be put to good use, I raised more on the web site, which I found very easy to use, Thanks.Dr Helen Bird. Helen raised £120 + her website donations.

Nicola Wilcox from Stoke Bruerne took part in the Flora Light Women's Challenge. The support from her sponsorsraised £665 for CRY.

Sisters Alison Honour and Carolyn Brew ran in the Great North Run to raise money for CRY.“We ran in memory of James Cameron Lodge, son of a friend and colleague of Alison. Jamesdied last May, aged just 4yrs. James was a bright lively normal child who was very rarely ill. Heloved to run, swim and climb and lived life to the full. One morning James woke up in distress;he couldn’t get his breath as his heart had stopped. James died in his father’s arms while wait-ing for an ambulance. All attempts to resuscitate him failed A detailed post-mortem discoveredJames had Cardiac Rhabdomyoma - tiny tumours that can affect the electrical impulses of theheart. In effect this causes a ‘short circuit’ and the heart stops beating. There are no clinicalsymptoms and the condition can only be detected by an MRI scan or post-mortem” AlisonHonour and Carolyn Brew They have raised sponsorship money totalling £3,392

In memory of James Cameron Lodge

Jane Fergie from Salford Quays, Manchester has raised £288 by completing the 10k Great Manchester Runin memory of Joe.

In memory of Joe Sales

Our FundraisersCRY CRY

"I enclose a cheque for £300, which is the share of the proceeds from a Charity ArtExhibition I held as a tribute to my son and his two sons, who all died within 18 months ofeach other.My youngest grandson, Ben, died suddenly in his sleep, aged 24. As I am aged 82, I could not take part in marathons or bike marathons, as other mem-bers of my family have done to support CRY - as an artist this was my contribution tosuch a good cause." Mrs Joyce Thorn.

" The SRC Ben Thorn Cycleothon 6took place in September 2004, and

was a great success. Over 100 riderstook part, and later in the day there was a

barbecue for family and friends, which car-ried on till the early evening with live music and plenty of food anddrink, very generously supplied by Dave and Alison Parker at theirhome in High Salvington. A raffle and an auction of a signed foot-ball and two framed prints of racing car drivers brought in evenmore funds.

SRC is Dave`s recycling company and every two years Dave and Alison organise a charity bike ride, as they arefriends of ours and knew Ben. We would like to send a big thank you to Dave and Alison for all their help in raising somuch money in memory of our son Ben."Veronica Thorn

The route was from Guildford to Bramley via Downs Link bridleway and up over the back of Steyning to Parkers atHigh Salvington. Approximately 40 gentle miles - almost traffic free. Transport was arranged bikes and cyclists leavingHigh Salvington at 7.30 hrs sharp!Extra posterior padding was highly recommended to protect the lower parts and together with some form of lubricant -bananas - old engine oil etc!

So far the Cycleothon has raised over £9,000.

In memory of Ben Thorn

Photo of 2002 Cycleothonists



Mrs Sheila Sinclair won a competition and part of the prize money was a donation to a charity of herchoice. She nominated CRY to be the recipient of the money. £100 was donated in memory of Dominic.

Margo Wright has raised £200 for the Mandi Blake MemorialFund from the sale of merchandise.Margo has sent in cheques totalling £258 which were raisedduring the Redcar Dip on Boxing day and the sale of soft toys.Middlesbrough Teesside Lions Club have forwarded £85.34, asrequested by Margo, being her share of the sponsorship money

raised.

"Please find enclosed a cheque for £117.It has been collected in the Beacon Public House." Julie Hatton.

In memory of Mandi Blake

In memory of Leon Ashley Manners

In memory of Dominic O’Loughlin

The North Sea was cold, but theysaw a lovely Rainbow.

"Please find enclosed a cheque for £1,000 which Speechly Bircham would like to donate to CRY. The money wasraised from the firm's Christmas charity raffle. CRY was chosen in memory of Robert Kirby, the son of one of thePartners here." All at Speechly Bircham.

Barbara and Dennis have sent a cheque for £152, being the proceeds of a raffle they held in December.

"We have emptied our collecting box once again and with the £130.43 from the box, Barbara and I havetopped this sum up to £200." Barbara and Dennis Merchant.

In memory of Robert Kirby

In memory of Ian Merchant

“Please find enclosed another donation for £191.24 raised by my friends and colleagues at the RoyalBank of Scotland Cheque Centre in Birmingham. Like last year we held a special Halloween dressdown/up day at the Cheque Centre. As you know it is still very difficult for my family to come to termswith Alison's loss, but it gives us great comfort when others help by supporting your just and great cause

by raising much needed funds" John Linforth.

In memory of Alison Linforth

Marie and Ted Lloyd held a Linedance Party for Marie's 60th birthday and raised £650. "Marie's son Kevin died in1983 from what was believed to be WPW although this could not at that time be confirmed. He was 11 at the timeand was at Burlish Middle School, Stourport-on-Severn, Worc. He was sitting at his desk reading. Although a nurseherself at Kidderminster Hospital when Kevin died, 22 years ago she says she felt very alone. Her gift to CRY inmemory of Kevin is to support the great work CRY is continuing to do." Diane Tolley

In memory of Kevin Lloyd

"Our beloved son Richard died suddenly on 9th August 2004 from a condition called Myocarditis. He was just 26years of age, a vibrant, energetic young man with a fine future ahead of him. He was an extremely fit, sports enthu-siast, so full of life. He left a partner and a 9 week old son Jack. He died with Jack in his arms. Before this tragedy we had never heard of Myocarditis or the other related sudden death syndrome causes. Wehave in recent weeks read a great deal about similar tragedies and have been assisted in coping with our grief by aCRY counsellor. We would like you to accept the enclosed cheque for £1,000 to assist you in your cause." John, Pam and JoanneWhitehead.

In memory of Richard Whitehead

Margo’s Boxing Day Dip



Our Fundraisers

Issue 39

CRY CRY

"On behalf of Armagh Sports Forum, I have included a cheque to the value of £750 to bedonated to CRY on behalf of the McCall family in Armagh.

John tragically died while playing for his country and his family has asked Armagh SportsForum to donate the money to your charity in his memory." Gerard Houlahan.

"Would you kindly accept the enclosed cheque in memory of my dear son Ian who will be 27 on 16thMay 2004. Ian's birthday is always a very difficult time for me but, knowing that I am not alone and

there are people who understand exactly how Ifeel is a great comfort." Pat Strange.“I enclose a photograph of myself (In the middle)with two friends taken at Walthamstow DogTrack. Ian’s dad David who is the SocialSecretary for the Chingford branch of theFederation of Independent Driving Instructors (FIDI)arranged the evening. We thought it would be an ideal opportunity toraise some funds for CRY by having a small raffle”. Patricia Strange.They raised £130"Would you kindly accept this cheque for £100 in memory of my

dear son Ian. Ian's birthday is on 16th May and although he cannot be with me in body I know he is celebrating his28th birthday in spirit. Thankyou for all the support you give to parents, relatives and especially siblings. I don't knowwhat I would have done without your help and comfort when Ian died. Keep up the good work" Patricia Strange.

"Enclosed is a cheque for £400, which I would like to donate in memory of my brother JamieSimpson.I work for NatWest bank and every Friday we have a casual dress day for which the employ-ees have to pay £2 every month, the proceeds of which go to a nominated charity.I put CRY forward this month, as you can imagine it is something very close to my heart and Iknow all donations go towards helping other families not to have to go through what mine havebeen through" Rhia Simpson.

In memory of Ian Strange

In memory of Jamie Simpson

In memory of John McCall

Mrs Kirsty Liddell has sent us a donation of £1,450 in memory of her beloved husband Jim, who died suddenly, aged37, on 12th September 2004. The Royal Bank of Scotland, where Jim worked, organised a book of condolence for thefamily.

In memory of Jim Liddell

A donation of £500 has been received from Betty de Berry in memory of Phillip Holland.

In memory of Philip Holland

“I am now pleased to be sendingyou the monies we have raisedin James’ name for CRY. TheTennis Day held on 5thSeptember raised £444.12and the Sailing Day held onthe 18th September raised£230. The cheques enclosed total£674.12”. Gill Wood. Gill and her team alsoraised lots of awareness.

In memory of James Wood

The Sailing Day WinnersThe Tennis Winners


CRYCRY

Our Fundraisers

Wendy (Samuel’s mum) has sent in a donation for hisbirthday. He would have been 13yrs on the 24thJanuary. Samuel died on 2nd May 2003 from SDS.

