As Deputy Editor of the CRY Update it is my responsibility to put together this newsletter, and ambition that you find all the CRY news, events and fundraising in these pages to be of interest.
I always endeavour to ensure the information printed in this newsletter is accurate, but please do not hesitate to get in touch with me if you notice something amiss. CRY receives an incredible amount of support and I know occasionally an error will slip through, however any fundraising corrections will be clearly demarcated at the beginning of the subsequent issue’s fundraising section.
I would appreciate hearing from you at tom@c-r-y.org.uk or on 01737 363222 if you have any feedback or comments regarding previous issues. Thank you for your help.
Alison Cox MBE Founder
Professor Mary Sheppard Consultant Cardiac Pathologist
Head Office:
Unit 1140B
The Axis Centre Cleeve Road
Leatherhead
KT22 7RD
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 welcomes letters but reserves the right to edit when necessary and to withhold publication. Any opinion or statement by the author of any article or letter published does not necessarily represent the opinion of Cardiac Risk in the Young (CRY). Articles pertaining to health-related topics are for information only. Readers should obtain advice from their own practitioner before attempting to diagnose or administer any medication. Mention of any products or procedure should not be considered an endorsement for said product or procedure.
Submission guidelines: We include activities in the “Our Fundraisers” section that raise £100 or more.
Entries appear in the “Our Fundraisers” section according to when CRY sends official receipt of monies raised.
If you can supply a writeup or photos for any fundraising activities you have taken part in, please email tom@c-r-y.org.uk Images
For more details regarding the events shown on the cover, please turn to the corresponding page references below. Images are listed clockwise from top left:
1. CRY supporters taking part in the Borneo Half Marathon in memory of Tom Arthur. Page 22.
2. Supporters taking part in the 2020 CRY Great Cake Bake in memory of Tom Clabburn. Page 15.
3. CRY Ambassador Ben Coleman taking part in the 12 A Week Challenge. Page 14.
4. CRY supporters taking part in the 2020 Virtual London Marathon. Page 16.
5. CRY supporters taking part in the 2020 Virtual London Marathon. Page 16.
6. CRY supporters taking part in the 12 A Week Challenge. Page 14.
7. CRY supporters taking part in the 2020 Virtual London Marathon. Page 16.
8. CRY supporters taking part in the 12 A Week Challenge. Page 14.
9. One of CRY’s supporters taking part in the 12 A Week Challenge. Page 14.
10. Two young CRY supporters taking part in the 2020 CRY Great Cake Bake. Page 15.
11. A young CRY supporter taking part in the 12 A Week Challenge. Page 14.
12. One of CRY’s supporters taking part in the 12 A Week Challenge. Page 14.
13. CRY supporters taking part in the 2020 Virtual London Marathon. Page 16.
Aaron James Dixon (left) was born on the 23rd September 1987. Aaron was a much longed for child and I loved him beyond words the moment I first saw him. Aaron was such a beautiful, happy and contented baby. He grew into a very handsome, cheeky, fun-loving boy. Aaron was loved by everyone he met and he always had a smile on his face. That love showed on the day of his funeral, where over 450 people attended. Aaron was very active and growing up he was on the school football team, he took part in cricket, taekwondo, tennis, rollerblading and loved skiing.
My life changed on the 4th September 2011 – my precious, handsome, loving son was gone forever. I cannot forget my husband Gary’s screams the moment he found Aaron in his bedroom. I remember running up the stairs and into Aaron’s bedroom, grabbing the phone and dialling 999. I remember speaking to someone but I couldn’t remember our address and then the phone being taken from me by our friend and neighbour, Becky Knight. I remember being sat on my daughter’s bed with Becky’s husband Ian whilst Becky tried to resuscitate Aaron. For that I will always be eternally grateful. I remember the paramedic kneeling down and saying “I’m so sorry.” I remember wanting to slap him and say it wasn’t true. After that I don’t remember much at all.
I really don’t remember very much for a long time afterwards. I went somewhere within myself, a place I know other grieving parents would identify with. Family and friends fed us and looked after us for those first few weeks, I don’t know what we would have done without them. There will always be a special link with certain people after that fateful night, Becky and Ian Knight, Abby-lee Ravenscroft, Scott Ravenscroft, Jamie Dearden, Michael Lee, Jadie Hassell, Michael Seery, Oli Daniels, Ben Dingwall, Billy Lane, Shane Davies, Luke Whaites, Ryan Moroney, Matt Higgins, Woody Al-Zidgali, Joe Chapman, Josh Saville, Scott McNicol, James Barker and Luke May.
Aaron had a large circle of very close friends who have become like family to us. They are all instrumental in the fundraising for Aaron’s Memorial Fund. They are my link to my precious son. Aaron’s friends were and still are a massive support to Gary, Hollie and myself. Along with Gary they helped organise and played a role in Aaron’s funeral. That day will forever be etched in my mind. The day I lay my son to rest, a day no parent should have to go through.
Unbeknown to us Aaron had a heart defect, ARVC, which had gone undetected until that fateful night. As parents
we bring children into this world and our job is to love and protect them. I couldn’t protect Aaron from something I knew nothing about. No parent should have to go through the loss of their child, and I knew that in order to survive the loss of Aaron I had to do something positive and also keep his memory alive. The Aaron James Dixon Memorial Fund was set up, and money raised is used to fund screening days.
My mission then became to help save young people and stop other families going through the heartache we face every day. No parent should have to bury their child. To date, with the help of so many people, we have raised £350,000, holding 35 screening days in Aaron’s memory. One of the young adults referred was Charlotte Carney who, in 2018, received her heart transplant. In 2018, I made the decision to fund the screening of elite athletes with The English Institute of Sport, something which I know Aaron would be proud of as he loved his sport.
Since starting on this fundraising journey I have been fortunate enough to be awarded The Cheshire West & Chester Early Intervention Award, Community Rewards Voluntary Fundraiser of the Year, Points of Light Award for fundraising from Theresa May, The Pride of Britain Fundraiser Award (Granada Region), She Inspire Awards Highly Commended for Volunteer of the Year.
In February 2019, I launched the “CRY for Cumbria” campaign. With my dear friend Elaine steering the fundraising along with Adele and Andrew Richardson, the campaign has raised £17,731 so far. I am hoping that the screening event booked for October this year will go ahead. This weekend of screening will not only be in memory of Aaron, but my dear friend Elaine Nelson, who was instrumental in the fundraising to bring screening to Kendal.
In February 2020, I was lucky enough to be able to launch a candle with a local company Moments Candles in Aaron’s memory to raise funds for screening. The candle launched just in time for Mother’s Day last year and has been a huge success, it is called Aaron’s Love.
Dr Steven Cox CRY Chief Executive
Thank you for everything that you continue to do to support CRY and raise awareness within your local communities. Included in this section are a number of media stories from September to December, as well as information about some of CRY’s events in this period.
September
Charlotte Luckett lost her brother, Martyn, when he was only 19 years old. She has been supporting CRY in his memory, and has done what she can to raise awareness. She recently undertook a massive challenge by completing 12 marathons in 12 months, and talked about her support for CRY in an interview with BBC South West Spotlight. “I’m doing it to represent the 12 people that die a week from sudden cardiac death in the UK,” Charlotte said when talking about her challenge. “The National Screening Committee who advise the NHS, they only think it’s one person a week. So the reason for doing it is to give the 12 a face, and do each run in honour of them.”
It is fantastic for awareness to be raised on platforms like this. I was also able to join the interview to provide more information about CRY’s work, and explain how we have been campaigning to establish a better policy in the UK to enable young people to have access to screening.
October
The London Marathon typically takes place in April,
but due to COVID-19 it was unable to go ahead in 2020. Instead, it was postponed and became a virtual event in October, and we were so pleased to see so many CRY supporters getting out and taking part. 38 runners all around the UK completed a marathon run in their local area, raising vital funds and awareness for CRY. Thank you to all of our runners for their amazing efforts, especially during such a tough time for all of us.
To read a full write-up and see photos from the day, go to page 18.
October
Like our fundraising events, the 2020 CRY Conference went virtual as well, with presentations being broadcast live through the day. However, it was still a terrific day of talks as always. Some of CRY’s former Research Fellows, CRY Consultant Cardiologist Professor Sanjay Sharma, and myheart cardiologist Dr Michael Papadakis spoke about their new research, while other experts from around the world such as Professor Domenico Corrado, Professor Antonio Pelliccia and Professor Mats Börjesson spoke as well.
You can watch all of the presentations from the conference (and find out more about our research from 2020) by reading CRY’s latest Research Highlights here.
November 4
Internationally, CRY is known as a charity which has led the way in funding research into young sudden cardiac death. Professor Sanjay Sharma has been leading
“The importance of CRY’s research” webinar with Professor Sanjay Sharma
a CRY Ambassador. “She helped build my career from nothing and was there during the good times and bad, supporting me through thick and thin. Through everything she never lost faith in me and pushed me to be the best possible version of myself. No amount of songs or tribute concerts can repay what she has done for me, but I’m doing my best to try.”
CRY’s research programme over the past 25 years, helping to publish research that has transformed our understanding of the causes and prevention of young sudden cardiac death (YSCD), and the treatment of those at risk.
To look at some of the developments of CRY’s research and its importance, Professor Sharma hosted a live 15-minute presentation and answered questions from supporters. This covered several key areas, including how CRY’s research has shed light on the incidence of YSCD, the causes of sudden cardiac death, the interpretation of autopsy findings, the evaluation of first degree relatives of victims of sudden cardiac death, identifying the prevalence of serious cardiac diseases in the young population, and refining cost effective methods for identifying and treating young people with cardiac conditions.
We are grateful to have a growing group of Ambassadors who can help spread word of CRY and raise awareness of young sudden cardiac death. Ambassadors have achieved recognition in their chosen field, and work with CRY and deliver key messages to their followers and fans. The latest CRY Ambassador we were proud to announce was international singer and songwriter, Arjun. In 2018, Arjun lost his wife, Natasha, when she died suddenly from a previously undiagnosed heart condition when she was just 28 years old.
“Natasha and I had been together for ten years, and she had been closely involved in every aspect of my life, both personal and musical,” Arjun said after becoming
In 2019, Arjun attended CRY’s Heart of London Bridges Walk with more than 100 of Natasha’s family and friends, and held a concert (#ForNatasha) at the Hammersmith Apollo in February 2020 which raised over £32,000 for CRY.
