1. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk CRY is the only organisation that focuses exclusively on the issue of young sudden cardiac death

2. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk CRY is the only organisation that focuses exclusively on the issue of young sudden cardiac death Through CRY’s work since it was founded in 1995 we are finally starting to understand the magnitude of the problem The number of apparently fit and healthy young people believed to be dying every week in the UK of undiagnosed heart conditions 1995 Only 1 a week Anecdotal evidence 2000 4 to 8 a week Anecdotal evidence 2004 At least 8 every week Anecdotal evidence 2008 At least 12 every week published data (ONS*) The Statistics on Young Sudden Cardiac Death

3. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Young Sudden Death in sport Marc-Vivien Foé (1 May 1975 – 26 June 2003) Fabrice Muamba (17 March 2012)

4. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Claire Squires (London Marathon 2012) Young Sudden Death most deaths are not in elite athletes

5. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Young Sudden Death not just elite athletes Your story

6. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk CRY aims to reduce the incidence and impact of young sudden cardiac death by:RaisingAwareness Support & Counselling Support & Counselling Cardiac Cardiac Screening ScreeningResearch CRY Aims to Reduce the Incidence and Impact Saving young people before a tragedy occurs Supporting people after a tragedy occurs Saving young people before a tragedy occurs Supporting people after a tragedy occurs

7. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Sir Ian Botham OBE, Honorary President of CRY “We must stop these terrible tragedies. Youngsters are dying needlessly – we can and must change things.” "At the end of the day these deaths are indiscriminate. They affect all sorts of people - amateur sportsmen, professional sportsmen, a guy playing on a pitch, a kid at a school sports day. It is something that must be addressed and has been swept under the carpet for too long." Raising Awareness with CRY Patrons

8. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Raising Awareness with CRY Patrons Sir Steven Redgrave CBE Sir Steven Redgrave CBE "I am pleased to be a patron of CRY having had first hand experience of the impact of such a death. Robert Hayley was my best friend and crewmate. He was extremely fit and we had just recently as juniors won a senior race together. We had been watching TV. He suddenly stood up and died of what we were told was a cardiac abnormality. He was 17. That memory is always with me. Supporting CRY's work is something I am delighted to be part of."

9. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk John Inverdale "Howard English was a friend who was an amazing guy and an outstanding rugby player. The ultimate Bon Viveur. It was a truly shocking moment when he died suddenly during one of our rugby games. When someone dies in your arms like that on the side of a rugby pitch it is not something you ever forget. It was tragic beyond belief when Howard's death was compounded by the death a decade later of his son Sebastian, whilst playing rugby just like his Dad. No-one knew that the condition that had killed Howard could be genetic. CRY's screening programme is fantastic and it is good news that they are now going to be screening our young rugby players. In Italy they have compulsory testing of athletes and it seems so patently obvious that we ought to be doing this too. As a Patron of CRY I want to do all I can to help promote their programme.” Raising Awareness with CRY Patrons

10. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk CRY Heart Costumes at the London Marathon Raising Awareness with the General Public, Medical and Sporting Communities Through raising awareness young lives are saved 1.Family history of young sudden death 2.Symptoms that increase risk 3. Those at risk who have no symptoms

11. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Raising Awareness Saves young lives when there is a family history Family history of young sudden death After a young sudden death the family members need to know; where to go for emotional support o Talk to CRY Founder and CEO o Support o Bereavement o Diagnosed / myheart the cause of death o Unascertained/natural death! o Expert pathology if others are at risk o Genetic conditions o Expert cardiology referral CRY supporter Laura John (2004) tossing the coin at Wimbledon Men’s Singles Final

12. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk 19 volunteers with experience of a similar tragedy undertaken CRY's accredited counselling training to help others adjust. Bereavement Supporters complete a two year BAC accredited Counselling Skills and Theory course. Following a young sudden cardiac, death families often seek emotional support and further information. Individual Support - CRY’s Bereavement Support Network SupportforFamiliesthrough CRY’sBereavementSupport Programme Support for Families through CRY’s Bereavement Support Programme www.c-r-y.org.uk/living_with_loss.htm Group Support - CRY’s Bereavement Support Days Regional bereavement support days Scotland, Northern Ireland, North, South National bereavement support days in Birmingham specifically for siblings, partners, mothers and fathers.

13. What is myheart? for young people (age 12 and 35) diagnosed with a cardiac condition Meetings meet with other young people with similar conditions talk about your experiences in a supportive environment ask a specialist questions in an informal setting Help from myheart members contact others with similar conditions. Newsletter and website regular newsletters www.myheart.org website All of the support services CRY offers are free CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk SupportforThoseAffectedthrough CRY’smyheartNetwork Support for Those Affected through CRY’s myheart Network

14. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk The CRY Centre for Cardiac Pathology (CRY CCP) Established in 2008 Unexplained sudden death often recorded as 'natural causes'. Most tragedies due to sudden cardiac death. Fast-track expert cardiac pathology service Cause of death identified in 2 weeks, Prior to this service they could wait up to 24 months. Service lead by world expert Dr Mary Sheppard Until the cause of death is determined it is often not possible to test other family members who may be at risk from the same cardiac abnormality. The CRY centre is Fully funded by CRY and now based at St George’s Hospital to work alongside the CRY Centre for inherited cardiac conditions The importance of correct pathology cannot be overstated as it gives families the opportunity to obtain valid answers to the cause of death and to quantify the risk posed to other family members.

15. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Professor Sanjay Sharma heads up a team of specialist doctors based at St. George's Hospital, London. Services for: affected families, competitive athletes and the general population CRY funds the machinery, 6 doctors / research fellows, a physiologist, and a nurse At these fast-track clinics families will be seen - Within a few weeks of referral, after the sudden death of a young family member - Have all tests on the same day - Be seen together as a family unit The CRY Centre for Sports Cardiology (CRY CSC) provides a specialist service for expert clinical cardiac diagnoses of elite athletes. London Screening clinic at weekends for the general public TheCRYCentrefor Inherited Cardiovascular Conditions and Sports Cardiology The CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology

16. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Supportforfamiliesthrough MedicalInformation Support for families through Medical Information CRY’s YouTube channel: www.youtube.com/user/cryvideos

17. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Raising Awareness Saves young lives when there are symptoms Symptoms that put you at risk family history of YSCD chest pain (exercise related) passing out (syncope) breathlessness palpitations dizziness

18. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk The simple way to diagnose most cardiac abnormalities is a quick, painless and affordable procedure called an electrocardiogram (ECG). CRY’s screening service is available to any person aged between 14 and 35. Raising awareness of the importance of cardiac screening for all young people 80% of young sudden cardiac deaths are asymptomatic 89% reduction in young sudden deaths when screening is implemented 1 in 300 people have potentially life threatening conditions 1 in 100 have less serious cardiac abnormalities In 2013 currently tests over 13,500 young people each year 45 people with potentially life threatening conditions 135 with less serious condition International recommendations that screening should be in place prior to participation in sport, in Italy this has been law since 1982. The majority of young sudden deaths do not occur in elite athletes, they are at grass roots

19. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk CRY tests many of the leading UK athletes, including; GB Rowing, GB Cycling, GB Swimming, GB Diving, GB Boxing, UK Athletics, Premiership Football Teams (e.g. Manchester City, Tottenham), England Cricket, The Lawn Tennis Association, SKY Cycling. CRY tests all Aviva Premiership Rugby players, England representative and Regional Academy players above the age of 16 Philips have provided CRY: 2 CX50 Portable ECHO machines, 1 Ie33 3D echo machine & 4 ECG machines; plus funding to test all elite GB athletes leading up to the 2012 Olympics. The European Society of Cardiology (ESC) and International Olympic Committee (IOC) recommend cardiac screening for any young person participating in competitive sport. In countries such as Italy, screening for those participating in representative sport is mandatory. This is also the case in some professional sports (UEFA, FIFA, UCI) For some professions (e.g. pilots) cardiac testing is also mandatory. Cardiac Screening for Elite Athletes in the UK Sport itself does not lead to cardiac arrest but can trigger a young sudden death by aggravating an undetected abnormality.

20. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk CRY’s Cardiology Research Team is Leading the Way CRY's screening programme not only identifies people at risk, but also provides data for vital research into the prevalence and management of cardiac abnormalities. The findings are published in reputable, peer-reviewed journals and our guidelines are internationally recognised. CRY was the first organisation to: identify the upper limits of wall thickness and cavity size in British athletes; characterise cardiac dimensions in adolescent athletes – knowing how to differentiate pathology (disease) from physiology (normal because of exercise) is vital for diagnosis; characterise ECG changes in athletes in a document that is now the blueprint for the European Society of Sport Cardiology; look at cardiac adaptation for Caribbean athletes, as they differ from Caucasian athletes in the way they adapt to exercise. CRY has also been pivotal in identifying the prevalence of conditions such as hypertrophic cardiomyopathy (HCM) in athletes. www.c-r-y.org.uk/research.htm

21. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Maximising the impact by linking with families within the community Maximising awareness and fundraising through PR and social media CRY’s success has been driven by local communities Local communities support CRY families Facebook Through Facebook, CRY is reaching those most likely to benefit from our services. Twitter Through Twitter we can see the impact of CRY’s messages being maximised, as supporters re-tweet /CardiacRiskintheYoung @CRY_UK /cryvideos

22. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk When a young person dies suddenly many people suffer; the effect is not isolated to the person who died It affects: their family, friends, peer group, and local community 600 fit and healthy young people die every year in the UK due to Young Sudden Cardiac Death Thousands of people every year suffer the tragedy of losing a person they loved dearly When a young person dies suddenly many people suffer; the effect is not isolated to the person who died It affects: their family, friends, peer group, and local community 600 fit and healthy young people die every year in the UK due to Young Sudden Cardiac Death Thousands of people every year suffer the tragedy of losing a person they loved dearly Theimpactofasuddendeathis notanisolatedevent The impact of a sudden death is not an isolated event

23. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Thank you for your support CRY is an independent charity that only survives thanks to the ongoing efforts of its supporters. Many (though not all) CRY supporters have suffered a bereavement, and are working to stop other families having to endure a similar tragedy. Thank you for your support CRY is an independent charity that only survives thanks to the ongoing efforts of its supporters. Many (though not all) CRY supporters have suffered a bereavement, and are working to stop other families having to endure a similar tragedy.

24. CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: cry@c-r-y.org.ukwww.c-r-y.org.ukwww.sads.org.ukcry@c-r-y.org.uk Tel: 01737 363 222 Fax: 01737 363 444 cry@c-r-y.org.uk www.c-r-y.org.uk