Chris Maxey, a member of the Pride of PilsleyLodge, took part in sponsored 'beard and headshave' in memory of Sam Hayes. He raised £220

for CRY.

"Find enclosed a cheque for £140. This is inmemory of my great nephew Samuel Hayeswho died a year ago from Sudden DeathSyndrome. I wish this to go to funding moreE.C.G. machines. I have fund raised this fromfriends and neighbours, I wish it was more"Joan Peterson.

Beryl Hayes and friends of St. Mary's Church donated £280 to CRY in memory of Sam.

"St Mary's Church, Pilsley has nominated you to receive a proportion of our charity givingthis year. This is largely on account of Sam Hayes who died here last year, aged 11. StMark's Church, Handley, has also nominated CRY. Please accept cheques for your valu-able work, £375 from St Mary's and £60 from St Mark's.

A cheque has been received for £115 from Wendy Hayes and Mrs Richards in memory ofSam. The money was raised at Richards Nurseries, Holmewood.

"Redcar and Cleveland Council have contributed £1,000 towards thecosts of our CRY Mobile Screening which was held on 2nd October".Maralyn Bowen.A CRY Charity Night was held at Marske Cricket Club on 9th Oct.Attractions included a Pie and Pea Supper, a raffle and Vocalist PhilHarvey (pictured right). The night was organised by Garry Pearsley,with special thanks to George and Linda Morriss, the club’s Steward

and Stewardess. They raised £296.A donation of £500 has been received by direct transfer from Du Pont in

memory of Ian. "Please find enclosed a cheque for £100 for Ian's memorial fund. It is donations from ourscreening on Saturday. " Maralyn."Martin Cooper used to work with Kenny before he moved over to the Redcar Steelmaking Plant , so he organised anight for CRY. It was great the group was very good and the buffet was lovely, we all had a brilliant night out. Martinwas helped by his wife Marry Cooper also by Jenny Wesson, Pauline Palmer, Amy Palmer, Les Graydon and Mike..Hopefully this £1130 will go towards us having another screening next year" Maralyn.Mick and Heather Flanigan from the Barnacle Bills (South Bank) Pub have raised £100 for CRY.Maralyn has sent in two cheques for her son Ian's Memorial Fund. Carl McCormick, who was a friend of Ian's, savedup all his spare change which amounted to £240 and another cheque for £40 was donated from Kenny's work mates atCorus.

In memory of Samuel Hayes

In memory of Ian Bowen

Mrs Richards - Sam’s Grandmother seen

here at the nurseries

"A car boot sale was held at Tesco, the total amount raised was £1409. Special thanks to The Kettle &Stove for the donation of £100, T. Gillam for giving so many new items to sell at the sale, and finally toall the Tesco staff for all their continued help and support". Jane Howard."Please find enclosed a cheque amounting to £372. A.Hammond and myself had a Christmas fairwhich raised £120, also Time at Tesco's gave things to sell at a car boot which raised £252." Jane Howard.

In memory of Stewart Howard


Our Fundraisers

Issue 39

CRY CRY

"I now have pleasure in enclosing the Rowntree Players' cheque for £660. From the funds raisedthrough a 'bucket' collection after every performance of our pantomime 'Dick Whittington', and the nettakings from the 'Charity Night' of the same production, we have found ourselves able to support bothCRY and another local children's charity." Miss Shirley Patrick (Treasurer Rowntree Players).Julie Lister (Jamie's Aunt) and friends organised a fundraising event. "We had a super night and as

well as raising money for CRY everyone had a wonderful evening" Julie Lister. So far they have raised£291.50, with more to come.

"I have great pleasure in enclosing a cheque for the amount of £290, which is the contents of the CRY"Collection" Whisky bottle from the Willow Tree Pub in Langley, Slough. This donation is the result ofcontributions from the Willow Tree customers over the past 18 months." Richard Haynes

In memory of Madeleine MulcaheyHugh and Jane (Madeleine's parents) organised a 'Sponsored Run' and raised £200.00.A donation of £988.50 has been received from the Planning Team who took part in the City ofLondon Race.Alexandra Elgood took part in the Flora Light Challenge and raised £1,104 with more to follow.Customers of the Tite Inn at Chadlington, headed by the Landlord Michael Willis, organised a 120mile bike ride through Oxfordshire to Hurley, Hampshire and back again. The money raised wasshared between Oxford Association for the Blind, Katharine House Hospice and CRY. £1678.75 wasdonated to CRY.

In memory of Jamie Bucknell

"I enclose a cheque for £139 - which is what I raised by doing the Great North Walk. As I work for Abbey National they will match what I have raised." Brenda Plowman. Miss Brenda Plowman has sent in a cheque for £139 which was given by the Abbey National as amatched donation for monies already raised when she took part in the Great North Walk in 2004.

In memory of Colin Doyle

In memory of Brian Southern

A donation of £500 has been received from Mr and Mrs Thompson, from Crowborough, East Sussex. in memory of their beloved grandson Bas.

In memory of Bas

Members of the Two Gates Bowling Club have held an extremely successful bowlingmatch and a buffet lunch afterwards. The event was organised by Marie Yates andraised £214.Irene has sent cheques totalling £137.68. The money was raised from collectionboxes at the Academy 404. Daniel Thwaites Brewery of Blackburn have donated £3000 to subsidise our next

screening weekend to be held in September or October 2005. "We have supported hun-dreds of worthy causes down the years but this is a very special situation where the lives of

young people in our region are at risk. We are obviously delighted to be able to support CRY in the excellent workthey do" Mr. Baker, Chairman.Neil's cousin, Christian Davies of Christian Davies Antiques of Preston, Lancs, has donated £100 being the fee of avaluation that he carried out.A donation of £123.50 was sent in via Granville, from Cavalier Carpets, who donated the money to CRY instead ofsending each other Christmas cards. A donation has been received from Janette and Craig Hernen of £190 in memory of Steven Burrows. The money wasraised at Craig's 40th birthday celebrations (Steve's brother-in-law).

In memory of Neil Wickers and David Staff


"I would like to donate this cheque in memory of my son who died last year from a cardiac arrest while playing foot-ball, he was 21 years old.I had a coffee morning last week and a raffle to raise money for you, and if it helps to save another young person’s lifethen that's my wish. My son's name was Paul and I just want to save parents going through what we are goingthrough". Moira Rafferty. Moira and her team raised £640

"John and I have endeavoured to do a little fundraising on CRY's behalf by holding raffles and collections, nothing spectacular but every penny helps and it also raises awareness of our organisation".Ursula and John Bick They raised £200

Bar staff and regulars at the George and Dragon pub in Norwich, have held their second pool tournament in memory ofWinkle. Two years ago Winkle died in the pub from a heart attack whilst playing pool. "This year the competition was alittle later than planned, because Winkle's 14 year old son was seriously ill with a brain abscess. Thankfully he is making a full recovery. Due to the competition being held on Bank Holiday Weekend this year we raised £116. MaryShaw (Licensee George & Dragon)

"The 20th May would have been our son Joe's 24thBirthday, he always picked his favourite birthday tea. TheLeeds Half Marathon is also run in May and again fellowstudents of Joe from Trinity and All Saints College whoare all teachers now paid a touching tribute by running for

CRY. It was a really hot day and they all did so well. 13.5miles around Leeds is hilly and hard going, but they did it

with cheery faces (and aching limbs too I expect). Many thanksto them all. Katie dropped her cheque in through kind sponsorship for £100,also one from Paul and Sharon for £50. As well as the marathon, JoanneWard did an end of college year book which she donated to Joe and sendsa cheque to CRY for £89”. Kath and Andrew Spivey.

"We are so pleased that people who have suffered the same trauma as we did nineteen years ago can now get helpand advice. When our son Kevin, age seventeen, died in February 1985 we were totally baffled. We had not had anyexperience or knowledge of one so young dying suddenly, apart from cot death. The coroner's report was "AcuteMyocarditis". It left us still questioning and wondering if we could have done anything to prevent it. Your booklet con-firmed that myocarditis can be caused by a virus." Alan and Peggy Sands donated £200.