“I was so thankful to my musical friends for taking time out of their madly hectic lives to perform at our #ForNatasha concert in February, as we celebrated her life on what would have been our second wedding anniversary,” Arjun said. “It was so wonderful to be able to raise such a huge amount of money for CRY, through one of the most spectacular Asian music shows the UK has seen. It really was a fitting tribute to a beautiful, dynamic and talented young doctor, wife, friend, fan and confidante. We were able to pull together a line-up of artists specially curated for Natasha, reflecting the music she loved and enjoyed every day. Through events such as this, and my association with CRY, I know Natasha’s life and legacy will continue to be an inspiration to others... I am immensely proud to be taking on this role of Ambassador and working with CRY towards raising even more awareness and doing what I can to help prevent these devastating and so often preventable, tragedies.”
I was fortunate to have been invited to attend the incredible #ForNatasha concert and was so impressed by Arjun’s talent and energy. He is a fantastic performer and the line-up of international artists who all agreed to take part for free was testament to the huge support Arjun already has in helping to raise funds and the profile of CRY on both the UK and global music scene.
Like all events in 2020, our events for Raising Awareness Week went virtual. Even though we were unable to get out and about as usual, CRY supporters got engaged on social media by sharing key messages to raise awareness online. Meanwhile, the CRY Great Cake Bake went ahead with plenty of supporters getting involved by baking at home, and we introduced the 12 A Week Challenge which was a great success.
We are so grateful to our supporters for adapting and taking part with all of our initiatives. You can find out more and see photos from the week on page 16.
Social media is a vital part of how CRY interacts with supporters and, first and foremost, raises awareness of young sudden cardiac death and what can be done to tackle it – from preventative measures (screening) to bereavement support for those affected by a tragedy. In the CRY Online segment, we look back at the fourmonth period the Update covers and include a small selection of social media highlights, such as Facebook posts that reached an amazing amount of people, or supporters who tweeted memorable photos at us.
Due to the continued COVID-19 restrictions and lockdowns that were in place last year, social media was a vital method for CRY in raising awareness. Our supporters continued to get involved with sharing our key messages and updates online, and a few events through the period helped us gather plenty of engagement on social media.
One of our most popular social media posts from this four-month period shared the details of the latest CRY International Medical Conference. Like most events in 2020, our conference went online, but it was a terrific event as always. We broadcast a host of excellent presentations live through the day, with current and former CRY Research Fellows and other leading experts sharing their research. To watch all of the presentations from the day, and find out more about CRY’s research developments in 2020, you can read the latest digital issue of CRY’s Research Highlights.
We also had an important anniversary in this period.
November 21st marked 25 years since CRY received its official charity status! CRY simply wouldn’t
be where it is today without the tireless help of our supporters, and we are so grateful for everything over the past 25 years. One of our Facebook posts sharing a video to mark this important occasion received plenty of interaction.
2020 was incredibly difficult. To bring the year to a close, CRY Chief Executive Dr Steven Cox shared a message to look back at the last 12 months and thank CRY families for their amazing continued support, which was invaluable to us for raising vital funds and awareness. Click the post to watch Dr Cox’s full message.
Lastly, one of our top Instagram posts from this period covered the 12 A Week Challenge, which challenged people to complete 12 miles in a week by walking, running, swimming or cycling to represent the 12 young people who die each week from young sudden cardiac death. We’re grateful to everyone who got involved. You can also read more on page 16.
Interacting with us on social media is an easy way to keep up to date with any CRY information you might need. You will receive updates on upcoming events and screenings; and photos from fellow supporters. Every share of a post helps spread awareness about CRY a little further. So, if you’d like to follow along, here’s where you can find us:
As always, Twitter was an important platform for us in raising awareness in this period. Through SeptemberDecember, CRY’s main Twitter account recorded 581,237 impressions (the number of times a post appears on someone’s personal feed).
CRY Patron Pat Jennings offered his support in November as our 12 A Week Challenge got underway. Pat shared a video message with our supporters which received 14,000 views, helping to raise awareness of what the challenge involved and encourage people to take part.
We were also thrilled to have so many supporters taking part in the Virtual London Marathon. In addition to their fantastic efforts for completing the race in such difficult circumstances, it was great to see supporters sharing photos and videos from the day and raising some awareness on social media as well.
We also share all of our new blog posts on social media, which included a piece looking back at the day Fabrice Muamba collapsed during a FA Cup match in 2012. It brought a great deal of attention to young sudden cardiac death, and spread awareness of CRY in the process. It’s safe to say that March 2012 marked a turning point in the charity’s history.
There can be no more pulverising shock than the sudden death of an apparently healthy child. Or the catastrophic grief that overwhelms those affected.
houses. A couple of them helped me get him onto the pavement and we started to give him mouth to mouth. In hindsight I am sure he was already dead when I found him. He was unnaturally cold, and was losing colour. Within a few minutes the noise had disturbed my wife Sandra and somehow she joined us on the pavement. I say somehow because she was recovering from a climbing accident we had had about two months earlier and has suffered a compound fracture of her left leg. It was in plaster, and I still do not know how she got to the scene.
Alison Cox MBE CRY Founder
The experience of coping with devastating shock can not only affect a person’s mind but also have an aggressive impact on the body.
Jeff Markham
I have never met a more composed person than Jeff Markham but when his son James died he not only had to cope with the ramifications of the tragedy but also the aggressive physical effect on his body which left him fighting throat ulcers for most of the following year. He explains:
James (left) died in November 2001, when he was 21 years old. He had left the house at about 11:00 pm to drop his car off at our garage. It was due to be serviced the following day and we suggested he dropped it off in the evening so he did not need to worry about it in the morning. The garage was about 400 yards from our home.
At around 11:45 pm I was getting ready to go to bed, and looked around the house to say goodnight to him, but he had not returned. I wondered if he had had an issue with the car, and decided to walk around to the garage. I left the house and when I got out of the drive onto the pavement, I could see something large laying half on the pavement and half in the road, about thirty yards down from the house. As I moved along the pavement I then realized it was James. Something was clearly wrong by the position he was laying in. Later by finding his keys on the pavement, and from the abrasions on his arms, and with the help of the police we thought he had been running home after dropping off the car, but had collapsed and slid along the pavement.
When I reached him I panicked and shouted for help. Within minutes we had a lot of people coming out of their
By now we had an ambulance crew working on James, and around 10 minutes later he was in the ambulance on his way to hospital. We followed in another ambulance, and the drive took about 15 minutes. Although none of the emergency crew said anything to us, because he had been unresponsive to any treatment at the road side, I think we were already thinking he had died. I don’t remember us saying anything to each other on the drive to the hospital, but I do remember us both being in tears.
When we arrived at the hospital James was already there. We sat in a corridor with a police officer for about 20 minutes and were then called into a side room and told James had died. Nobody expressed a reason why, and it might sound ridiculous but I don’t remember us asking what had happened. We were then told we should go and see him which we did. For us a terrible mistake as our lasting image of his was him laying ashen, cold and clearly dead. We were told this would help us come to terms with his death, but for us, it could have been nothing further from the truth. We had already realized he had died, and this agony could have been spared.
I have always wished I could remember the nurse who insisted we go to see him, to explain to her it was a terrible mistake. By all means give the option the see your late loved one, but not immediately after the death when in the state of shock, you are not in a position to make a rational judgement. I also think if going to see a late loved one, an undertakers would be a better environment, rather than a hospital slab with him covered in a white sheet. After being questioned by the police with some unpleasant but necessary questions – Did he take drugs? Did he have any enemies? – we were driven home, and then left on our own. I remember feeling in a complete daze. Had this really happened?
Remembering an exact timeline is difficult, but I started to develop a sore throat within days. Initially I thought this was a result of all my shouting for help at the roadside, but after several days it was clearly something else and I went to see our GP. He said I had developed throat ulcers as a result of stress, and from memory I had these for a long time. They must have been considered quite bad because I remember
seeing a specialist, and when I eventually went back to work, six months after James died, my college insisted I see an independent private specialist that they funded.
We still think of James every day, but try to keep to memories of better times. I have recounted the events of the night he died so many times it is no longer so painful, as it was in the early days, and I can think of it all a little more objectively. As examples: I remember being really angry with the police, asking questions about “did he take drugs”, but I now realize they were just doing their job. Likewise, I think the nurse who insisted we go and see James after he had died, was only doing what she thought would help.
I have now realized that holding negative thoughts can be bad for you, and for me trying to look at things in a positive or forgiving way has helped me rebuild my life. As I have said many times I live with the thought “what would James want for me.” It really helps as I know he would want me to be functional, happy and getting on with my life. I think he would be happy with what he sees, and that is a great motivator.
for the Easter break and was due to return the evening of the day he died. Jonathan had been out with his friends on the Saturday night and I heard him come in and go to bed. I always breathed a sigh of relief when I knew he was safe... little did I know. I say “little did I know” but since Jonathan was born I continually felt uneasy and deep down I knew that I would lose him at some point.
On the 11th April, I was due to take my two nephews shopping for a treat as they had come to stay (with their parents) for Easter with my Mum and Dad. I got ready and at 11am went to walk into Jonathan’s room to let him know I was leaving. As I put my hand on the door handle, I instantly knew what I was going to find. I walked over to the bed and said Jonathan’s name, but no response. I knew immediately he was dead. For a split second I felt a wave of relief... not at his death, but that the constant feeling of worry and unease was over that had lived with me for 21years. Then panic set in. I was alone in the house as my husband worked abroad at that time.
Sue Ainsworth
The horrific Tsunami of grief that engulfed Sue after the death of her son, Jonathan, frightened all those close to her. The suffering it provoked affected everyone who cared for her but felt helpless in how to relieve her pain. Sue writes:
The day that it happened and the following months have been a complete blur with only ‘snapshots’ of memories being recalled. I remember feeling completely numb and detached from the situation and the world around me. It was like a dream... But your worst nightmare. One of my very close friends was my constant companion during this time and I just remember saying to her “where do I pick up the pieces?” Of course she couldn’t give me an answer, but the range of emotion and fear I experienced terrified me. I had no idea how to navigate my way through this horrendous agony.
Jonathan (left) died in April 2010 aged 21 years. He had returned home from university
I flew downstairs and dialled 999, then everything went into slow motion. The responder on the end of the line began to tell me how to commence resuscitation, but I knew it was too late. I could tell from his colour. I rolled Jonathan onto his back and was about to start CPR but then the ambulance arrived and took over. I remember very little, but became hysterical and screamed at the paramedics to save him. I recall one of them asking me if there was anyone I could call to come and support me. I called my parents and my close friends. By this time, I was totally calm. It was so weird. I felt completely detached from the whole situation and numb. I remember ringing my parents and saying that I had found Jonathan collapsed and “it didn’t look good”. I was so calm and collected and kept wondering why I wasn’t falling apart.
The day is fragmented and recalled by snapshots. Friends and family arrived and were crying and upset. I was comforting them and saying, “it’ll be ok”. I now know that I had probably been too overwhelmed to comprehend what was happening so had basically shut down – a defence mechanism, and my body and mind going into some sort of survival mode. Eventually the paramedic came downstairs and said there was nothing more they could do. I just sat there and nodded, completely numb. The police then arrived and took statements, then scene of crime officers in white suits. It was like something from a detective series. They took Jonathan’s phone and searched his room. I didn’t mind this as I just wanted to know what had happened! Needless to say, nothing was found.
The undertaker came to remove his body and this was what I found really difficult and still struggle with today. I couldn’t say goodbye. I let them take him while I stood in the kitchen, blocking out the sound of them taking him away. It was too painful. I said my goodbyes to him at the funeral
parlour where I remember asking them to change his hair style as he would have hated the way they had done it!
Following this I could never go back to the house again. I moved in with my parents. I returned for necessities, but found it too horrific to stay. I suffered flashbacks of the day and would be physically sick when I opened the door and smelled the usual smell of an air freshener that I had plugged in in the hallway. It just brought everything back. I remember braving going into his bedroom and just screaming with anguish and pain at the thought of never seeing him again.
A few days later my boss from work had called and left some information about CRY as she had been affected. I really wish she had spoken to me and been honest about the implications as I was not in the right frame of mind to comprehend that Jonathan should have had the necessary cardiac investigations to try and ascertain his death. This later led to many failings by our coronial system, which is another story. Once I had found CRY and was supported by them, I realised that Jonathan’s death had massive ramifications for my daughter and myself. I had lost one child. I couldn’t lose another! I remember calling Alison twice just to clarify what I was hearing, that there could be some hereditary cause for Jonathan’s death. This was overwhelming as not only was I struggling with losing my son, but now there was a risk my other child could be affected. Thankfully she was screened and nothing was detected.
Jonathan died at home and I could never return to the house so we moved in with my parents. A year later I sold it. It was a house of horrors as far as I was concerned. Luckily I had a very understanding and supportive family and husband who allowed me to grieve in my own way... albeit bizarrely at times. I would try and fill my days with socialising and keep as busy as possible. I would go out and feel a need to return home, and when home would want to go out. Looking back I realised I was struggling to find a place where I could find peace. I kept constantly busy. My way of coping was to try and avoid my thoughts of what had happened. I started fundraising for CRY, working extra shifts at work, moved house... anything to face the horrendous pain I felt. After a year and on the first anniversary, I just suddenly ground to a halt. I was emotionally and physically exhausted. I accessed counselling again and had time off work. My friends were aware what was happening, but I continued to keep constantly busy regardless. Again, I had a fantastic support network to help pick me back up again.
Losing Jonathan has certainly made me re-evaluate my life; who and what was important. Close friends and family were, and still are, important to me. I find that since events in 2010, I am much more selective with my support network. I don’t have space in my life for shallow or onesided relationships anymore. CRY was definitely a life-line
too. It made me aware that I was not alone. Speaking with another mum gave me hope that I could survive and normalise my feelings. I also accessed counselling very early in the process with a therapist from my work place. This was invaluable and without a doubt, saved my life. It was a safe place to explore my feelings without judgement and reassurance that I wasn’t going mad!
Having the counselling (on several occasions), along with the support from CRY, resulted in a change of career for me. I trained as a Bereavement Supporter with CRY and found it so enjoyable (despite the nature of the content) as well as insightful. I realised that this was a path I wanted to continue on a permanent basis. I qualified in 2015 and left my career as a midwife to concentrate on this new role. Not only has this been so rewarding, but also helped me with my own grief. It hasn’t been easy as it has involved awareness of feelings that I have tried to conceal or bury, but it was totally worthwhile.
It has been a long, slow and extremely painful process. If someone had told me how I would cope after losing Jonathan and how my life would change I would never have believed it. Now, although I still miss him terribly and have my ‘bad days’, my life is actually richer. I appreciate life more and take pleasure from the simple things, such as being outdoors, going for long walks and spending time with people I value and care about. I feel Jonathan would be proud of what I have achieved, but I do know I could not have achieved it without the support from CRY, family and friends.
The physical response of the shock can take a long time to dissipate and can manifest in other ways. Jeff experienced flashbacks and a recurring dream for some time which he found very disturbing and left him questioning whether he would ever be OK again. He and his wife Sandra agreed that ultimately grief is a very personal experience but being able to talk openly and bounce ideas off each other has been a cornerstone in rebuilding their lives. The shock for Sue left her feeling numb and detached from the world around her. The range of fear and emotion she felt terrified her. But her husband and family allowed her the space to grieve in her own way and training to be a counsellor helped her come to terms with her grief. The combination of shock and grief can have catastrophic consequences. It would be advisable to discuss the support available with your GP. Many people have also found it helpful to speak with others who have been through a similar experience and understand the immense shock and grief. CRY can help to facilitate this through our private Facebook groups and telephone bereavement support.
For more information on the bereavement support CRY offers, please go to c-r-y.org.uk
Susanna Cooper, Laboratory Technician Khari Edwards, Laboratory Technician
We have maintained our service throughout the COVID-19 pandemic which is so important for families at this stressful time. Our database forms a valuable source of research within St George’s clinical academic cardiology group resulting in publications in high-impact journals.
Figures for both hearts and genetic material sent to our department have also steadily been increasing over the years.
We were able to make a diagnosis of the cardiac cause of death in all cases with majority being sudden adult death or cardiomyopathies (75% of cases), all of which are important for family screening.
Invited lectures
• European Congress of Cardiology - Role of Pathologist in sudden cardiac death. Digital recording.
• September 22nd – Argentine Federation of Cardiology – Sudden cardiac death in the Athlete. Digital recording.
September-December 2020
• October 22nd – Queen Mary University of London forensic Science MSc. Cardiac Pathology.
• October 29th – European Society of Pathology. Sudden death and molecular autopsy. Digital recording
• 4th November – MRes/MSc in translational medicine – St George’s University of London – recorded lecture – sudden cardiac death – abnormal electrical activities in heart.
• 18th November – SADS (USA ) Webinar – Identify the pathology and causes of sudden cardiac death in the young Importance of pathology and Interaction with families.
• December – Lecture by Zoom to International Academy of Pathology.
Joseph Westaby our research fellow has upgraded his degree to PhD ongoing for next 18 months Chris Miles has submitted his PhD on SADS and arrhythmogenic Cardiomyopathy and Brugada which has been accepted with few corrections.
Emelia Zullo lab tech – Has started an MSc in Biomedical Science for 2 years at Kingston University and was awarded the Annual Fund Scholarship.
We continue to teach on Master Degree courses at St Georges Medical School via Canvas and Forensic Medicine via Zoom at Queen Marys University, London. We also continue to give evidence at inquests by Zoom
To learn more about the research completed at the CRY CCP and Professor Mary Sheppard’s work, you can watch her presentation at the 2019 CRY Family Research Day on our YouTube channel here: https://bit.ly/2Dmg6RU
Similarly to the rest of CRY’s events and fundraising during 2020 due to the COVID-19 pandemic, the CRY Conference had to move online, with presentations being broadcast live through the day.
For the first time, on October 16, our annual conference was a virtual event, which offered delegates the opportunity to sign up to watch talks from some of the world’s leading experts in sports cardiology and young sudden cardiac death. While this was rather different from our typical annual conference in London, we still had a fantastic day of talks, with those watching getting involved during presentations by taking part in polls and answering questions, too.
As always, we were pleased to share the insight and research of many leading experts, including some of CRY’s present and past Research Fellows.
CRY Consultant Cardiologist Professor Sanjay Sharma began the day with his presentation, “Athlete’s heart or dilated cardiomyopathy; The role of exercise imaging”. Professor Sharma discussed methods of differentiating physiological increases in heart size from dilated cardiomyopathy (DCM).
Next, former CRY Research Fellow Dr Aneil Malhotra talked about the challenges of screening in athletes, focusing on the black athlete’s heart. As Dr Malhotra noted at the beginning of his presentation, T-Wave inversion affects one in 30 young athletes and is six times more common in black athletes. T-Wave inversion is present in cardiomyopathy, which increases the risk of exercise-induced sudden cardiac death threefold.
As he pointed out to begin his talk, there is a lot of data about how this is done when dealing with hypertrophic cardiomyopathy and arrhythmogenic right ventricular cardiomyopathy, but there is little data covering DCM. Professor Sharma looked at this topic in extensive detail, and discussed the value of using stress echocardiography due to its better diagnostic ability.
Professor Thijs Eijsvogels from Nijmegen, Netherlands, who is an associate professor at the Radboud University medical centre, gave the second presentation of the day. Professor Eijsvogels looked closely at troponin release following endurance exercise in athletes and what it means. He discussed how exercise-induced increases in troponin are very common following endurance exercise even though the degree of increase can vary significantly depending on the individual, as well as some findings that require more research.
Furthermore, as CRY research has shown, young sudden cardiac deaths are six times more common in young black footballers. This disparity is a problem, and Dr Malhotra went on to look at other conditions and research, as well as what studies need to be completed to help us truly understand the long-term implications of electrical and structural differences in the hearts of black, white and mixed race athletes.
The next presentation of the day came from Professor Domenico Corrado, who has frequently spoken at the CRY Conference for many years now. Professor Corrado gave a talk entitled “Ventricular Ectopy in Athletes Made Simple” and focused on how to interpret different conditions and examine the risks involved for athletes. He concluded that the risk stratification of athletes with ventricular arrhythmias has evolved to the current perspective that prognosis is related to the morphology, complexity and response to exercise, rather than to the number of premature ventricular beats. Uncommon ventricular arrhythmia morphology (mostly right bundle branch block/
superior axis) and worsening with exercise could be associated with concealed myocardial fibrosis.
Professor Mats Börjesson’s presentation, “The veteran athlete’s coronary arteries: What to expect,” followed. Professor Börjesson first defined what a veteran athlete is, explaining that they are typically over 50 years of age and take part in competitive sports (mainly endurance events). Regular physical activity has plenty of health benefits, but the problem is that high intensity activity can also be associated with an increased risk for those with an underlying cardiovascular condition.
unknown. However, we do know that it accounts for 5-15% of all sudden cardiac deaths in young athletes and 20% of sudden deaths in military recruits, which, as Dr Gati noted, suggests that exercise is an important trigger in myocarditis. Dr Gati went on to discuss methods that can be used to diagnose myocarditis, and concluded that CMR is the most effective non diagnostic method of diagnosis acute myocarditis.