"I enclose a cheque for £140 towards your funds. We raised this money by holding an Easter raffle withcolleagues from the Education Department of Durham County Council, where I work. All moneyraised from the raffle has been passed to CRY. The raffle prizes of an Easter rabbit, duck and choco-late eggs were donated by my husband and I. This donation is in memory of David Elliot, my step-son, who died aged only 34 years in July 2002 from an undiagnosed genetic heart condition, leavinga wife and 2 boys aged then 6 and 8 years. Anything that my husband and I can do to

support CRY in your efforts by fundraising will be done, in the hope that other families can be sparedthe heartache and grief that we have suffered". Eileen Elliot

"Please find enclosed a cheque of £162.50 which was raised through an auction at my sister’s wedding. It is in memory of my partner Mike who died on 13/10/02 aged 24." "I hope with this money we can help people who have suffered a loss like mine, and for others prevent it from happening." Juliet Bell

Our FundraisersCRY

In memory of Mike Ruinet

In memory of Kevin Sands

In memory of Michael ‘Winkle’ Kent

In memory of David Elliot

In memory of David Bick

In memory of Joe Spivey

In memory of Paul Rafferty

From left to right they are - Simon, Steve,Mark, Neil, Andy, Katie and Mark

The Leeds Marathon Competitors


Our Fundraisers

Issue 39

CRY CRY

Aaron died on 18th September 1999. Since his death Aaron’s dad John Lundy (CRY’sDivisional Representative for Northern Ireland) has held several Raising Awareness andfundraising events. In this time John and his team have raised £8945.On the 9th August The Aaron Lundy Memorial Golf Tournament, a junior golf tournament washeld at Portstewart Golf Club, where Aaron was a member. This tournament brought together40 junior golfers from 10 golf clubs in the North West.Belfast Marathon in memory of Aaron Lundy. The sun shone on the 2nd May 2005, when fiveamateur athletes took to the streets of Belfast for the city’s 24th Marathon. Daphne Morton, Claire Duffy, CatLundy, Susan Duffy and - the onlymale – Alex Morton were the fivemembers of The Teardrops. Between them, the relay team ran the26 miles of the course in the veryrespectable time of 4hours 27mins 18seconds. The Teardrops set out to raise moneyfor CRY and in particular The AaronLundy Memorial Fund. The team far exceeded their ownexpectations and raised a grand totalof £1370. The photograph (right)shows a very tired but happy team.

In memory of Aaron Lundy

The Belfast Marathon Team for Aaron

Mr Richard Southey sadly passed away aged 68yrs in May. His wife has asked for all donations at hisfuneral to be placed in Philip's memorial fund as she knew Philip and she hasworked at the school for many years. £870 was collected.Through Mary (Philip's mum) Sainsburys have awarded CRY £200.00 fromtheir 'Penny Back Scheme' and Carole Saunders has donated £100.Mary has been working very hard for CRY. She has organised a huge Charity

Funday, which was held back to back with her Annual Strawberry Tea held ather home. Mary has also been raising the profile of CRY, and again has beenawarded 'The Local Heroes Sainsburys Award' (Sainsburys donated £200 in Philip'smemory). Mary and her team have raised £1106.39“I am enclosing the proceeds of my first two events this year, as I have set myself a target of doing

10 fundraising events in this 10th anniversary year. We did our barn dance on 30th April raised £276, great fun with the'Cornrigs' band and our musical concert with 'New Music Makers Choir' on 7th May raising £246. We had a delightfulevening and a reasonable turnout. The choir were very supportive and enjoyable." Mary Abraham.Mary has sent in a donation of £148 which was raised from collection boxes and general Christmas donations forPhilip's Memorial Fund. Mary has again been awarded the Local Heroes grant from Sainsburys, who have donated a further £200.


The New Music Makers Concert raised £246Mary and her team of Ladies Flora Light Challengers


The ‘H’ Howard JenningsCRY Memorial Trophy 2004CRY CRY

This year's trophy winner was David Anderson from Computacenter. Second was last year's winnerLee Scarborough, and third was David Chambers. The ladies medal was won by our youngestplayer, Roxanne Masters. The winner of the knitted golfer was Dave Ashley!! We raised inexcess of £2,700, including £400 from Lloyds TSB. 64 players took part in the event.

Thanks as always go to Carole and Ray Haylock and Angie Masters for their continued support.Donations of raffle prizes and trophies were made from numerous sources including AtlasCopco and Hemel Trophies and Jewellers.

A big thank you to all who continue to support the event by playing in the tournament, servingcoffee at the ninth hole, raising money through sponsorship, selling raffle tickets, etc.

The 2005 tournament will be on Sunday 18th September at Little Hay Golf Complex. Anyone interestedin playing should contact Keeley Ashley via the CRY office.

Lee Scarborough, runner up.

Team Atlas Copco.Keeley, Terry & Phyllis...

What a great Team.

David Anderson.The Trophy Winner.

The Ladies Medal Winner.Well done Roxanne.Well done Daddy.

The Murphy Team having beenrelieved of all loose change.

That’s it. I’ve had enough. Yes we did need umbrellas.Kieren & Billy trying to match the smile

on the CRY Heart.

The Gordon Family......All the way from Scotland. The Masters Team. Dad and the old faithfuls.


Our Fundraisers

Issue 39

CRY CRY

"Please find enclosed our donations gathered for CRY (£850). We tragically lost our beloved elder son Andy on 5thMarch 2002. He was only 21 years of age and was a young, fit and apparently healthy young man with a greatapproach to life. Andy was extremely happy and popular with many friends and had a steady relationship with his girl-friend Kirsty. He had no history of illness. His heart stopped while in bed asleep during the night and after two successive postmortems the cause of death could not be ascertained so you can imagine the anguish we felt and will still continue tofeel forever. Andy's spirit however lives on through his younger brother Chris, Kirsty, his friends and family. He will never be forgot-ten." Drew, Sally, Chris and Kirsty.

In memory of Andy Shearer

"Our son Adam died on 30th July this year after suffering a heart attack. So far, no reason has beengiven for his collapse, so we are finding it very difficult to come to terms with. Information on your web-site has helped us a lot in trying to answer some questions. Instead of giving floral tributes at Adam'sfuneral, we requested that people donated to 2 charities that we nominated - one of which was CRY.Attached you will find cheques to the value of £500 - I hope this will help in some way with the excel-lent work you do." Mrs. Julie Donnelly.

"Please find enclosed a chequeto the value of £140 which was

raised by holding a raffle at Old BrockleiansRugby Club, Eltham in memory of our sonAdam Donnelly who sadly passed away froma sudden heart attack in July 2004 at the ageof 17" Jed & Julie Donnelly."We had a presentation evening on 7th Maywhen our Church Social Club gave a chequeto CRY for £2000. The money was raised byholding a race night at Our Lady of the RosaryParish Social Club on Saturday 20th May2004. Anna Takkula very kindly came along torepresent CRY and gave a very movingspeech about her own personal experienceand how she got involved with CRY and gavean overview of CRY and their objectives - itreally was an excellent speech." Julie Donnelly.

In memory of Adam Donnelly

The cheque was presented from the Church Social Clubto CRY Supporter Anna Takkula on behalf of CRY

"Please find enclosed a cheque for £1500 raised so far for CRY. The money was raised via a danceand a raffle and Mrs. Davinda Palak who held an Indian cookery demonstration raised £500. ""Jenny was 19 years old when she died in her sleep. She was a 2nd year student at ManchesterUniversity at the time studying English and Spanish. Jenny was a keen swimmer and skier andhad been fit and healthy all her life." Sandra Pearce."Please find enclosed a cheque for the sum of £250. The money was raised through sponsorship,

raised by my wife Kerry, to run the Lincoln 10k Road Race in April '04. She decided to run inmemory of our niece Jenny Pearce who passed away suddenly last October. Since Jenny's death

CRY has been a source of great support to her mum Sandra and the information on SADs has helpedthe whole family come to terms with our sad loss." R.W. Creppy.

In memory of Jenny Pearce

A donation of £100 has been received from Slater Fox (Insurance Brokers) Ltd. in memory of Laura.

In memory of Laura Bennett


Our Fundraisers

Issue 39

CRY CRY

"I am writing to you as the daughter and executor of my late Mum's Will, Kathleen Barlow who died on September 7,2004 with all her family around her. It was her express wish that she only have immediate family flowers at her funeraland any donations given by family or friends be shared between CRY and the Little Sisters of the Poor, Bristol. I amenclosing a cheque for £200, and this includes a very generous donation of £85 from her friends and neighbours ofRene England House." Christine Cockell.

A cheque has been received for £500 from the Royal Bank of Scotland, Southof England Corporate Services Centre, via June Dollard, which is sponsor-ship for the postcard launch on 29th October 2004 in Oxford. Employees of the South of England Corporate Service Centre donated

£236.12 in memory of Scott McCollin who tragically died in November 2002.

Mrs Marion Lee took part in a sponsored slim in memory of her son David and raised £254.