Professor Börjesson explained that you can expect the presence of subclinical coronary artery disease in veteran athletes, which means that risk evaluation should be completed for all veteran athletes to look at their level of exercise and sports participation. For veteran athletes who are known to have coronary artery disease, an anatomical and functional evaluation should be completed before they participate in high-intensity sports.
Former CRY Research Fellow Dr Sabiha Gati spoke as well, and discussed “The assessment of athletes post myocarditis. What does CMR add?” Dr Gati discussed the subject in plenty of detail, covering everything from the natural history of myocarditis, to the role of cardiovascular magnetic resonance imaging (CMR) is used in both the diagnosis and determining prognosis in myocarditis.
The precise incidence and prevalence of myocarditis is
Dr Michael Papadakis gave the final presentation of the day, “COVID-19 and the athlete’s heart.” Dr Papadakis tackled this important subject, and outlined the effects of COVID on the heart, advice for exercising during the COVID-19 era, and provided the rationale for who should have cardiac investigations.
Dr Papadakis began by discussing symptoms of COVID and how different individuals can be affected, including potential impacts on the heart (for example, research showed that up to 30% of those admitted to hospital have elevated troponin, which usually indicates more severe disease).
After covering the benefits of exercise, advice and how to return to exercise after testing positive for COVID-19, he laid out a detailed framework for completing cardiac investigations for different individuals.
We are grateful to everyone who followed the conference on the day, and to all of our speakers for giving such fantastic presentations on a range of topics.
On Saturday the 14th November 2020, 175 participants started to clock up the miles by walking, running, hiking, cycling and jogging. The 12 A Week Challenge took place during Raising Awareness Week which ran from 14th-22nd November 2020.
Each of the 12 miles completed represented the 12 young sudden cardiac deaths that happen every week.
Congratulations and well done to everyone who completed the 12 A Week Challenge. Your efforts have been amazing and we are pleased to announce that a fantastic total of £26,800 has been raised to date, by all 175 participants. We are so grateful to each and every one of you who took part and to your friends and family who supported you through this challenge as raising awareness for CRY is vital.
As the week went on, participants shared photos and updates of their challenge in the Team CRY Fundraising Group on Facebook. Participants congratulated each other, shared their stories and reasons for taking part. For many participants, taking on the event was a mix of emotions as the miles were completed, remembering those who have suddenly died.
We were also grateful to CRY Ambassador Ben Coleman (right) for taking part by getting out on his bike and continuing to help raise awareness of CRY and young sudden cardiac death.
We heard stories from participants who added to the challenge by walking 12 miles a day, 10k to mark 10 years of a family member, 12 miles x 12 days and many more in memory of someone special and to support CRY. In total, over 2,100 miles were completed.
Thank you to all of our supporters who took part in the ninth annual CRY Great Cake Bake on Friday 20th November, as part of Raising Awareness week. We are so grateful to you and to your family, friends and colleagues who have helped to make the first virtual Great Cake Bake a success.
Thank you once again for taking part in the CRY Great Cake Bake and for your support of CRY’s campaign. We hope to have you join us for the 2021 event on Friday 26th November.
Thank you to everyone who took part in Raising Awareness Week 2020. It was a hugely successful week, with many supporters taking part from sharing posts on social media, to choosing a fundraising challenge and getting involved in your local communities.
On Saturday 21st November we celebrated 25 years since CRY received charity status, and it was the perfect time to reflect on the work done over the past two and a half decades.
Raising awareness of CRY and its objectives is important all year round, so please keep on liking or sharing posts on our social media pages, and sharing CRY’s YouTube videos. It all helps to raise awareness and save young lives.
Through raising awareness of these conditions, the public, medical and sporting communities will be alerted to the symptoms that can lead to a young sudden cardiac death, as well as the potential risks that these conditions carry for an asymptomatic population.
This year we shone a spotlight on CRY’s important research, and our support services.
For the first time in the history of the London Marathon, the event went virtual on Sunday 4th October!
Despite the difficult year 2020 has been, 38 CRY runners, all spread across the UK, took on the challenge of running a marathon in their local area. Some dressed as super heroes and some joined by their four legged friends, but all raising amazing funds and awareness of CRY.
Congratulations again to team CRY, we can’t thank you
Gail Benghiat in memory of Ben O’Connell
Victoria Cartmell
Nick Champion in memory of Isabelle Tudisca
Lee Davies in memory of Katey Louise Davies
Peter Elkins
Sean Fitzpatrick in memory of Elise Fitzpatrick
Paul Forsyth in memory of Ben Forsyth
Ryan Franklin in memory of Chris Williamson
Charlotte Galvin in memory of Elise Fitzpatrick
William Harris in memory of Emily Harris
Harry Hawkes in memory of Freya Cox
Mike Hennan in memory of Jenny Kerwood
Heather Herring in memory of Grant Munro
Stephanie Ince in memory of Mike Ince
Kirsty Jones in memory of Oliver Marsden
Kit Lam in memory of Simon
Jo Lawrence in memory of Adam Lewis
Phoebe Lawrie in memory of Katie Benson
enough for your kind support. Everyone at CRY hopes you all enjoyed a well-earned rest!
Thank you to all who have sent in photographs and videos so far. It was so lovely to see that so many of you had family and friends out on route with you, either running side by side or cheering you on through the wind and the rain.
The determination and dedication to CRY you have all demonstrated is truly inspiring.
Alastair Lawson
Sam Matthews in memory of Aaron Dixon
Jessica McCloskey in memory of Tiffany Jane Andrews
Karen Nethersole
Lucy Perrins in memory of Thomas Fleetwood
Carol Quoi in memory of Lynn Kerr
Abby Ravenscroft in memory of Aaron Dixon
Sheral Russell in memory of Amber Robinson
Andy Scott in memory of Nolan Foley
Janet Sharples in memory of Ryan Terry
Robert Simpson in memory of John Clune
Christa Speer
Juliet Stallard in memory of Mike Ruinet
Simon Stevens in memory of Sgt. Matt Ratana
Helen Stevenson in memory of Martyn Luckett
Fiona Stewart in memory of Robert Rowan
Vu Vo
Wendy White
Orla White
Jo Wint in memory of Andy Gard
CRY received the following online donations from Virgin Money Giving Someone Special pages in 2020.
• Adam Birch’s fundraising page in memory of Ben Birch raised £1,179.
• Gabby Broadhurst’s fundraising page in memory of David Green raised £1,265.
• Gary Carscadden’s fundraising page in memory of Matthew Carscadden raised £120.
• Lauren Dean’s fundraising page in memory of Jake Dean raised £279.26.
• Chris and Sue Dewhirst’s fundraising page in memory of Matthew Dewhirst raised £370.
• Richard and Donna Fell’s fundraising page in memory of Josh Fell raised £582.03.
• Stephen and Sheralyn Hammond’s fundraising page in memory of Ben Hammond raised £10,210.
• Charlotte Henderson’s fundraising page in memory of Martyn Luckett raised £781.
• David and Susan Hughes’ fundraising page in memory of Daniel Hughes raised £6,738.83.
• David Jewell’s fundraising page in memory of Damien Jewell raised £300.
• Audrey Jones’s fundraising page in memory of Alexander Jones raised £2,854.84.
• Jessica Knapp’s fundraising page in memory of Adam Knapp raised £1,513.12.
• Andrew and Rachel Mitchell’s fundraising page in memory of Rosie Mitchell raised £110.
• Yvonne Moss’s fundraising page in memory of Luke Moss raised £305.
• Deb Pallace’s fundraising page in memory of Kyle Jenkins raised £153.
• Stephen and Nadia Pomfret’s fundraising page in memory of Alessandro Pomfret raised £2,221.
• Alan and Jill Rutter’s fundraising page in memory of Luke Rutter raised £2,391.90.
• Kenny and Doreen Seymour’s fundraising page in memory of Matthew Seymour raised £2,849.26.
• Adrian and Debra Standerwick’s fundraising page in memory of Samuel Standerwick raised £1,191.23.
• Emma Steers’ fundraising page in memory of David Dee Wild raised £350.
• Martyn Souch’s fundraising page in memory of Martyn Luckett raised £225.
• Tim Douglas’s fundraising page in memory of Sue Millar raised £555.
• Ellery McGowan’s fundraising page in memory of James McGowan raised £1,498.
• Ben Robinson’s fundraising page in memory of Enid Hawkes raised £695.90.
• Laura, Olivia and Juliet Adams’ fundraising page in memory of Stephen Adams raised £4,497.68.
• Frankie and Kim Hughes’ fundraising page in memory of Dan Hughes raised £2,433.94.
CRY received regular donations in memory of young people from the following supporters in 2020:
InMemoryof DavidAitchison
Jenny Aitchison donated in memory of David.
InMemoryof JaneAllen
DJ Allen donated in memory of Jane.
InMemoryof
BrettBeasey-Webb
Offley Parish Council donated in memory of Brett.
InMemoryof
ClaireBeer
Margaret donated in memory of Claire.
InMemoryof EwanBellamy
Mrs Judie Street donated in memory of Ewan.
AlexanderBrinck-Johnsen
J Brinck-Johnsen donated in memory of Alexander.
InMemoryof EdgarByrne
Amanda Barker donated in memory of Edgar.
Karen Byrne donated in memory of Edgar.
JennyConway
D Kenyon donated in memory of Jenny.
InMemoryof FreyaCox
Izzy Phillips donated in memory of Freya.
InMemoryof AndrewDale
Joyce Dale donated in memory of Andrew.
InMemoryof SebastianEnglish
Mark Davies donated in memory of Sebastian.
InMemoryof HarryFaulkner
Barry Gilbey donated in memory of Harry.
InMemoryof JFletcher
Wendy Fletcher donated.
William Barnett donated in memory of Andrew.
Carole Green donated in memory of Jeremy.
Richard Hales donated in memory of Matt.
Jade Edgington donated in memory of Graham.
P Tayler-Jones donated in memory of John.
L McBrearty donated in memory of Lauren.
Kathryn Howorth donated in memory of David.
Mark Bartlam donated in memory of Daniel.
C A Hustwit donated in memory of Neil.
Fatima Ibrahimi donated in memory of Charlie.
J Vaughey donated in memory of Ariana.