Philippa (Jeremy’s sister) and Scott Hendersonhave raised £1687.95. Instead of wedding pres-

ents they asked family and friends for a dona-tion to CRY in memory of Jeremy.They set up a fundraising page on justgiv-ing.com which they found very effective.The Royal Bank of Scotland, where they

both work, has donated £1000 through theirCommunity Cashback Awards scheme.

CRY’s apologies to Philippa and Scott for wrong-ly reporting that they had raised £100 in Issue 38.

A donation has also been received for £250 from Mr T Richards forthe Jeremy Cole Memorial Fund.

Mrs Celia Byford-Fox has sent a donation for £150 in memory of her son David.

A donation has been given by R J Bray & Son of £500 in memory of Tabitha Dee Shapland, aged 14 years."Please find enclosed cheques to the value of £410. The money was given to us on the occasion of our recent GoldenWedding celebration in lieu of presents. We make this gift to CRY in memory of our Granddaughter, Tabitha Shapland,who died in her sleep on the 20th March 2004. This is also in recognition of the help that you are giving, to Jayne andAlex Shapland and our family, following the tragic loss. We wish you every success in your excellent efforts to helpbereaved families." Mavis and Derek Handover.

Roy Ball and Pam Jay have raised £310 after Pam had a 'Dress to Impress' birthday party.A donation has been received for £250 via Mr P Astbury , The Sutton Arms, with help from theMidlands Davison Motorcycle Club in memory of Andrew.A donation of £100 has been received from Helen Strong of Wellconstruct for the Andrew Ball

Memorial Fund.

In memory of Scott McCollin

In memory of Philip Barlow

In memory of Andrew Ball

In memory of Tabitha Dee Shapland

In memory of David John Byford-Fox

In memory of Jeremy Cole

In memory of David

Philippa and Scott on their big day

"Please find enclosed a cheque for £160. This money was donated by the members of C3 Imaging, inFormby, Merseyside, in memory of my son Paul who died 16th January 2004, aged 30. It was raised byputting their small change in a big whisky bottle. It is a magnificent amount as we are only a very small

firm." Frank Short.

In memory of Paul Short


Skydiving for CRY

Issue 39

CRY CRY

Matt Kennedy from Uxbridge, Middlesex,raised £350 by executing a Tandem Skydive.

Marine Rehman from Chesham has enjoyedthe experience of a Tandem Skydive anddonated £350 to CRY.

Anna Rosenberg from Crewkerne, Somerset hascarried out a Tandem Skydive and raised £350.

Mike Cummins of Ruislip hasraised £921.40 from sponsorshipof his Skydive.

Lorraine Lake from Aylesbury performed aTandem Skydive and raised £350 for CRY.

Wayne Munton from Holbeach, Spalding has executed a Static Square Parachute Jump andraised £1273.

Chris Morgan, from Bubbenhall, Coventry,performed a Tandem Skydive and raised £350.

Jodie Corbishley from Newport, Shropshireperformed a Tandem Skydive and raised £350.

Kelly Gardiner, from Purfleet, Essex, took part ina Tandem Skydive and raised £365 for CRY.

Laura Archer, from Kenilworth, performeda Tandem Skydive and raised £540.

In memory of Matthew BrownSue Warner took part in a Tandem Skydive to raise funds forher late son Matt Brown. She raised a total of £1,100.

Sonal Fatania from Rushley Mead, Leicester tookpart in a Tandem Skydive and raised £457 for CRY.

David Woodfinden from Stockport carried out atandem skydive and raised £350.

Farah Hussain from Trebanos, Pontadardaweperformed a Tandem Skydive and raised £350.

Kelly-Ann Donald from Portlethen, Aberdeenhas carried out a Tandem Skydiveand raised £779.

Steven Moore from Northwich, Cheshireperformed a Tandem Skydive and raised £350.

Katie Goddard of Blackfield, Southampton has raised£340 after undertaking a Tandem Skydive.

Rachel Sinfield from Aberdeenhas raised £478 by performing aTandem Skydive.

Naledi Nickerson has carried out a Tandem Skydive and raised £350 for CRY

Martin Dawson from Driffield, East Yorkshire carriedout a Tandem Skydive and raised £510 for CRY.

Tess Rawlins, from London, completed a TandemSkydive for CRY and raised £600.

In memory of Damien KostenCRY CRY

I'm Bob Bailey from Folkestone, Kent. I am aretired ambulance technician with 28 yearsservice and I will be 65 in July. I am doing aRowathon of 1,000,000 (million) metres on aConcept rowing machine. This will take about 4-5 months to complete. I do this on a daily basisof 10,000 metres a day at Folkestone FitnessCentre. All this is being done in the memory ofmy nephew, Damian Kosten, pictured right withhis fiancée, Laura.

Damian was a normal, happy young man whohad along with his fiancée Laura, a brightfuture. He was taken ill last August, admitted toSouthampton general hospital and after severalweeks transferred to Harefield hospital. By thenhe was a very sick boy and had a series ofoperations including the fitting of a Jarvick heartpump. He was in intensive care most of thetime he spent in Harefield. Following one ofmany infections his condition worsened andwith his grandmother and great grandmother at his bedside he passed away on April 2nd, aged 23. As you can

imagine his wholefamily and fiancéeLaura are totallydevastated by hispassing.

I would like tothink that anymoney that Ican generate for CRY may help prevent another tragedy,another younglife lost.

Many thanks,Bob.

Bob has had hisown onlinefundraising pagein memory ofDamian set up by CRY.

Bob has raisedover £2,000


The 3 Peaks ChallengeIn memory of Andy GardCRY CRY

There were six of us attempting the 3 Peaks Challenge. Myself(Steve Sparkes), my colleague Simon Clapson, and four people Iused to work with - Richard Allen, Geoff Pugh, Ryan Lingley andNick Wright. There was also a vital seventh member of ourteam - our driver, Baz Bark.

When we woke, we stepped out of the bunkhouse and could seethe summit of Snowdon in the distance and in the cloud! Someone

the night before had cunningly arranged for the landlord at the pub tocook us a fry up, so it was back to the pub again for breakfast.

Before we knew it, the time was 10.30am, and we were heading up the Pyg Track on Snowdon. We made fantastictime to the summit - in only one and a half hours!

We didn't have long at the top, and luckily there was no fantastic view to keep us there either - just grey murk andcloud. In seemingly no time at all, we were back in the van, and making our way up to the Lake District. Snowdon climb time - 2hrs 55mins.

We arrived in the Lake District at a few minutes past 6pm, after a minor hold up on the M6. Soon we were out of thevan, and making our way up a very hot and humid Scafell Pike. Due to odd weather conditions, mist was rising in clouds off the lake due to a warm evening, and there was a layer ofcloud above us. I liken our progress to trying to walk up a down escalator in a sauna with a rucksack and lead boots

on! The going was not very easy.......

We made the summit by 8pm, and were back down again by 9.30pm. Now it was timefor the very long drive to Ben Nevis. Scafell Pike climb time - 3hrs 55mins

By this time, I was starting to feel a little tired, a lot hungry, and - due to Baz's insanelyfast (but safe and legal!) driving along bumpy, twisting roads - very, very ill. Luckily Ifell asleep quite quickly. I remember waking up at a petrol station somewhere inScotland at about 1am. I opened the back doors of the van, and stepped out.Unfortunately, due to hours of over use followed by hours of stiffening up, my kneeswere not working and I ended up in a heap on the floor next to the diesel pump!

My next memory was at 3.05am, being shoved from the warm van into the dark, cold foothills of Ben Nevis. Headtorches on, we started what seemed like a journey to Middle Earth. It wasn't too long until we could see, and weseemed to be making good progress. That was, until we started to encounter the white stuff - and I don't mean milk!The last hour of the climb was going through snow that in some places must have been twelve feet deep. We knowthis, because Nick decided to fall into a snow hole! A little shaken, but OK, we got him out and carried on. The sum-mit was a very welcome sight, as I think I can speak for all of us when I say it was bloody cold. We were starting to getcold and wet - not a nice situation. At 6.05am I was the highest person in Great Britain - quite a feeling!

The descent was starting to take its toll on Simon's knees, and the rest of the group went on ahead to get some veryimpressive 3 Peaks times. With a helping shoulder from myself, Simon managed to hobble the last hour of the moun-tain - sometimes backwards in parts where this made the descent easier on his knees. It wasn't too long until we wereagain in the foothills, and passing day walkers on their way up, which gave us a boost.

We finally completed the 3 Peaks Challenge in 23hrs 23mins!

I would like to give out an extra special 'Thank You' to Baz.At the time I wanted to kill him because of his insane driving,but without his efforts we never would have completed thechallenge within 24hrs. We only had 37 minutes to spare,and Baz certainly made that up somewhere in the drive.Cheers,Steve SparkesFor the full write up please visit the CRY Website

The ascent of Snowdon

The boys up Scaffell Pike

Coincidently by the time that they had completed their challenge... It was opening time... Mines a pint!


In memory of Julian WortCRY CRY

Shirley Wort was very touched when she received the following letter from her neighbour, who used tolive next door when Julian was growing up.

"Dear Shirley,I have spoken to you on a few occasions and am in wonderment at how you have kept going inpursuit of CRY. (Those who have suffered the loss of a young family member from cardiacdeath). It must hurt inside every time when you remind yourself of how it happened to yourselfand Dave in the loss of your dear son Julian. I am in awe of you that you drive yourself on for thiswonderful cause.I had a letter from David Heath informing me that the Under Secretary of State for Public Health isdealing with this campaign, and that the government is aware of these issues, and that a new N.S.F.Chapter is due to be published in March 2005.With this in mind, Shirley, I thought that there was one way I could help you, in a small way. I decided that on my 70thbirthday I would ask people that instead of buying me presents that they donated money for this outstanding cause,Cardiac Risk in the Young. CRY.I have enclosed the sum of £100 that was collected. This is for the memory of Julian and in pursuit of the terrific workthat you do for the cause”. Brian Wilkinson

Chris donated £500. "I was very overwhelmed when it was given to me, Chris was Julian's best mate, and he still is agreat comfort to us, always visiting us when he is on leave (he is in the Royal Navy). His grandmother passed away afew months ago and left himsome money and he has donatedthis wonderful amount to Julian'sfund. What more can I say!"Shirley Wort.Shirley has sent cheques totalling£1,786.50 for Julian’s Fund. Theamount was raised in two events,both held at a local pub (The Millat Rode). The landlord, PaulClark, organised two events - TheFirewalk in August 2004 and aDuck Race in October.Joan and Alan Gaynor celebratedtheir Wedding Anniversary onBoxing Day, and held a party onJanuary 8th. They decided theydid not want presents and askedfor donations in lieu of gifts. Theypresented Shirley with £370 forJulian's Memorial Fund. A further donation of £1,000 hasbeen received via Shirley fromthe Land Warfare Centre atWarminster, making a total of£1309. "Bob Morris who works for the Ministry of Defence, knew Julian at school and when he saw our appeal lastMarch in our local newspaper for the Defibrillator, he contacted me regarding fundraising throughout the year. His col-leagues held coffee mornings, had collection jars etc and raised the £309; their bosses Landmarc Support Servicespledged the corporate donation of £1000, which was magnificent." Shirley Wort"Please find enclosed cheque for £101, this amount was raised through a Golf Match that was played at Frome GolfClub on Saturday March 5th. Two of the Golfers, Pete Rumming and Dave Francis share the same birthday, and aspecial match is held annually with many members of the golf club playing for the Rum Flan Trophy. They raised theenclosed amount for Julian's Memorial Fund, and my husband and myself were invited along to their birthday celebra-tion at their local pub that evening where they presented us with the money" Shirley Wort



Debbie Loveday has donated a further £337.50 towards Chad’s Fund. "Please find attached our cheques equalling theamount of £160, requested to be added to Chad's memorial fund." Debbie Loveday.

All Saint's Church, Warlingham has donated £200 in memory of Phil. All Saints make a charitabledonation each Christmas. "The vicar was at university with me and chose CRY this time" Jim Holland.

In memory of Phil Holland

In memory of Chad Loveday

I enclose a cheque for £450, this money was donated in place of flowers at our son’s funeral. Our son Richard died onthe 28th October last year while playing. Richard has always been a very healthy and energetic boy, he would neversit down when he could be running about.It was not till after his post mortem that we discovered that he had had a heart abnormality since birth. His cause ofdeath was put down as "Acute Cardiac Dysrythmia" and Endocardial Fibroelastosis. His death was so sudden andvery unexpected that it has really hit us hard. We were given your booklet and it helped explain a lot although the question "Why?" can never be answered. Onbehalf of my wife and myself I would like to say thank you for the information and hope this small sum helps in someway." J.P. Bethell.

In memory of Richard Bethell

"Enclosed is a cheque for £300 collected by Lloyds Bank for a dress down day organised in memory of myson James. It was presented to Paula (James sister). Also a cheque for £30 donated to myself by agrateful customer whom I catered for with a buffet. £1462 was raised by 38 family and friends walking 8miles in memory of James". Ann Wilson"Enclosed is a cheque for £565. This was raised with a charity night we held in memory of Jimmy. It wasa great success with the band 'Male Order'. I am hoping to hold a charity walk again this year as we raisedquite a bit last year for CRY." Ann Wilson."Enclosed in a cheque for £436 raised for Jimmy's Memorial Fund through bag packing at Asda, Washington, with fam-ily and friends." Ann Wilson.

In memory of James Wilson

"I feel I would like to do more and did write to my M.P. earlier this year but sometimes feel so sad and alone that I don'thave the strength at times. Other times I feel more positive and in the summer I had a car boot for CRY so I would likeyou to accept this cheque for £250 in memory of my son Stephen who died 9th May 2002 age 27 years. Next year Iwill have another and hopefully raise more money" Myra Gregory.

In memory of Stephen Michael Gregory

A gig was arranged by Wagdog Limited for Dom and raised £401.23. "Charity Football Match vs AstonVilla Old Stars - 8 August 2004. On behalf of the Friends of Dominic Lilley, I enclose a cheque for£1706 which represents half of the proceeds from the above event, the other half going to City

Hospital, Birmingham" Andrew Russell.

Friends of Dominic Lilley

Members and Friends of the Mid-Kent Golf Club held a charity day on 23rd October 2004. They raised a total of£1,600

In memory of Nathan Jennings

Donations were received totalling £275.40 from Mr and Mrs Tomlinson and Ros.In memory of Dawn and Nadia

Mrs. Liz Ingleston has kindly donation £330. "This money was raised to celebrate my son's 21st birthday (Michael JohnIngleston). Due to Michael's medical condition it is very appropriate for CRY to receive this money. The charityevening was organised by Mr. George Gillen and myself. It involved a group of twenty or so friends, supper music quizat my home." Liz Ingleston. Mr.George Gillan's employer Diageo foundation have matched the donation with £330.

Friends of Michael John Ingleston



Cartridges4charity.co.ukThe sale of used cartridges by Cartidges4charity.co.uk has raised £1111.76.

From our friends at Cameron Walker Court "One of our resident ladies, Mrs. Joan Newton celebrated her 80th birthdayrecently and requested that instead of presents her friends made donations to CRY." Derek ThorpMrs. Newton raised £110."Donations were given as 90th birthday gifts from Mrs. Jean Gibson and from the sale of books from our bookstall."Derek Thorp. £225 was raised

Dermot Crean has made a Gift Aid donation to CRY of £200 for his update subscription.

Mr & Mrs D Allen have made a donation of £100 for their update subscription.

Mr. & Mrs. D Rees recently celebrated their Golden Wedding Anniversary, instead of presents they asked that donations be made. A total of £300 was raised, this was shared between CRY and Cancer Research..

Wrexham Round Table have made a donation. The cheque was presented to CRY Patron Mark Cox .With special thanks to Peter Byrne and Mike Walker. The Rotary Cub raised £1000

Bromley Ecumenical Singers held a concert for CRY on 27th November at BromleyParish Church. The programme consisted of Durufle’s Requiem, Vaughan Williams Violin Concertoand John Ireland’s Greater Love Hath No Man. The event was attended by CRY Manager Steve Coxand his partner Lada. The event was greatly enjoyed by all. The singers raised £1012.07

The Medics Revue Company put on a fantastic show for CRY. With all their hard work they managed to raise £2000

plus £125 Matched

Giving from John and

Victoria Phillis.

(Co Producer)

"I had a charity day at my house last week to raise money for both CRY and breast cancer. I am enclosing a chequefor £200 for you." Ms. Jo Cockerill.

"On Saturday 14th August members of Marlborough Town Football Club held a jumble sale to raise money for CRYand Macmillan Nurses. Please find enclosed a cheque for £130 representing the half share from the proceeds."Mrs. C. Grove.