Roy Lovatt donated in memory of Lisa.
J P Krish donated in memory of Judith.
David Lawrence donated in memory of Natalie.
R Bagguley donated in memory of Jane.
Carmel Merrick and S Merrick donated in memory of Josh.
InMemoryof RichardMerriman
Steve Walters donated in memory of Richard.
InMemoryof AdamMiddleton
Donna Meredith donated in memory of Adam.
InMemoryof PardeepNagra
R Nagra donated in memory of Pardeep.
Adam and Lucy Turner donated in memory of Christopher.
JamesPatrickPatterson
C Patterson donated in memory of James.
Patrick Mullens donated in memory of Jack.
M E Bonstow donated in memory of Tanja.
Dr Rejia Ullah donated in memory of Alex.
V Macleod donated in memory of Alex.
Robin Simpson donated in memory of Ben.
Jeanette Simpson donated in memory of Paul.
Phil Sparrow donated in memory of Kieran.
A and Sue Spurling donated in memory of Rupert.
G and C Stewart donated in memory of Natalie.
M Styles donated in memory of David.
Glenis Taylor donated in memory of Claire.
Maureen Richardson donated in memory of Katherine.
Hayley Pizzey donated in memory of Matthew.
June Jacob donated in memory of Charlotte.
CRY also received regular donations from the following supporters in 2020:
Mr C Barnes | C Booth | S and J Clark | Rachel Davies | Zenia Duell | John Fell | Mulika Harnett | Annie Hartley, in celebration of her granddaughter Penny Ashmore surviving 4 cardiac arrests at age 18 | Peter James | Oliver Joy | Jean Massey | H Mestchian | Daniel Ogilvie | Josephine Pwajok | Doreen Roberts | James P Stead | Matthew Steeples |
Entries appear in the following section according to when CRY sends written receipt for funds raised. The following fundraising was receipted from September to December 2020.
Unfortunately, due to the size of the Update, with so many fundraisers to acknowledge and there being some overlap with memorial fund names, there can occasionally be mistakes. We always strive to enforce new methods to eradicate such administrative errors, but we apologise if you have ever been affected in some way by this.
If you see a mistake in the Update or you have any questions, please do not hesitate to contact me at tom@c-r-y.org.uk.
Here is a correction from issue 82 of the Update.
Ebony Moore sent in a donation of £267.25 raised from a charity night, but her surname was incorrect.
We apologise for this mistake.
Mary Abraham sent in donations totalling £407.38, including: £76.38 raised at Angela Bird’s 65th birthday bash; and £331 to commemorate Philip’s 25th anniversary.
Kate Bome raised £2,072.50.
Phill Hallett ran a half marathon and raised £465.
Sky UK Ltd donated £100.
Shelley and Susanna took part in the Borneo Half Marathon and raised £1,172:
“We are delighted to say we finished the half Marathon and in a good time of 2hrs 48mins! We are over the moon and still buzzing that we managed to complete it. The atmosphere was brilliant along with a pretty unreal sunrise!
“We are so overwhelmed with the support and donations we have received. We have went over our targets by more than double and still receiving donations.
“We loved it so much we are already looking into our next challenge!”
Richard Baker took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £220.
Josie Gibberd raised £1,088.25 ahead of the Edinburgh Half Marathon before the event’s cancellation.
Mike Fleet sent in £150 raised from book sales and a donation by Valerie Allan.
Ewan Mackie completed his challenge of breaking the UK Everest Record, and also achieved the Junior World Record, and raised £795.
Sarah Yorke donated £117.
“Team Toby” and team “Toby Berlevy”; Julia Maxwell, Robert Maxwell, Francesca Unsworth, Tom Bryan, Leigh Spence, Stephen Mangan, Harry Mangan, Frank Mangan, Stefan Lissner, Kathleen Soriano, Peter Greenhough, Alex Prebble, Keren Eliot, Tilly Sharp, James Davis, Natalie Brown, Vivien Ackland-Snow, Kate Bryan, James Bryan, Juno Bryan, Ali Brodie, Alan Brodie, Susan Judd, Susan Davies, Stuart Prebble, Samantha Richards, took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £995.
Dean Harrison climbed Scafell Pike and raised £2,285.
Lizzy Wills donated £100.
Caroline’s colleagues at Laing O’Rourke PLC sent in donations totalling £676.
Susan Blair donated £215.
Michael O’Connor organised a weekly premiership score predictor and raised £350.
Dave Boulton sent in £315 raised at a golf match.
• Gordon Brember forwarded a donation of £500 raised through Sam’s sunflowers at Stoke’s Fruit Farm shop in Haying Island.
• Gordon Brember took part in the 2.6 Challenge and raised £128.92.
• Guillaume Watkins donated £200.
• The Hugo & Poulien Ruys Trust donated £150 in respect of Sophie Newton’s Iron Man Challenge.
• CRY Ambassador James Gall took part in the 2.6 Challenge and raised £913.
• Rachel Dingle organised a charity rugby match and raised £318.
• Tarryn Hill took part in a pink collar boxing event and raised £530.
• Ashley Blakemore completed a skydive and raised £450.
• James Wilinson donated £100.
• Sally Cantello forwarded £145 donated by friends and family.
• Louise Hammond donated £100.
• The Bottle Bank donated £187.
• Norman Cantello donated £100 in memory of his step-grandson.
• Libby, Adam, Jamie, Alice, Edward and John donated £1,000.
Hillary and Bill sent in donations totalling £460 raised from the sale of homemade jams and a hedgehog house, and a further donation of £25 gifted to Bill on his birthday.
Nicola Burndred forwarded £150 raised by Andy Bolton and the footie teams.
Susan Camilleri took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £1,085.
April Woodnutt raised £680 from various fundraising challenges.
Angela Child donated £250 in lieu of their line dancing event.
• Andrea Clapham donated £100.
• Emma Fleming donated £100.
The ASDA Foundation sent in £300 raised through the green token scheme at the Barons Quay, Northwich (SM) Asda store.
Caroline Clune-Moore sent in £7,429.60, in respect of the Global Beyond Excellence Award posthumously awarded to John by Jacobs Engineering.
“We had a Christmas afternoon tea and grotto selling
mystery gifts and sweet jars for a few of the girls from work, and raised £115. Just four of us in my shed, small but cosy.” Karen.
• CRY Ambassador Arjun Coomaraswamy raised £32,113 through holding a concert at Hammersmith Apollo, in memory of his wife.
• Sharan Saroya took part in the Windsor Lakeside 10k and raised £1,789.31.
The Charles Hayward Foundation donated £1,000.
Nitin Pandya forwarded £402 raised by a work fantasy football league. The league was won by Henry Swindell who nominated CRY to receive the winnings.
• Archie Qualtrough took part in a 24 Hour Golf Challenge and raised £321.75.
• Robert Thorpe took part in the #rideforcharlie - Heart of France and raised £103.
• Rachel Hodges cycled 100km in October and raised £100.
Chrissie Dearness took part in Sober for October and raised £270.
Farringtons School raised £181.57 through their Year 5 girls taking part in a netball tournament.
Rosalyn Day donated £100.
Kevin Duffin and Uel Linton took part in the Newtownards Half Marathon and raised a further £1,018.30.
ServiceMaster Clean donated £1,300.
Scott Donegan and Chris Delaney completed a night walk up Snowdon and raised £1,135.06.
Urmi Desai donated £2,500.
• The Homebuilding Centre sent £250.
• Sue and George took part in the 2.6 Challenge and raised £340.
• Matthew Nelson sent in £245 representing donations made in lieu of floral tributes, in memory of Elaine Nelson.
• Richard Yarwood moved 1 million kilograms in 24 hours and raised £374.87.
• Running Bear Sports donated £100.
• Staff at Co-op raised £1,278.03.
• Elsie Drawbridge sent in £300 in memory of her grandson.
• Kathleen Fleming sent in £250 in memory of her great nephew.
• Hilary Edwards sent in donation totalling £185.66.
• Vanessa and Rosie completed the South West Coast Path Walk and raised £5,615.
• Heptonstalls sent in £9,543.93 raised from unclaimed client monies.
• Anne Embling sent in donations totalling £595 received in memory of her husband Chris, Rory’s father.
Hugo Donnelly and Charlie Warren raised £110 ahead of the Devizes to Westminster Canoe Race before the event’s cancellation.
Luke Philpott raised £295 ahead of a white collar boxing event before the event’s cancellation.
Warren Harris donated £1,000.90.
Alice Heaton, Kerstin Clowes, and Michael O’Connor Atkin took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £330.
Jill Findley donated £100.
• Marie Fitzgerald forwarded £10,000 donated by Multi Assett Altern.
• Scarlett Mollett raised £345.00 ahead of the Vitality London 10,000 before the event’s cancellation.
Nuclear Rookies Team took part in a Nuclear Race and raised £1,110.
• Katie Murray took part in The 3 Month Challenge and raised £1,030.
• Mark McGuire ran 30 Marathons in 30 Days and raised £25,208.41.
• Alastair Webb raised £500 ahead of the Trans Alba Race before the event’s cancellation.
• Martin and Oli Blyth completed the South Downs Way in a day cycle challenge and raised £636.
• Richard Rothwell completed the North Coast 500 Cycle Challenge and raised £2,265.
Araminta, Clair, and Ruby took part in the 12 A Week Challenge and raised £235.
Kate Fox forwarded £100 donated in lieu of floral tributes, in memory of Laura’s grandma, Rosemary Preston.
Frinton Golf Club donated £275.
Jackie German sent in £165 collected at her brother’s shop.
• Linda Goodwin sent in donations totalling £203 raised by holding car boot sales.
• The Royal Order of Buffaloes - Unity Lodge Gloucester presented Linda and Geoff with a cheque for £1,200 raised from bucket collections and donations from members.
• Jean Brock sent in £100 in memory of Beryl Infante.
• Michael Infante sent in £100 in memory of Beryl.
Leon Griffiths sent in £3,500 raised at a charity golf day at Maldon Golf Club.
Diana and Andy Hunt took part in the 2.6 Challenge and raised £260.
Hannah Scott raised £600.07 ahead of the Paris Marathon before the event’s cancellation.
Ian Hallt raised £785 ahead of the Testway Ultra 40 before the event’s cancellation.
Brendan Handling raised £453 through a Facebook fundraiser.
Ann Harbour sent in £245 representing donations received in lieu of flowers, in memory of her husband, Steven.
Heywood Cricket Club held a memorial cricket match and raised £100.
Kath Dickinson donated £500 in memory of her grandson.
• Throughout lockdown, Sarah Taylor held a Wayside stall in Catterall selling plants, jigsaws, books and DVD’s and raised £787.50.
• Nathan’s Wastesavers sent in £160.40.
• Mark Jones took part in a cycle ride and raised £553.
• Paula Hesmodhalgh sent in £126.77 raised through
Churchtown in Bloom.
• Nathan’s Wastesavers donated £240.
• Sandra Thompson sent in £165.50 representing donations received in lieu of floral tributes, in memory of her mother, Jean Hill.
• Paula Hesmondhalgh forwarded a donation of £500 raised by the Quilters Quarters mask making.
Tony Hillier sent in £250 in lieu of gifts.
Daniel Wilson raised £160 from the sale of cufflinks.
Jane Turner donated £100.
Amelia Deacon organised the Alex Hubbard Memorial Football Tournament and raised £2,676.02.
Andrew Jessop and Andy Plant took part in the Stafford Half Marathon and raised £400.
• Jamie Foote took part in the Hux Crux 2020 > Game On Challenge and raised £210.30.
• Enka McEvoy took part in the Hux Crux 2020 > Game On Challenge and raised £228.81.
• Fen Winters took part in the Hux Crux 2020 > Game On Challenge and raised £225.
• Rouben Freeman took part in the Hux Crux 2020 > Game On Challenge and raised £290.99.
• Ralph Lauren Cheshire Oaks collected £301.05 at their Mike Fest Event.
• Katie Alcock sent in £696 on behalf of Charles Stanley & Co Ltd.
Thomas Jackson organised a 24-hour charity livestream and raised £1,053.75.
Louise Medforth raised £1,234.64.
Valerie Jennings donated £100.
Mr Jones sent in £105.90 representing donations
received in lieu of flowers, in memory of his brother.
Audrey Jones took part in the Remembering Alex - Great Orme Walk and raised £1,420.
• Andrea Joyce sent in £150 raised by the Kington mens golf lockdown league.
• Luke Jordan sent in £200 raised through his Halloween House event.
• Andrea Joyce sent in £755.
• “Team Andrea”; Andrea Joyce, Ruby Joyce, Carolyn Brookes, Cerys Morgan, and Clair Stenhouse, took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £2,445.
• Lady Hawkins School donated £811.
Sarisbury Athletic Cricket Club held a memorial match including a raffle and BBQ and raised £225.
“Team Tash”; Emma Tilley, Amy Dimartino, Paige Westhorpe, and Alexis Kay, took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £930.
Paul Clark took part in the 12 A Week Challenge and raised £100.
• Leanne King donated £250 in memory of her husband.
• Claire Lish donated £100.
Samantha King took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £510.
• Lloyds Bank sent in a matched giving donation of £500 in respect of Megan Williams fundraising efforts.
Pete Ledgard took part in The 2.6 Challenge and raised £262.
Team “Miriam’s Marchers”, Nicola Lee, took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £697.
• Daniel Toffolo donated £100.
• Peter Loncaster donated £100.
• Autologic Hessle Ltd donated £100.
Dionne Poth raised a further £527 ahead of her skydive before its cancellation.
Jonathan, Jane, Andrew, Aaron, Amber-Leigh and Matthew took part in the Bristol Half Marathon and raised £325.
• Megan Williams sent in £545 raised through a ‘Guess the number of teabags’ competition, to mark what would have been Carli’s 40th birthday.
• Nick Hildyard donated £100.
• All Saints North Cave Church Charity donated £500.
Lucy Goodwin raised £9,211.72.
Deborah Loveday donated £250.
Harriet Serpis sent in £400 on behalf of CMS Cameron McKenna Foundation.
Fergus Gallagher took part in The 2.6 Challenge and raised £201.
Pat Jones donated £200 in memory of her son.
Elinor Hart took part in various fundraising activities to raise money for a heart screening day and raised £6,047.68.
Peter McAvoy left a legacy of £24,871.14 following his death in 2018.
Malcolm and Janette Pollard donated £100.
Aravon McCann sent in £225 raised from re-homing kittens.
Ellery McGowan raised £1,373 by making Liberty Lawn face masks.
Julie Meadows sent in £300 representing donations received in lieu of floral tributes, in memory of Liam’s grandmother, Jeannie Stenning.
Stacey Egginton and Stephanie Smith took part in the 12 A Week Challenge and raised £340.
Nicola Merriman sent in £130 raised through her Nordic Walks group.
Sophia Stiling took part in the Bath Half Marathon and raised £200.
AS & K Communications donated £500.
Natasha McGovern sent in a total of £2,568.67 representing donations received in lieu of floral tributes in memory of her cousin.
• Daniel Barry donated £100.
• Hornsea School held a non-uniform day and raised £385.
Manisha Singh completed a 25-mile swim challenge and raised £1,140.
Oliver Hassey raised £295 ahead of the Paris Marathon before the event’s cancellation.
Colin Mulford sent in £150.
Pam Munro and Rachel Ball donated £200.
Gary Murgatroyd forwarded a donation of £1,800 in behalf of ‘Sat John Port Academy.’
Amanda Topp raised £2,085.
Cath Nee held a garage sale attended by friends and neighbours and raised £470.
• Theo Newton donated £150 in memory of his brother.
• Rock Solid Distribution Ltd donated £150.
• Rerun Streetwear donated £150.
Jon and Alison Brailey donated £150.
• Luke Grounds took part in the St Helens 10k Run and raised £255.
• The Warrington Team took part in the Virtual Three Peaks Challenge and raised a combined total of £988.22.
Maureen Fletcher sent in £100 to mark the 11th anniversary of Peter’s death.
Julie Stanbrook donated £100.
David Turschwell donated £200.
Bridget Marr donated £150 in lieu of Christmas cards.
JamesPatrickPatterson
• Jesper Jonsson donated £100.
• Mr Watters donated £100 in memory of James’ father, Peter.
• Cheri Ludden donated £100 in memory of James’ father, Peter.
• Robert Johnson donated £100 in memory of James’ father, Peter.
• Catherine Patterson sent in £460 representing donations received in lieu of floral tributes in memory of her father, Peter Patterson.
• Kelvin Wilson forwarded £1,370 raised at a charity golf day.
• Kelvin Wilson donated a further £100.
JenniandDavidPaul
Liberton Primary School donated £200.
JosephPearceWillis
Sarah Willis took part in The 2.6 Challenge and raised £104.
DuncanPhillips
Beth, Sam and Tom took part in The 2.6 Challenge and raised £653.20.
JakePickford
Gaye Pickford forwarded a donation of £139.20 raised by Idris Davies School.
Collingwood College held a charity fashion show at Durham University and raised a further £724.16.
JohnPirie
• Leona Sandison sent in £380 raised through the Whalsay virtual Fun Run.
• Sibhan Pirie sent in £210 raised by Margaret Hughson from making and selling a quiz sheet.
AlessandroPomfret
Sasha, Massimo, Will, and Ollie ran 1 Mile an Hour for 24 Hours and raised £1,269.
Rita Ponting sent donations totalling £156.67.
Elliot and Sian took part in a sponsored head shave and raised £518.
Mount Anvil donated £600.
Chris Richardson donated £100.
• Heather Reid forwarded a donation of £2,291.50 raised by Pride of Kiveton Lodge 7651.
• Tina Moroney donated £200.
• H Keeton Funeral Directors sent in £446 representing donations received in lieu of floral tributes, in memory of Robert Crawshaw.
• Richard and Patience raised £100 from their home grown vegetables.
Philip Makepeace organised an NFL predictions league and raised £120.
Ashleigh Collie sent in £2,000 representing donations received in lieu of floral tributes, in memory of her sister.
• Incisive Media donated £100.
• Elizabeth Allen donated £300.
• Pittentrial Recreation Hall Committee donated £100.
• Karen Mackay sent in £530 raised through the Donald Mackay Golf Competition.
• Paul Cree donated £100 in honour of Robert’s 30th birthday.
• Suzanne Rowan sent in £100 in memory of her husband on his 30th birthday.
• Suzanne Rowan took part in The 2.6 Challenge and raised £168.
• Jacqueline Hyland donated £300 to mark what would have been Robert’s 30th birthday.
• Brentford Football Club raised £1,275.
Allscott Health Sports & Social Club donated £520.
Christine Rushton sent in £210 raised by a friend and a Co-op dividend saving.
Doug Mutton, Danny Wise, Brett Kellett, and Chris Mugglestone raised £730 ahead of the Loch Ness Etape Cycle Race before the event’s cancellation.
Gary Savage sent in £110 in lieu of floral tributes in memory of his father.
Helen Davies took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £100.
Marjorie Scott donated £100.
Tracey Selwood raised £3,753.07.
Sandy Glassford took part in The 2.6 Challenge and raised £564.26.
Emma Dallimore raised £195 from her cake sale.
Peter Shonfield donated £150.
Gillian parker sent in £105 raised through the Eckington’s Got Talent event.
Rob Simpson donated £700.
Emily and Bryony raised £100 ahead of the Cotswold Way Challenge before the event’s cancellation.
Sue Fisher took part in The 2.6 Challenge and raised £126.
Rob Ashton forwarded £255 raised by Callum’s mum Louise, family and friends through holding a plant and garden event.
Patricia Berry took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £130.
Sonya Taylor donated £100.
Amanda Pilling sent in £615 raised at a charity event.
“Team Ross”; Charlotte Worsley, Nicholas Worsley, Esme Worsley, Claire Taylor, Erin Taylor, Marian Redfearn, David Redfearn, Kevin Taylor, Diane Taylor, took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £685.
Angela Tennent-Butler forwarded a donation of £2,500 on behalf of the National Federation of Demolition Control.
Jason Lee donated the weekly subs from their cancelled 8-a-side training sessions and raised £780.
• June Thomas sent in £1,540, including: £500 raised by the residents of William Street, Blackwood; £260 donated by the Turner family, in lieu of floral tributes in memory of Julian Turner; and £780 from Byffa Ystrad Mynach.
• Cardiff University Paediactric society raised £181.58.
• Cardiff University Paediactric society raised a further £241.35.
• Chou Chous Day Nursery took part in a Dancethon and raised £1,553.
Ruth Williams took part in the Grand Brighton Half Marathon and raised £640.18.
Megan Trigg took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £1,080.
Samantha Smitheram took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £115.
• Della Tudisca sent in a total of £2,822.26.
• Olivia, Victoria, Charlotte and Amy took part in The 2.6 Challenge and raised £1,648.96.