"Please accept the enclosed cheque of £100 as a donation to CRY from the proceeds of Tockholes Village Gala 200."Mrs. V H Houghton.

Wrexham Round Table

Cameron Walker Court

Marlborough Town Football Club

Tockholes Village Gala 200

A charity disco was held at the Woodside Social Club in Glasgow. Fiona McGregor and her friend organised the eventand raised £400."This is the second event we have held now, for which the proceeds are split between CRY and Sargent Cancer Care

for Children, and we hope to make it an annual event.The disco was a great success and we held a raffle and a "Spot the Ball" competition, which proved to be very popular.Around 120 or so people attended the night and a great time was had by all." Fiona McGregor.

Mrs. Betty Carter and Mrs. Cheryl Arnold of Wells in Somerset have raised £280 through a car boot sale held atCheddar and through family donations.



Soroptimist International of Epsom and District held a Floral Extravaganza on May 12th and one of their membersdonated some sponsored walk money; in all £1452 was raised. "It is great to know so many good hearted souls thatmake this kind of an event so worthwhile" Barbara Watts (President). The event was attended by MP Chris Grayling.

Mark Avern and three friends from The Club At Meyrick Park, Bournemouth organised a 'Marathon Row' (Pictured here after theevent). They all put their backs into it and donated £890. They also raised awareness with CRY Merchandise.

Marathon Rowers

"Please find enclosed cheques totalling £120 that have been raised by my lovely grandmother. Her name is Mrs Lily Ford and she recently celebrated her 95th birthday. She decided that at her age she did not need any presents as she has everything she wants or needs, so she asked for donations to CRY instead. Could you send hera certificate or something please as it will make her day." Mrs L J Ford.

Staff at British Home Storeshave held numerous and varied fund raising eventsthroughout the course of theyear and have made a donation of £7599.73. Oneevent pictured left showssome of the runners whotook part in the Great SouthRun.

Soroptimist International of Epsom and District

British Home Stores

"At the request of our Worshipful Master W. Bro. Edwin Herrnicht, I have again been asked to forward ourcheque, this time for £300, which has been raised by the Lodge members during his year of office”.Anthony Odling.

A further donation of £330.30 has been received from the Pilgrims Way Lodge. Richard Searles - Charity Steward. The donations from the Lodge will be used to fund screening equipment at the CRY Centre for Sports Cardiology.

The Pilgrims Way Lodge



Walton-on-the-Naze Rowing Club have donated a further £150 in support of CRY.

"I am a member of Wix & District Young Farmers Club. This year, the Chairman, Will King, has chosen to donate £750to CRY. Please find the cheque enclosed. We all hope this will help." Lisa King.

"The Post Office Recreational Club in Chesterfield held a charity fun day on Sunday 18th July2004 and raised £570 for CRY." Kish Brown - for the Recreational Club.

The Ulster Branch of the Irish Rugby Football Union have made a donation of £711.29.

"Please find enclosed a cheque for £750. This was presented to myself and some other employees from Royal Mail -Slough and GlaxoSmithKline - Slough. My group organised and participated in setting up a drinks station for theWindsor Half Marathon. This year we gave out 12,000 cups of water . We would like to donate this money to CRY tohelp with CRY's campaign." Mr. Thomas Graham.

Irish Rugby Football Union

Walton-on-the-Naze Rowing Club

Wix & District Young Farmers Club

Royal Mail and GlaxoSmithKline - Slough

The Post Office Recreational Club in Chesterfield

Members of the Inner Wheel Club of Cardiff Celtic selected CRY as one of their chosen charities for 2004 and havekindly donated £100. Mrs. Heather Hill - Treasurer.

A donation has been received from the Stithians Women's Institute, Cornwall for £339.80. This is the proceedsof their collections during 2004 for CRY.

"I have pleasure in enclosing cheques to the value of £235.40 raised at our recent Communion services and specialGift Days at Christmas." Betty Malandrone - Ewell United Reformed Church.

"We did not send out traditional Christmas cards from the company this year, just an electronic seasonalgreeting confirming that money saved on Christmas cards will be sent to a charity chosen by the staff.CRY was this year's chosen charity. Please find enclosed a cheque for £350." Sally Daly,Accounts Administrator, West Energy Coast Limited.

“The annual cricket match to raise funds for CRY was thwarted this year by ground improvements being carried out. Inan attempt to salvage part of the fundraising event, Lindsay Clarke in Barclays Bank Resourcing and Learning from theHR Department 'saved the day' by organising a silent auction at their December conference. The amount raised was afantastic £1616.00 and Barclays made a further donation of £750 through their matched funding scheme. We are hope-ful to return to the cricket format this year Sunday 21st August" Neville Pritchard.

“I write as Chairman of Kirkbymoorside Young Farmers' Club. Each year we choose two charities to support. I ampleased to enclose a cheque for £291.55 from the club. We raised this money with a duck race and a carol singingevening. I trust you will be able to put this to good use" Stephen Eddon.

Ewell United Reformed Church

West Energy Coast Limited

Barclays Bank Annual Cricket Match

Kirkbymoorside Young Farmers' Club

Inner Wheel Club of Cardiff Celtic

Stithians Women's Institute

"Please find enclosed £125 which I raised at my Horse Show. We shared the profit with our local scout group." Lisa King

Mrs. Betty Carter and Mrs. Cheryl Arnold of Wells in Somerset have raised £280 through a car boot sale held atCheddar and through family donations.

Mat Ireland from Woodbridge, Suffolk, took part in a sponsored bike ride and raised £172 for CRY.



Mr. Scott Wright of Sunderland Health & Racquet Club held a Swimathon and raised £326 for CRY.

Michael Jones from Balham has again raised money for CRY; this year he has donated £600 by taking part in variouscharity walks. He is planning another walk for later this year and hopes to be able to raise more money.

Mitsubishi Electric, Air Conditioning Systems Europe Ltd. have made a donation of £100.

"I was admitted to St John's Hospital in Livingston on the 12th December after collapsing during a football game. Thecause of this collapse turned out to be Wolfe Parkinson White, which I had been living with all my life. I never knew Ihad WPW, so the cardiac arrest and coma that followed came as much of a surprise to me as my family. The hospitalstaff were especially surprised that I survived. Since my full recovery I have had a fundraiser as a way of saying thanksto the hospital staff and ambulance service who came to my rescue. As a result I would like to make a donation of£350 to your foundation as well. I hope this can in some way help you to continue helping others." Yours with gratitude Scott Fleming

"We had a successful Village Bridge Drive on Sunday and raised from that event £356.50. There is also a chequeenclosed for £100 from the Soroptimist International of Grange-over-Sands, making a total of £456. We enjoyeddoing this event for you and every success to you for the future." Mildred Vause.

"I have enclosed a cheque for you that we raised at a football match on 3rd April 2005 at the Oval in Eastbourne. Itwas a great day, the sun shone, and the match went well. The first half saw the Eastbourne United veterans get somegood chances on goal, but with a great keeper like Robbie we kept them out. The second half found the Ambulance 11stepping up a gear and scoring two goals both from Ollie. What a great day and for a great cause. I think this maybecome an annual event." Mr. W.J. Pike (Bill) EASTBOURNE AMBULANCE 11. The total amount raised was £330.14

Village Bridge Drive

Sunderland Health & Racquet Club

Eastbourne Ambulance 11

Mitsubishi Electric, Air Conditioning Systems Europe Ltd

"Please find enclosed a cheque for £281.60. This is money raised by Derek Coleand Angela Frost who were part of my Commando Challenge Team. There aresome outstanding amounts which I will forward to you as soon as I receive them.They all want to run again next time, so hopefully we'll do even better then." Julie John. Julie has added an extra £82.

CRY Commando Challenge

A Royal Marine offers a helpinghand to Julie and her team.

"I have pleasure in enclosing a cheque for £2,000 representing a donation made by Carr Sheppards Crosthwaite underthe corporate Gift Aid scheme. Your charity was nominated by one of our clients, Ann Meek, following a draw whichtook place at our offices recently. We felt it was a very good way of making a charitable contribution at this time ofyear." Mark Radmayne.

Carr Sheppards Crosthwaite

The Three Valleys Water Company at Hatfield, held a ‘Dress Down Day' for CRY. “Each month we have a Dress Down Day when staff either come towork casually dressed or dress-up to a particular theme, at the same timethey donate money to charities nominated by staff. The money raised is thenmatched by the company”. Sally Howe.

Three Valleys Water Company

Sally Howe from Three Valleys Water hands over a cheque for £470 received on behalfof CRY by John Dickinson, English Institute of Sport, Physiologist. Based at the OMI




"On 5th July 2003, we organised a charity night in memory of Patrick "Paddy" Burns who one year previously (July 6th 2002), tragi-cally died in his sleep, aged 34. Pathologist tests could find no abnormalities and the post mortem eventually concluded the causeof death as "unascertained." We contacted CRY before the charity night, obviously to obtain "approval" and immediately afterwards you supplied a brief coveringletter to acknowledge our fundraising efforts, but more importantly, to offer your full support and best wishes. The charity night was held at our local pub, the Horse and Jockey, Unstone, Sheffield. It was an extremely busy night as "Paddy"was a very popular man with many friends and acquaintances. Although he wasn't married and didn't have children of his own (7 nieces and nephews - whom he adored), family was very impor-tant to Paddy. Anyone who knew Paddy was aware that he could light up a room with his huge presence and booming laughter. We contacted many local and national companies looking for donations, gifts, vouchers, etc. for the "auction/raffle" we were holdingon the night. The response was absolutely overwhelming with many, if not all, willing to offer support through providing many excel-lent raffle prizes. The local paper (Derbyshire Times) were extremely supportive and also covered the event. Many thanks go to Colin and Lisa from the Horse and Jockey and especially to Somerfield for generously supplying many raffleprizes and also for tirelessly collecting money in several stores in and around the area. Also thanks to family and friends who gathered on the night to ensure everything went well and to pay their respects to Paddy. Atone point we had an unplanned sponsored "head shave" from one of Paddy's friends, which alone raised over £100. On the night we raised a total of £1,068.00.

Following on from the charity night, Paddy's friends and family have also held several further fund raising events in a bid to raise asmuch money as possible for CRY and also to keep the memory of Paddy alive. A list of the events and money raised is as follows:

· Charity Night (Horse and Jockey pub) 5th July 2003 £1,068.00· Somerfield - Dronfield Store (donating widescreen TV) £ 516.50· Sponsored 10k walk £ 90.00· Car boot sale £ 80.00· Friends’ donations £ 100.00· Pool tournament £ 27.00· Somerfield raffle (several prizes donated) £ 110.00All the money raised is to be donated to CRY, therefore I enclose a cheque for £1,991.50.

We will never be able to get over losing Paddy and feel like we could write a whole book on his life as he always had so many sto-ries to tell. We feel we could all live to see 100 and never truly love and laugh as Paddy did".Tammy Butler (Paddy's sister)

Steph and Rubert Hunter opened Sebastian's fund with a £100 donation. They enclosed a 'flyer' with theirChristmas cards in the hope that there would be a small response. They have been overwhelmed by theresponse. To date Sebastian's memorial fund stands at over £40,000.

"I enclose a cheque for £250. I was a school friend of Seb's and therefore when I was given the opportunityto raise money for charity, to do it in memory of Seb was an immediate choice. Over the Easter weekend, Itook part in the Devizes to Westminster Canoe race, which runs from Devizes to Reading along the Kennetand Avon Canal then from Reading to Westminster along the Thames. The race takes four days for juniorsand we camped along the route in Newbury, Marlow and Teddington. We finished the race 18th out of 57 with atime of 21hrs and 20 minutes." Jon Peatman.

"I am Sebastian English's cousin Catherine Lane and I recently celebrated my 18th birthday. Instead of having presents I collecteddonations for CRY - Sebastian English Memorial Fund. I therefore enclose a total of £235." Catherine Lane

Haslemere Rugby Football Club held a charity match on the 27th February 2005 and raised £488 for CRY.

"Some of my old mates from Yorkshire and Northumberland got together for a very enjoyable Golf Day on Election Day for the firstSebastian English Memorial Golf Day - It will be an annual event with the losers organising next year's day! Richard Heslop wasthe main organiser " Rupert Hunter. The total raised on the day was £3250"

Mr. Gary Dudman arranged a golf day on Wednesday 20th April for friends, colleagues and business contacts, 76 players turnedup on a glorious day at Hankley Common Golf Course, near Farnham and as a result of this, I have pleasure in enclosing a chequefor £3,300" Rupert Hunter.

Juliet MacColl organised a charity cinema night at Alton Cinema and raised £568 for CRY. The money raised was split betweentwo charities - CRY and children's Liver Disease Foundation.

In memory of Sebastian English

In memory of Patrick ‘Paddy’ Burns


In memory of Sebastian English

Issue 39

CRY CRY

Sebastian was like any other 15 year old you may know. He was bright, witty, sporty, smiley and so verypopular and happy. On Sunday 15th February 2004, whilst playing rugby for Haslemere againstCamberley, Sebastian collapsed and died as he was retrieving a ball that had rolled out of play. Justover ten years earlier, his father Howard English, died aged 32 in almost identical circumstances atEsher RFC.

Howard was diagnosed of having died of a heart condition called floppy mitral valve disease. Hiswife, Stephanie, was assured that this condition was not hereditary and that Howard's death was atragic one off. This proved to be a tragic misdiagnosis. After a thorough autopsy, the cause ofSebastian's death was established as ARVC (Arrhythmogenic Right Ventricular Cardiomyopathy) agenetic heart condition that can lead to sudden death. Reality hit. It was now clear Howard had died ofARVC and that Sebastian could have been saved.

Sebastian had two direct siblings, Sabrina and Titus. They had a (50/50) chance of developing ARVC and despite screeningevery three - six months; it was unlikely that a definitive answer as to whether or not they had inherited ARVC would bepossible until the mutant ARVC gene had been found in the family. This could take at least five - ten years. Thanks to theremarkable work of Dr Perry Elliott, his team at The Heart Hospital in London, and many others committed to finding geneticillness, the mutant gene, plakophilin 2, was found in the family. Gloriously, Sabrina and Titus have not inherited this geneand can now look forward to leading fulsome lives.

Stephanie married Rupert, a long-term friend of Howard's, when Sebastian was six. Immediately, he announced that Rupertwas Daddy and that was that. Happy years followed and when his new brothers, Marcus and Rory were born, he welcomedthem enthusiastically. Sebastian was the talisman of the family.

There have been many different events organised by many people since Sebastian's death. From a wonderful day of eventsat Haslemere Rugby Club to friends and Masters at Sebastian's school, Lord Wandsworth College, who have just cycled330 miles from Anglesey back to the school in Hampshire in six days. From golf days in Surrey and Yorkshire to sponsoredcanoeing. From a Cinema evening in Alton to schools adopting CRY as their chosen charity, and selling hundreds of wrist-bands. From a very special Poker evening in London to so many friends who responded to a Christmas card flyer...andthere are many more events planned.

It is the passion and drive of the family to continue to raise awareness, and reaction from an article in the Daily Telegraphand an interview on Radio 4's Home Truths in May has been extremely positive.

Sebastian made a lasting impression on all who met him. He was so genuine and completely lovely. It is therefore no sur-prise that so many have wanted to raise money for CRY in his memory, as well as raising awareness of genetic cardiacillness that can lead to sudden death in young, often sporty, people. Rupert Hunter

Allen & Overy LLPMrs. Diana AnscombeMs. C. Ayrton-GrimeMr. P BergquistMs Jane BillinghurstMr. Chris BirdBrian & Jo BirdMrs. R.M.M. BostonAnn & William BoyleMrs. Jean BridgfordMrs. E.P. BrownMs. Beth ChampionMs. Jill ColvinN.J. ColvinN Corlett (Essential Cuisine)Mr. Mark DaviesMs. J Davies-EvittMike & Lucy DicksonMs. Elspeth DixonMrs.K. DobsonMr.J.A. DouglasMrs. Nicola EarlamDarren & Sue EllisMs Ann EstridgeMrs. V Evans

Sandy Elizabeth FurgusonMiss Nicky GoudgeMrs. Catherine GrantMrs. Mary-Lou GravestockSir Ronald HampelMr. Joh HarveyMrs. Liz HinsonMr. & Mrs. A HoldsworthMr. & Mrs .W. HoldsworthMs Jenny HolgateR.T. Hull LewisMr. W. KesslerMr. & Mrs. P. MacCollMr. Christoper MacCollMr. & Mrs. A MarchantJ.C. MarshallMs. Sara MitchellMiss J.S. MontefioreMr. Nick MossMr. Alexander JamesMyddeltonMr. R.T. MyddeltonA.D. & H.M.NewlandMr. A. NewtonMr. Steve Nicholson