• Stephen Mann raised £3,634.80 from a head shave.
• Michelle Stevenson raised £202.
• Vicky Christian donated £100.
• Laxey AFC held a junior football event and raised £500.
Ken Waight sent in £690.50, including: £300 representing donations received in lieu of floral tributes in memory of Richard’s grandad, Eric; and £390.50 raised through a golf weekend and football competition.
Kathryn Walker sent in £220 raised through The Crown Green Bowls Tournament.
Elaine Ward forwarded donations totalling £350: £300 from Eric Beach; and £50 from Dronfield 41 Club.
• Marie Watson forwarded £485 donated in lieu of floral tributes in memory of her father (George’s Grandfather), Terry McGahey: £315 was given to Julie (Terry’s wife), by her work colleagues at the ILC Rolls Royce; and £170 was donated by family and friends.
• Littleover Community School raised £1,126.
• Alistair Last cycled 16km every 4 hours for 48 hours and raised £1,104.
• Simon Wells raised £1,030 from the 2020 virtual CRY Heart of London Bridges Walk
Melissa Briers sent in £1,450 representing donations in lieu of floral tributes in memory of her partner.
• Andrew Ockwell sent in £1,025 raised at Putney Cricket Club.
• Sebastian Kidson sent in £120 raised through a charity game at Putney Cricket Club.
• Ann, Christine, Sheila, Mary, Ruth, Adrian, Teddy, Florence, Keith, Lucas and Emily took part in the 2020 CRY Virtual
Challenge and The 2.6 Challenge and raised a combined total of £1,228.
• The Heartfelt Group donated £570:
“Vicky Keeling from Bodyshop at home and Sarah Louise Gail from Partylite hosted a Christmas online event and raised a massive £250. Myra Gregory had a recent family bereavement and through the sale of items and money in lieu of flowers for John Bishop, has donated £260 in memory of her son, Stephen Gregory. Chris Abram has been busy knitting Christmas decorations which have raised £60. This gives us a grand total of £570 for our screening fund. We look forward to next year and the hope of getting back to normal with screenings running again.”
Sue Williams took part in The 2.6 Challenge and raised £301.20.
Linda Birr-Pixton sent in £162.23 representing donation received in lieu of flowers in memory of Lee’s grandmother, Beryl Wilson.
William Barker took part in a sponsored shave and raised £160.
Tracy and David Yendall took part in a sponsored walk and raised £600.
The League of Friends of Alberfeldy Community Hospital donated £2,500.
• Air Products Stoke Team took part in the annual Air Products CHASE FY20 Scheme and raised £1,620.
• Team Akers took part in the 2.6 Challenge and raised £270.26.
• Anita, Steve, Joanne, Jennifer and Billy took part in the 2020 CRY Virtual Challenge and raised £331.
• Anna and Suzie climbed Mount Kilimanjaro and raised £2,644.78.
• APC Cardiovascular Ltd donated £250.
• Nicola Barwick and her son Luke took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £1,335 in memory of Liam.
• Biddulph High School raised £857.
• Bromwell Smith & Co donated £500.
• The Castle School Year 10 Balmoral students raised £307.90 from refreshemts, a penalty shoot out and a sponsored cycle.
• The Castle School Year 10 students raised £800.79 through providing refreshments, a Smartie tube collection and car washes.
• Charity Car (CarTakeBack) sent in £138.
• Leslie Cook donated £100.
• Amelie Cooper took part in the 2.6 Challenge and raised £298.
• Michele Crisp at Didlaw Ltd sent in £100.
• John Cumming donated £100.
• Natalie Daniel raised £150 ahead of a charity fight night before the event’s cancellation.
• Will Dennis took part in the 2.6 Challenge and raised £250.
• Ailsa Dollard raised £145 in lieu of birthday gifts.
• Brian Evans donated £383.
• Exxon Mobil Chemical Ltd donated £250.
• Neil Feline organised a charity football match and raised £735.
• Winifred Fell donated £100.
• James Fletcher completed the Scottish Prone Paddleboard Endurance Challenge and raised £2,576.91.
• Victoria Flinn organised a fundraising event and raised £100.
• Francis and Eric Ford Charity Trust donated £1,000.
• Zoe Groocock raised £113 through the sale of her handmade jewellery, key rings and coasters.
• G & W/UK & Europe Region donated £1,000.
• The pupils of Hampton School organised various fundraising events and raised £8,505.11.
• The Hospital Saturday Fund donated £2,000.
• David Hughes took part in The 65 Challenge and raised £1,068.
• Hull University Amateur Boxing Club took part in a 24 Hour Skipathon and raised £455.
• Aled Jones-David organised the TROTS VEDAY750 Challenge and raised £1,441.
• Katie, Rosie, Andrew, Sophie, Rachel, Emily, Anna, Findlay and Amy took part in the 2.6 Challenge and raised £310.
• Kulbir and Luke raised £637.79 from a sponsored hair cut.
• Stuart Lammin took part in the 2.6 Challenge and raised £260.
• Tony Lilley donated £200.
• Emery Little took part in various fundraising challenges as part of their Project 21 campaign and raised a further £1,473.45.
• The Lodge of Upright Intentions donated £920.
• James Lonwell donated £200.
• Luncarty Primary School raised £133.73 through their Healthy Tuck Shop.
• Stuart Macaulay took part in the 2.6 Challenge and raised £290.
• Lydia Mattu climbed Mount Kilimanjaro and raised £181.50.
• Lauren Meldram took part in a charity fight night and raised £1,707.
• The Michael and Anna Wix Charitable Trust donated £200.
• Mike, Dave, Stephen, Bryan, Vernon and Roger took part in the 2.6 Challenge and raised £448.40.
• Millennium Care UK raised £285 in memory of all victims of young sudden cardiac death.
• Sally Milner donated £100.
• Mike Morley-Fletcher sent in £2,500 raised through holding Theatrical Evenings.
• Robert Neve donated £100.
• Kate Newland donated £400.
• Albert Nwahba took part in the Hereford Half Marathon and raised £1,416.
• Tanya Nyatanga donated £100.
• Old Berkhamstedian Lodge (L4903) donated £200.
• Paul, Gwen, Katrina, Maria, Abbie, Andy, Georgina and Liam at Smithers, took part in a skydive and raised £130.
• Virginia Phillips cycled 300 miles and raised £200.
• Eva Pitulia at Choice of Scandanavia donated £325.
• RenaissanceRe donated £2,000.
• Jean Smith ran from Leyland to Walton Le Dale and raised £220.
• Knights of St Columba Council 401, Chingford donated £200.
• Justin Sullivan and the Autodesk Team at In 2 Events donated £500.
• Sue and Phil Threlfall sent in £1,000.
• TK Maxx Foundation donated £500.
• TK Maxx UK Foundation donated £500.
• Topnotch NCS took part in several fundraising events and raised £275.
• James Topping took part in Fight for a Cause IV and raised £407.25.
• Team Trinity took part in the 2.6 Challenge and raised £310.20.
• Jennie Turner donated £451 raised by her husband through taking part in a marathon challenge.
• University of Lincoln Student’s Union took part in the 2.6 Challenge and raised £885.43.
• Waitrose, Portishead sent in £333 raised through their Community Matters scheme.
• Lisa and Tim Ward took part in the 2.6 Challenge and raised £168.
• Susan Watts took part in the 2.6 Challenge and raised £1,184.26.
• Jane and Mark Wells took part in the 2020 virtual CRY Heart of London Bridges Walk and raised £200.
• Nicola Whitbread Jordan sold her mum’s settee and raised £130. Nicola’s mum, Mollie, was a big supporter of CRY before her death 2 years ago.
• Kevin Williams took part in the Dronfield 10k and raised £165.
• Mattioli Woods forwarded a donation of £100 on behalf of Nartaiji Hundal.
• Nicola Wright took part in the 12 A Week Challenge and raised £240.
• York House School, Year 4 raised £665.45.
If you would like to write a tribute in memory of a CRY supporter, please contact Tom (tom@c-r-y.org.uk) for more information.
the CRY screenings and other events. In the CRY office it was well understood that a screening at Rory’s Return was going to be special, and CRY staff were going to be well looked after. We had music, games, lovely food, and everything was done to try and make the young people attending feel relaxed.
I was astounded to learn Chris had diabetes. In watching him work it was hard to believe he had the condition as he was always so full of energy.
I am very sad to report that Chris Embling passed away on December 1st 2020. He had been a fantastic supporter with CRY, running screenings and raising over £67,000.
Chris had been in hospital for around four weeks with COVID-19. He had seemed to recover from the worst of this, had been declared COVID free, and had been discharged. He then spent a few days at home before being readmitted to hospital, and passing away about a week later. Chris’s death came as a big shock to everyone that knew him within CRY, and our thoughts are with his wife Anne, daughter Francesca, and their many friends.
As a CRY Representative, I was introduced to Chris in August 2015 when the family were trying to establish the real reason for his son Rory’s tragic death. We hoped I may be able to help.
Chris and I became good friends. He was a proud Yorkshireman, and first and always, a committed family man. I learned he would do anything to support and protect his family, and that included the memory of Rory. He set up The Rory James Embling Foundation, and this funded all of the work Chris undertook for CRY.
Chris was inspired to build the pub in the family garden, name it “Rory’s Return”, and this became the centre for
I know the screenings at Rory’s Return saved lives. One young man that had been identified at risk at a screening turned up about six months later to see Chris, to show him the scar where his ICD had been implanted. Without this he could have died. Screenings also allowed many young people to go about their lives in the knowledge they did not have a ca rdiac condition, and all of this is a tremendous legacy for Chris.
Chris developed his contacts with local schools, businesses and various sporting bodies, raising the profile of CRY throughout Yorkshire. Organising all the events were not for Chris’s glorification, but a genuine desire to honour Rory’s memory and promote CRY. Chris’s team also ran events in conjunction with, and promoted, other worthwhile local charities. Details are in earlier Updates.
It must be remembered that none of the things Chris achieved would have been possible without the amazing support from his family and friends.
Chris’s light has gone out far too early. I know he had so many other things he wanted to do, and he will be greatly missed in the community. One of his good friends John Duncan said we had lost one in a million and I would echo that. In the CRY office there is a great sadness about Chris’s passing, but most of all, he will be missed by his family and friends. It is good to know they will be a support to Anne and Francesca at this tragic time.
Thinking back to when Chris and I met, it was to try and establish what had really caused Rory’s death. At the moment we are waiting for the next step in our understanding of genetics, and developments in testing, but we still hope to find answers.