Mr. & Mrs. G.W. OwensPali InternationalMr. & Mrs S.G.ParrottC.H. & S.J PeacockMr. Richard PeirsonMrs. Patricia PooleMr. Martin Pope Portsmouth Grammer SchoolPramerica Real Estate InvestorsLimitedMrs. C.M. PriceMr. G. Rees Mr Phil RichardsonMr. J.J.M. RidleyMr. Alan Robinson(at the Corbridge Cookshop)Dr. & Mrs. Colin RuckMrs. Jane RushtonMs Georgina RyottMiss Joyce SawerbyMs P. ShawMr. & Mrs. ShawMr. Nigel SherlockMr. M.J. ShoesmithMrs. D.A. Short

We would like to thank those that have made a donation to CRY in memory of SebastianMr. A.V. SilvertonMr. Peter SmithMr. & Mrs T. SpencerMr. Peter StaffordAndrew & Amanda StothertMr. Andrew SutcliffeMr. & Mrs. M TabardThe Lee Bakirgian Family TrustThe NeishsThe Peter Kershaw TrustThe Wren Charitable TrustMr. Nigel ThomasMs Nicola ThompsonMr. & Mrs M ThompsonMrs. G.E.P. ThornhillMr. David TullyMr. Andrew TwelvesMr. Philip UptonMr. & Mrs. M.N. WaterhouseMrs. P WeardenEmyr & Carol WilliamsMrs. June WoodMrs. A Worrall


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Daily Telegraph 02.05.05

The Daily Telegraph


Raising AwarenessCRY CRY

Printed with Permission of Best Magazine 09.11.04

Issue 39

BEST MAGAZINE


Raising AwarenessCRY

Printed with Permission of The News, Portsmouth 17.09.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission The Democrat, Newry 26.10.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of North Staffordshire Evening Sentinel 31.08.04

Raising AwarenessCRY CRY

46 | Cardiac Risk in the Young Issue 39

Printed with Permission of The News, Portsmouth 17.11.04 - Clacton Gazette 27.08.04


Raising AwarenessCRY’s Private Members Bill

Issue 39

CRY CRY

Printed with Permission of The South Wales Evening Post 12.03.04 & 13.03.04 - North Wales Chronicle 24.12.03- Express & Echo, Exeter 13.03.04


Raising AwarenessCRY’s Postcard Campaign

Issue 39

CRY CRY

Printed with Permission of The Gazette, Blackpool 27.11.04



Issue 39

CRY CRY

Printed with Permission of The Express & Echo 27.08.04



Issue 39

CRY CRY

Printed with Permission of The Frome Times 16.09.04 - Dumfries & Galloway Standard 04.08.04- Herne Bay Times 12.08.04 - Penarth Times 27.01.05



Issue 39

CRY CRY

Printed with Permission of The Thanet Extra 06.08.04 - Frome & Somerset Standard 09.09.04- Flintshire Evening Leader 25.01.05



Issue 39

CRY CRY

Printed with permission of The Tameside Reporter 09.12.04 - Lancashire Evening Telegraph 24.11.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Tameside Peporter 23.12.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Glenrothes Gazette 03.11.04


Raising AwarenessCRY Mobile Family Screenings

Issue 39

CRY CRY

Printed with Permission of The Evening Gazette, Middlesbrough 08.09.04 - 31.01.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Oxford Mail 02.11.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Evening Chronicle, Teeside

year


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The North Staffordshire Evening Sentinel 02.09.04 - Frinton & Walton Gazette 31.12.04Colchester Evening Gazette 23.01.04 - East Anglian Daily Times 06.01.05


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Birmingham Evening Mail 10.08.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Hertfordshire Mercury 03.09.04 - Hoddesdon & Broxbourne Mercury 03.09.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Sunderland Echo, City 24.08.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Western Gazette 26.02.04 - Somerset Standard 29.07.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Brighouse Echo 03.09.04 - Watford Observer 10.09.04- Herald Express, Hemel Hampstead 23.09.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Warminster Journal 14.01.05 - The Rugby Observer 13.01.05


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Oxford Mail 20.12.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Kentish Express 02.12.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Evening Chronicle, Newcastle 27.08.04 - News Letter 19.08.04 -County Down Spectator and Ulster Standard 19.08.04


Raising Awareness

Issue 39

CRY CRY

Printed with Permission of The Deeside Chronicle 31.12.04 - County Down Spectator & Ulster Standard 16.09.04 -Southern Daily Echo 24.09.04 - Brighton & Hove Leader 06.08.04 - Oldham Evening Chronicle 01.09.04


Bulletin Board

Issue 39

CRY CRY

If you would like CRY toconsider any item forBulletin Board please

email or fax details(including your item)

through to Steve on fax:01737 363444

Please bear in mind when organising fundraisings that itwould be brilliant if you couldtake photos of your great day.It is also essential that whenyou write in to the office, thatyou clearly state how much

was raised, by whom and if it’sfor a specific memorial fund.

Please give me a call oremail me if you have anysuggestions on how youwould like the content ofyour future fundraisingpages to be laid out in thefuture.

Best wishesSteve Cox

C h r i s t m a sC a r d sWe wwill ssoon bbe llooking ffor hhelp iin ddistributing oour CChristmas CCards

and CChristmas CCard lleaflet.

If vvolunteers ccould aapproach llocal bbusiness tto ssee iif tthey ccan aadopt CCRY.

We aare aalso llooking ffor aa ffew vvolunteers tto ggive uup hhalf dday aa wweek ffrom SSeptember - DDecember ttowork iin ttheir llocal ‘‘Cards 44 GGood CCauses’ sshop iin 22006.

B L A Z EBlaze is an organisation best known for their Firewalking Experience. If you are interested in something com-pletely different- like learning how to walk barefoot across broken glass, experience being a fall guy or body-guard or ‘simply’? surviving the call of the wild for 5 days and nights - you may finally have found the place tobe. For more information on these events go to their website www.blazefirewalking.com or contact the CRYoffice. There are a number of different events on offer to those who are wishing to fundraise for CRY.

RING FENCED FUNDRAISING

Please remember that unless you notify us and get the necessary documentation and confirmation from the office for“ring fenced” fundraising before you start a fundraising venture, all funds raised will be used for CRY Core Funding.

Retrospective “ring fencing” is unfortunately just not possible. CRY cannot be responsible for any “ring fenced” fundrais-ing unless it has been authorised.

“Ring fenced” fundraising is for specific projects only. After the successful conclusion of the authorised project, fundrais-ing will be directed again to CRY Core Funding.

Because of the appeal of certain projects, some will have a waiting list.

London Marathon23rd April 2006

Every year we have a numberof Golden Bond charity placesavailable for brave soulswilling to tackle this gruellingevent to raise funds for CRY,and we also welcome any 'ownplace' runners who would liketo run for CRY.

Please contact the CRY officefor more details.

Free Fundraising Events

CRY is looking for adventurous people to takepart in a number of free fundraising eventsorganised by professional events companySkyline.

If you fancy leaping out of an aeroplane; cyclingin Vietnam; white water rafting; or trekking in thedesert, then please go to the CRY website tofind out morewww.c-r-y.org.uk/free_fundraising_events.htmor phone the CRY office.

No previous experience is necessary - just acommitment to raise a minimum sponsorshipamount, and the willingness to face a challenge!

I’ll lend you for a little while a child of mine, God said,For you to love while he lives, and to mourn for when he’s dead

It may be six or seven years or forty-two or threeBut will you, till I call him back, take care of him for me ?

He’ll bring his charms to gladden you, and should his stay be brief,You’ll always have his memories as a solace in your grief.I cannot promise he will stay, since all from earth return,

Bur there are lessons down below, I want this child to learn.I’ve looked this whole world over in my search for teachers true,

And from the folk that crowd life’s lane, I have chosen you.Now will you give him all your love and not think the labour vain

Nor hate me when I come to take this lent child back again ?I fancy that I heard them say” Dear God, Thy will be done,

For all the joys this child will bring the risk of grief we’ll run.We will shelter him with tenderness, we’ll love him while we may,

And for all the happiness we’ve ever known, we’ll ever grateful stay,But should the angels call him much sooner than we’d planned,

We will brave the bitter grief that comes, and try to understand”.

This beautiful poem was handed to Tony and Evelyn Sayer as they entered the church for the funeral of their son, Kevin, on 4 April 1995.

Eighteen year old Kevin died on the night we left Norwich after our first player/public screening.We hope it’s words comfort you and bring you peace.

God’s Lent Child

CRY Update Magazine - Issue 39

Documents

Transcript of CRY Update Magazine - Issue 39