Due to COVID restrictions, it was very sad so few of us were able to attend Chris’s funeral, but we hope in the summer we can all meet up to really celebrate his life.
It is an honour to write about Chris. I have lost a close friend, but will cherish the memories I have of working with such a dedicated man.
Hello everyone, we are Anne and Francesca Embling. First, we would like to thank Jeff Markham so very much for being so kind as to write the article you may have just read about our beloved husband and father, Chris, whom we so tragically lost on the 1st December 2020.
We cannot believe that he is still not here with us, keeping us going and supporting us every step of the way. It is so incredibly difficult to put into words how much Chris meant to us both and just how desperately we are going to miss him every single minute of every single day.
Six and a half years ago, on a beautiful spring day in May 2014, our seemingly fit and healthy 26-year-old son and brother, Rory, set out to attend a sporting event and never arrived. He suffered a heart arrhythmia whilst travelling as a passenger in a car and tragically passed away. I know that you will all totally understand the devastating effects this had on our lives. How could a healthy young man who we had bid farewell to less than two hours earlier be fine one minute and gone the next?
For a very long time we were unable to function as normal human beings and the road we travelled was very dark and very difficult. Chris was very grateful to Jeff for serving as his unofficial counsellor during this time and through this Jeff has become a very dear friend to us all.
Rory always had dreams of running his own sports bar with his best mate, Dan Mills, so Chris decided that he would like to build one in the garden of our and Rory’s family home as a tribute and memorial to Rory. Chris named the bar Rory’s Return. In the summer of 2015, we held a memorial event at Rory’s Return to honour and celebrate Rory’s life to which friends and family were invited. It was after this event that Chris realised that we could try to do something positive with our lives after the loss of our dear son and brother. That we could attempt to raise funds to prevent what happened to Rory and the devastating effects that his loss had on us, his family, happening to other young people and their families. As a result of this realisation, we became affiliated to CRY and raised funds, in many and varied ways, to provide heart screenings for young people.
Chris was always the driving force behind our fundraising. He would come up with a yearly plan each January and aimed to have at least one event each month to raise funds and awareness and to keep Rory’s memory alive.
Chris was an incredibly determined man. If he set his mind to something, he would make it happen. He was very persuasive in achieving support for Rory’s Foundation. He was an excellent public speaker, and he made many wonderful connections at schools, sports clubs, businesses and other associations who were all extremely willing to do anything they could to help our cause.
Chris was looking forward to the fact that 2020 would see the 9th and 10th heart screenings funded by Rory’s Foundation which would see the 1,000th young heart screened in Rory’s memory. Sadly, because of the current situation we all find ourselves in, this was not to be. We dearly hope that at some time in the future, when society allows it and with the help and support of those we like to refer to as the Friends of Rory’s Return, we will be able to fulfil Chris’s wishes in this.
Chris was always greatly appreciative of the help and support which we so willingly received in our fundraising efforts from friends and family. People have always been so ready to provide a helping hand whenever needed from the sale of raffle tickets, providing and serving food, to jumping out of aeroplanes, going on 100 bike rides, hosting annual quizzes, and running marathons to everything in between. Chris so loved all these people for the support they gave us with all his heart.
Chris had so much more to do and he had so many plans regarding both Rory’s Foundation and the time which we had left together. He wanted to see a bit more of the world before we got too old to do so. We had booked to visit Australia in October of this year. Something which he had always wanted to do and something now that will never be. We are not sure how we will go forward in our lives without Chris and the great strength and support he gave us both to carry on without Rory.
We are taking each day at a time and doing the very best that we can. We hope to find the strength to continue and to make both Chris and Rory proud of us. We are so grateful that we had Chris as a husband of 41 years and a father for a lifetime. We will love both him and Rory endlessly and carry them both in our hearts forever.
Between September and December CRY featured in 52 print articles, including 3 national articles and 8 magazine articles. CRY also featured in 97 online articles.
‘U16 FC walks from Binfield to Bondi’
Bracknell News
Coaches, players and families from Binfield Football Club collectively walked or ran the distance from Binfield to Bondi Beach in Australia and back (a distance of more than 21,000 miles) in support of CRY.
Published 18 November 2020
‘Thousands have missed the heart test that saved my son’ Daily Express
This article brought awareness to the issue of young sudden cardiac death and how many people will have missed out on heart screenings due to the COVID-19 pandemic.
Published 15 December 2020
‘Frankie goes extra mile for charity walk’ The Sentinel
7-year-old Frankie Hughes completed an 8 mile walk to support CRY and raise money in memory of her uncle, Dan Hughes.
Published 23 December 2020
‘Aintree Hospital worker, 39, dies suddenly as loved ones left “shocked beyond belief”’ Liverpool Echo, 17 September 2020
Bevin Whitehead died suddenly in August 2020, and his partner, Melissa, and family have been supporting CRY in his memory.
Read at https://bit.ly/39PV37x
‘Retired officer runs special marathon in honour of murdered Worthing policeman’
Worthing Herald, 15 October 2020
Former Met Police Sergeant Simon Stevens completed his virtual London Marathon run in memory of Sergeant Matt Ratana and chose to support two charities, including CRY.
Read at https://bit.ly/2Q0dNun
‘Chris Kirby aims to run 1,500 miles in aid of CRY’
Bournemouth Echo, 17 October 2020
Chris Kirby took on a 1,500-mile running challenge in 2020 to support CRY and mark the 10th year since the death of his best friend, Adam Pearmine.
Read at https://bit.ly/3trBk5S
For links to online, press, television and radio coverage related to CRY and young sudden cardiac death visit www.c-r-y.org.uk/inthemedia
By fundraising for CRY you will be helping to:
• subsidise CRY’s national cardiac screening programme
• fund CRY’s bereavement support programme to provide counselling and support to affected families
• support research into young sudden cardiac death (YSCD)
• develop the myheart Network to support young people living with cardiac conditions
• provide all CRY literature and information free of charge
• develop the CRY Centre for Cardiac Pathology (CRY CCP), and the CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology
The involvement of our fundraisers has been crucial to helping CRY raise awareness about YSCD.
Whether you are carrying out your own activity or taking part in an organised event such as the London Marathon or the Great North Run, remember that CRY will always support your effort with posters, sponsor forms and other resources.
If you would like to join our fundraisers, CRY also offers a range of fundraising challenge events, including parachute jumps, white water rafting and a selection of trekking and cycling events.
Visit www.c-r-y.org.uk/charityfundraising-challenge-events for more information or contact the CRY office for a fundraising ideas pack.
The urgency of CRY’s mission and the quality of our work has compelled many high-profile personalities to give their time to become CRY Patrons. For more information visit www.c-r-y.org.uk/about-us/patrons
Sir Ian Botham OBE Honorary President of CRY
“It is not just athletes who are at risk of these heart disorders – it can happen to anyone. The problem has been swept under the carpet for too long and there have been too many excuses. I am a parent and a grandparent and I want to know that my kids and grandkids will be screened as a matter of course. It’s the only way we can prevent these sudden deaths occurring.”
Rob Andrew MBE
Clive Clarke
Evans
• John Barrowman MBE
• Jack Clifford
• Jeremy Bates
• James Cracknell OBE
• Baroness Ilora Finlay
Michael Hoey
KSG
• John Inverdale
• Rob Key
McDowell MBE
MBE
Scott
• Simon Halliday
• Tom James MBE
• Gary Longwell
• Lee Mears
• Ben Brown
• Nick Easter
There are many different ways you can donate to CRY. Online and cheque donations are the most popular methods, and we also accept credit/debit card donations over the phone.
For further information please call the CRY office on 01737 363222 or visit www.c-r-y.org.uk/donations
All your help is greatly appreciated.
1. CRY Update magazine
Postal mailing of CRY’s regular (three issues a year) news and events magazine. Includes reports from the CRY CEO and Founder; supporters’ fundraising; articles about screening, myheart, research, pathology, raising awareness initiatives, massparticipation fundraising events; and much more.
2. CRY enewsletter
Monthly email newsletter; 3 emails per year with links to the online version of the Update magazine; plus occasional emails about major CRY events and initiatives.
• Pixie Lott
• Bill Neely
• Sir Steve Redgrave CBE
• Roger Taylor MBE
Townsend MBE
Walliams
•
• Jonny
• Kathryn Harries
• Pat Jennings
• Emily Maitlis
• Lawrence Okoye
• Vincent Regan
•
OBE
• Graeme
• Phil Packer
• Joe Root
• Professor Gaetano Thiene
• Andrew Triggs-Hodge MBE
• Alison Waters
• Matt Wells
• Andy
• Gregor
• Andrew Trimble
• David
• Sir Clive Woodward
OBE
If you would like to subscribe to – or unsubscribe from – either of these mailing lists, please let us know:
• Complete the online form; www.c-r-y.org.uk/subscribe
• Call the CRY office; 01737 363222
• Email the CRY office; cry@c-r-y.org.uk
When Cardiac Risk in the Young (CRY) was founded in 1995 it was the first organisation to draw attention to the range of conditions that can cause young sudden cardiac death (YSCD).
Every week in the UK at least 12 apparently fit and healthy young people die of undiagnosed heart conditions.
These conditions include hypertrophic cardiomyopathy (HCM) and other diseases of the heart muscle, as well as electrical heart disorders which can lead to sudden arrhythmic death syndrome (SADS).
CRY aims to reduce the frequency of YSCD through raising awareness amongst the general public and medical community, providing expert cardiac pathology, improving early diagnosis through screening, supporting young people diagnosed and funding research.
1 in 300 young people CRY tests will have a potentially lifethreatening heart condition.
CRY believes cardiac screening should be available to all young people aged between 14 and 35.
CRY also works to guide and support families and close friends affected by YSCD.
We provide information to explain what the coroner does, bereavement support, help with NHS referrals and advice on the procedures that usually follow a YSCD.
In 80% of cases of young sudden cardiac death there are no prior
We are very proud that over 80p in every £1 we spend goes into supporting CRY’s key aims.
Without the fantastic support we receive this wouldn’t be possible.
symptoms of a heart defect.
CRY publishes a range of medical information written by leading cardiologists that is easy to understand and made available to the public free of charge.
For detailed information about cardiac conditions and CRY’s range of literature visit www.c-r-y.org.uk/ medical-information
Due to the anticipated impact of COVID-19 on fundraising in 2020/2021 CRY reduced the number of research fellowship grants awarded.
CRY is grateful for grants or donations from trusts and foundations. We would like to thank the following for the generous support they have given us:
