Deputy Editor
Tom West Newsletter Editor
As Deputy Editor of the CRY Update it is my responsibility to put together this newsletter, and 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
Rebecca Zouvani Fundraising Manager
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 reserve 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.
CRY Online
Brighton Marathon 2018
CRY Screening Report
Alison’s Column
CRY Centre for Cardiac Pathology (CRY CCP) Report
Research News
EuroPrevent 2018
Virgin Money London Marathon 2018
Our Fundraisers
Raising Awareness in the Media Report
Fundraising Events 2018
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 runner Alastair Pickering at the Virgin Money London Marathon 2018. Page 28.
2. The Hen Party for Meghan Markle event in memory of Matthew Dewhirst. Page 42.
3. CRY Research Fellow Dr Chris Miles with Professor Sanjay Sharma at the 2018 EuroPrevent conference. Page 22.
4. A CRY screening at Kings Langley School in memory of Dale Tennent-Butler. Page 17.
5. Heather Reid with CRY Patron Joe Root at the Strictly Dancing for CRY event in memory of Alexandra Reid. Page 63.
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 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.
6. Richard and Donna Fell at the Masonic Lodge in Hull where they gave a talk to support CRY in memory of their son, Josh. Page 45.
7. CRY was the sleeve sponsor for Stoke City FC at a Premier League game against Tottenham Hotspur this April. Page 10.
8. Labour Leader Jeremy Corbyn pledging to support CRY with Abby Lang. Page 11.
9. CRY runners at the Brighton Marathon 2018. Page 16.
10. CRY Representative Paul Daniels with his daughter, Frances, and Kent Cricket, who have
11. The 2018 Four Trigs event in memory of Jonathan Hayman. Page 48.
12. CRY Patron Bill Neely taking part in the Virgin Money London Marathon 2018. Page 24.
13. Gordon Reboul taking part in a Kilimanjaro trek in memory of
red.
to the loss of one of the kindest, most big-hearted people I have ever had the good fortune to love, see grow up, and look up to since my early childhood. But I didn’t become involved in the myheart network until 2011/2012, by which time I had an S-ICD and wasn’t far off getting a pacemaker too.
I had an incredibly long road to getting a diagnosis, having started years before my relative passed away. Sadly, each time I had symptoms, I saw a doctor who dismissed me based on my age, gender and lack of high volume sporting activity (I was sporty but not a sportsperson at that time!). Even after we knew of the condition, it took two tests to get
a lot has happened, making me appreciate my life and the chances I have been given more so than before.
I delayed getting involved with CRY or the myheart network, and a feeling that I didn’t have enough reason to do so – or that my voice wasn’t important enough to be heard.
I’m glad I took the step eventually, because most, if not all, the eclectic, talented individuals I’ve met have left a positive impression or mark and are genuinely fun to be around. They’re people who ‘get it’ – no explanation needed, no judgement. They have a slightly more robust ‘just go for it’ attitude to life than perhaps cardiologists would always like us to have; a shared sense of humour that others outside of the group may not understand; and Dr Michael Papadakis and the cardiac nurses are always great to have at meetings.
My hope is that in the future, members of the myheart network will collectively have a powerful voice, which can help others through the network and support CRY’s larger initiatives – change that is based on real need and lived
all’ approach. We are a key part of the jigsaw and most members have been through drastic changes in their lives, including career changes because of their heart condition, but these are things that aren’t widely recognised in the public domain.
Since being involved I have raised money for CRY and the myheart network, from undertaking an open water swim (‘slight’ hiccup but a solid attempt), to a nerve-wracking but exhilarating 100m abseil, and the CRY Heart of London Bridges Walks. Along with several other myheart members, including (but not limited to) Jess, Joseph, Tim, Zenia, Emma, Rachael and Chris, I have been fortunate enough to attend the annual CRY Parliamentary Reception.
Behind the scenes, I have also supported the myheart coordinators with pieces of admin work, one of which I hope has helped CRY reach young adults via cardiac units at a time where they may feel particularly isolated (especially if ‘stuck’ on wards with support is not designed for younger people in general within cardiac services).
I am grateful to be a representative for myheart and CRY, and look forward to continuing to support the charity however best I can, despite nearly being ‘too old’ to attend any meetings!
Dr Steven Cox CRY Chief Executive
@Drstevenjcox
drstevenjcox
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 January to April, as well as information about some of CRY’s events in this period.
CRY Consultant Cardiologist Professor Sanjay Sharma had an opportunity to share his expertise in sports cardiology when he went to give a presentation at the British Rowing Sports Science & Medical Conference in January.
Professor Sharma discussed different cardiac conditions and what can cause a sudden cardiac death, as well as
“Exercise – nobody will argue in this room – is great for the cardiovascular system,” Professor Sharma began. “We know that people who exercise regularly have a
likely to become diabetic. By controlling all of these risk factors for coronary artery disease people who exercise regularly reduce the risk of a heart attack by about 50%, so everyone knows that exercise is good for you.”
by M. Tenesescue, examining the impact that jogging can have on the heart. “In 2004, Tenesescue looked at 44,500 professional individuals and he followed them up for a total of nearly 500,000 person years. He showed that if you did nothing at all vs. if you jogged for just an hour a week, the jogger reduced risk of a heart attack by 42%.”
Another example Professor Sharma discussed was Tour de France athletes. These cyclists, for the heavy volume of intense training they endure, “still outlive most of us, effect on the cardiovascular system.”
As critical as it is for us to raise awareness about young sudden cardiac death, it’s also important to ensure that people are not deterred by deaths that are triggered during exertion due to an underlying condition and remain active.
January 30
Kenny and Maralyn Bowen have been supporting CRY since the tragic sudden death of their young son, Ian, due to Wolff-Parkinson-White Syndrome in 1996.
In an interview with Radio Zetland, Kenny explained that could seek counselling from Founder Alison Cox: “The
day I came home and Maralyn had been in touch with CRY I could see a change straight away. She said, ‘I’ve spoken to someone that knows what we feel like.’ And I said, ‘well, how can you do that?! Who knows what we feel like?’ And she said, ‘no, it’s Alison Cox. She’s brilliant and I’m going to phone her again.’
Maralyn felt she had been helped so much that she wanted to do something for CRY and was very surprised then signed up for the CRY counselling course.
“I wanted to give something back to CRY,” Maralyn said. “I did telephone counselling, spoke to other mothers that had lost a child, and I did that for 10 years.”
Meanwhile, Kenny got involved by writing to trusts, appealing for donations to support CRY with handwritten letters.
“I wrote to the 12 [Alison] had given me and then I went to the library and found a book with 2,000 in, so I had them to write to,” Kenny said. “I thought after about two or three months, with no cheques, nothing, ‘this is a waste of money’. But I kept going and got a £5,000 cheque and I thought, ‘this is good. This is smashing!’
“I sent that down to Alison and then they started coming. And, of course, you like to build up on it, don’t you? Then we got one from a group from Leathersellers’ [Company Charitable Fund] and they were giving us £33,000, professor gave us £20,000.
“People ask me, ‘why do you write letters, Kenny? Why don’t you do it on the computer and copy it off?’ And what I say is, ‘if I send you a letter and I write it, I think at least you’ll send me a letter back saying ‘we’re not giving you nought, but thank you for taking the effort.’”
Kenny added that one trust didn’t respond with money, but sent back 20 printed copies of his letter; they thought that they could at least save him some time. But that didn’t stop Kenny writing everything by hand!
Now, over 3,000 letters later, Kenny has raised about £545,000 for CRY.
Kenny and Maralyn said that they feel lucky to have found out why their son died, so they haven’t had to live with the confusion that other families can have who do not receive a clear diagnosis. Because these conditions are often genetic it is vital other family members are screened if necessary.
Their amazing efforts have supported many people and helped to save young lives.
Chris Williams and Max Thorpe were taking part in the 3,000-mile Talisker Whisky Atlantic Challenge three days before Christmas. They were on record-breaking pace, rowing 80 miles a day and leading the pairs’ race.
Then the weather changed. They told their story to The Times of Tunbridge Wells.
After high winds for a few days, Chris and Max endured waves 15 metres tall and Force 9 conditions, just below a hurricane at Force 10. On the day of their rescue at were told they’d be picked up at 3am. But it wasn’t until 4am that someone found them and they faced the task of getting onto a 250-metre-long oil tanker, smashing into their boat in the horrendous conditions. People on the tanker threw ropes over the side for Chris and Max to grab onto, except the strong waves and darkness made it a real challenge.
“Max managed to cling on to the rope but I was really struggling, it was incredibly hard to hold on,” Chris said. “I was biting the rope to keep hold and ripped a couple of teeth out of my mouth. It was one of those incredible experiences. It’s something for us to tell our kids. We will always cherish the memory. We are better for having had it. It’s been great to come back and relive it because we didn’t do that on the tanker. We just wanted to be back home. We were trying to move forward with as much positivity as possible.”
It’s a truly remarkable story, both Chris’s and Max’s efforts to try and raise awareness and funds for CRY, and the great courage they showed that helped them survive. We thank them for all they did in support of CRY.
February Dr Gemma Parry-Williams interview with BBC Radio
Lancashire
February 3
ECGs are simple. They only take approximately 10
I was interviewed by VICE for an article on undiagnosed cardiac conditions in young people, which gave me a valuable opportunity to share the shocking statistics surrounding young sudden cardiac death and highlight CRY’s work.
minutes and they can save many lives. CRY wants all young people to have the chance to be screened, to prevent tragedies and provide peace of mind for thousands of young people and their families every year.
Dr Gemma Parry-Williams was interviewed by BBC Radio Lancashire where she explained the screening process and highlighted why it’s so easy for everyone to take part.
complete a health questionnaire,” Dr Parry-Williams said. “They will answer questions about any symptoms they might have and they’ll tell us about any past medical history that might be relevant.
“Probably most importantly, they’ll tell us about any history in their family of anybody dying suddenly or unexpectedly at a young age, which might suggest to us that there may be an underlying condition running through their family, which often these conditions do.
“Subsequently to that they will undertake a 12-lead ECG, which is an electrical tracing of the heart and is a very sensitive test when picking up some of these conditions that we’re looking for. Once they’ve done that, they will then come to see me, I will review their questionnaire, go through anything they’ve written on the questionnaire that’s relevant and get further details, and then examine the ECG, the electrocardiogram.”
Dr Parry-Williams also advised young people to stay active: “I’d say probably the most important thing is recommended exercise is 150 minutes a week or 30 minutes a day of moderate intensity exercise, which is what the World Health Organisation recommends.”
Everyone needs to know that one in 300 young people will have a potentially life-threatening cardiac condition and 12 young people die every week in the UK from undiagnosed cardiac conditions.
I was also able to discuss how random the nature of these deaths can be, which is something that people don’t always realise about cardiac issues in young people.
Passing out during exercise, falling and not putting your hands out, or experiencing extreme chest pains, those condition. And if there has been a family history of young sudden cardiac death, then the whole family should be referred for tests because these conditions are often genetic.
These deaths are often not spoken or known about – but they’re starting to be. It’s so crucial that we continue to do all we can to raise awareness of these conditions and the need for all young people to be screened, and this interview was a small way to reach another audience and play a part in this.
To read the article in full, go to: https://bit.ly/2qfJjVe.
The spring national myheart meeting was held at Friends House, Euston, with 18 young people aged between 14 and 35 registered to attend.
members.
Nurse Amanda Potterton facilitated the introductory session followed by a session with guest speaker, Sue
research led by Professor Sanjay Sharma. As screening and research continues to work together hand in hand, we will continue to take great strides to preventing young sudden cardiac death.
Thank you to everyone for all you do to raise funds and awareness to make this possible. If you would like to book into a screening, please visit testmyheart.org.uk.
Jones, former Pacing and ICD Service Manager at St George’s Hospital, London.
After lunch, CRY’s myheart cardiologist Dr Michael Papadakis (above) offered the opportunity for those attending to informally discuss any of their medical queries.
CRY has now screened over 152,000 young people! Reaching 150,000 is such an incredible milestone for us, one that comes as a result of so much hard work and dedication from our staff and all our supporters raising funds to back the charity and pay for screenings all around the country.
We began screening young people over 20 years ago and I am so proud that we are now testing around 27,000 young people annually and have reached the staggering landmark of 150,000 in total.
Our world-renowned screening programme, based at St George’s in London, is also the hub of our international
I joined CRY doctors Dr Chris Miles, Dr Harshil Dhutia, Dr Michael Papadakis, and Dr Aneil Malhotra and Professor Sharma – who were both organisers of the event –to attend the British Sport Symposium at Wembley Stadium. It was a privilege to be at the event and most importantly give a presentation to highlight why screening is so essential for all young people.
incidence of sudden cardiac death in young footballers and how screening can be used to prevent it. At grass roots level in particular, where many young players sadly don’t have the medical support and opportunities for screening, cardiac conditions can go unnoticed.
I pointed out the consistent increase there has been year by year for CRY’s screening programme, jumping from less than 10,000 young people screened in 2011-12 to
CRY is on pace for yet another record in 2017-18 as we look to surpass screening 30,000 young people in a year
This kind of increase in such a short amount of time
challenge – professional athletes and teams are far more fortunate with the care they receive in this regard 2018.
Kent Cricket CEO Ben Green said: “We are delighted to help CRY raise funds and awareness about the valuable work they do. Members of our men’s squad have previously undetected conditions.”
We are hugely appreciative to have been invited to become involved with this fundraising partnership over the coming season. This is also a fantastic opportunity to raise awareness with those who support the club, as well as the young players coming through at grass roots.
is tremendous, and shows how much our screening programme is growing alongside everyone’s efforts to raise funds and awareness.
March
CRY has received incredible support in numerous areas in 2018 so far, and that continued through the help of Kent Cricket, who have been working with CRY Representative Paul Daniels in memory of his son, Ben.
club charity for 2018, meaning all funds raised through the club’s support will fund cardiac screenings for young cricketers playing the sport at a grassroots level in Kent.
Getting grassroots level athletes screened can be a
By working together with Kent Cricket we will be able to identify more young people who are potentially at risk, as well as fund important research and continue providing expert support to families following a tragedy.
April 3
CRY Representative Paul Daniels was interviewed to discuss what it’s like to deal with grief as a
with the loss of a child. Paul lost his son, Ben, when he was just 15 years old.
“What I want to say is grief is no different whether you’re a man or a woman, whether you’re a mum or a dad. The grief is still there and it’s how it manifests itself and how you’re allowed to let it out and how people treat you as a consequence of whether you’re a dad or a mum.
“My experience was that I wouldn’t say that it was skewed towards my wife or myself; it was something that was a function of how I personally approached it.
And how I personally approached it was where I did the typical dad thing, where I buried myself in the biggest project that I had in my life which was to bury my son, and then emerged from the other side wondering where my support network was in comparison to a mother…”
“I can honestly say at the time I didn’t really,” Paul said in response to host Nihal Arthanayake asking how he processed his grief at the time of Ben’s death. “I haven’t read up a lot on this, but I have spoken to other dads and I realise that what I did do was typical of what other dads do. There’s another chap I met recently who lost his son to a sudden cardiac death a few months back and his name is Noel. He did exactly what I did and he did exactly what a lot of other dads do: they make themselves busy, keep themselves occupied…”
“If you think about what our role is [as dads], I’m quite sure that – for me, and it might be the same for Paul [Barnes, who also lost his son and took part in the a dad to a son you had but don’t have anymore.
“As a father, you want to be that role model, you want to be that person who leads your son onto the right path in life. Then, when he’s not there, you still want to be that person who provides that right path, so being strong and being able to hold everyone else and help them to manage their grief is an important role for a dad I think, or rather should I say the person who is the head of the family, because it could also be a mum, of course, who is the head of the family as well.”
It’s for these reasons that CRY produced our ‘A Father’s Grief following a young sudden cardiac death’ support booklet. With 10 personal stories from fathers who have suffered the tragic loss of a child due to young sudden cardiac death, its purpose is to reassure others that they aren’t alone and encourage them to share their grief.
https://bit.ly/2F4n0X0.
April 5
We were incredibly sad to learn that CRY Patron Ray Wilkins MBE died on April 4 2018.
He was a tremendous supporter of CRY and was a Patron for over a decade after taking on the role in 2007.
CRY Founder Alison Cox went on BBC Radio Surrey to express just how grateful we are for all he did to help us: “He was a tremendous asset to us. He was such a lovely man, so polite and modest. He had a great sense of humour and was always willing to help us, which is absolutely critical when you have a Patron because you hope that they will be wanting to talk about CRY when they meet people.
“Also, whenever we asked he would sign something and/ or send us something; his wife was always there ready to cooperate and be at the door and deliver everything that we asked for.
“He was just brilliant. He never made us feel awkward that we were asking for something and that’s tremendous – and is not always what happens with people as famous as Ray was.”
We will never forget everything Ray did for CRY.
Alison also appeared on BBC Radio Essex to talk about CRY Patron Pixie Lott (above, with Alison and students of St Thomas More school in 2014). Pixie has been involved with CRY for years now, ever since Amesbury School asked to record their own version of one of her songs which led to her wanting to get more involved. Alison recalled how Pixie’s relationship with CRY grew:
“[Pixie] was fascinated by [the school’s request] and she wanted to be a little bit more involved, so they invited her to the school when at the end of term celebrations there is a big marquee. They suggested if it could be kept secret, she could creep in and suddenly sing to the boys
and girls and then all could sing it together.’ I met her at the private lunch we were having together, and suddenly wondered how she would feel if I asked her to be a Patron. And I couldn’t believe it when she said yes!
“Not much later I got a Sunday morning call from her mum, Bev, saying, ‘Alison, I can’t believe what I’m looking at. It is the photograph of a friend of my daughter’s in your CRY magazine. She went to his funeral. I can’t believe that his family is being supported by CRY.’
“Then, about four years later, they got a message from the family of Pixie’s dance teacher, Matt, who was 32 and had just suddenly died when he was working at a concert in Germany. So, Pixie had suddenly gone from just wanting to help us because she felt it was a very important thing to do, to having two very good further reasons to become involved with CRY.
We hugely appreciate the considerable amount that Pixie has done over the years to help CRY raise awareness and funds.
and funds for screening events, attended the game and helped lead to more coverage of the event through the Daily Mail, BBC Midlands and ITV Central.
Thanks again to Top Eleven and Stoke City FC for their generosity, and for doing their bit to help us raise awareness of CRY.
This year, the EuroPrevent conference was hosted in Ljubljana, Slovenia. CRY was grateful to be included once again and join so many experts from around the world to discuss new research into the prevention of sudden cardiac death.
CRY myheart cardiologist Dr Michael Papadakis gave a fantastic presentation, “Apical HCM and mild phenotype HCM in athletes: Common and benign? Let them play?”, with certain cardiac conditions. Dr Papadakis discussed how different conditions and sports will vary in terms of the risk they pose.
Former CRY Research Fellow Dr Sabiha Gati gave an excellent presentation on weighing the balance between physiology and pathology in left ventricular hypertrabeculation in athletes.
Professor Sanjay Sharma took part in a panel on cardiac disease in women. The panel focused on the issue of research being disproportionately focused on men, and whether this is because women suffer from less of these conditions or because research is so heavily focused on men to begin with that we don’t have enough female data.
April 7
CRY received more fantastic support with raising awareness thanks to Top Eleven using their ‘Wear your Heart on your Sleeve’ campaign to give us their sleeve sponsorship on Stoke City’s shirts at a Premier League game against Tottenham Hotspur.
sleeve spot to another organisation in the Premier League, allowing CRY to be seen in front of a new, large audience.
The families of Daniel Hughes and Jordan Burndred, who have supported CRY through raising awareness
One standout moment from the conference was CRY Research Fellow Dr Chris Miles (right, with Professor Sharma) winning the Young Investigator of the Year award for his work studying ARVC in athletes, “Sudden death and competitive sport in
To read a full write-up of the conference, turn to page 22.
CRY was well represented by 99 runners in the Virgin Money London Marathon 2018. As the hottest London Marathon on record, we are so proud of all our runners for accomplishing this huge feat in support of CRY while enduring such challenging conditions.
A very special thank you to CRY Patron Bill Neely for running his 9th consecutive London Marathon for CRY in memory of Katrina Brown.
Finally, thank you to all of our supporters. We owe the success of the day to our grand cheerers who placed themselves strategically along the route to motivate our runners; our massage therapists, whose job it was to relieve their sore muscles; everyone who came to our reception in the Hilton hotel after the run; our stoic volunteers who were so generous with their time, ensuring that every part of the day ran smoothly; and, of course, our runners for completing such a tough challenge in support of CRY.
To read a full write-up of the day and see plenty of photos, turn to page 26.
As crucial as it is for CRY to raise awareness and support in communities all around the UK, we also need to seek the support of MPs to produce strong backing
in parliament as we work to further our screening programme.
Over the January to April period we made real progress in this area, with 15 MPs, including Labour Leader Jeremy Corbyn, signing our #MPSupport4CRY pledge thanks to the tireless campaigning efforts of Abby Lang, aged 17.
Tony Lloyd MP said to Rochdale News: “I am astonished to learn that 12 young people die per week in the United Kingdom from undiagnosed cardiac conditions. In total this means over 600 people die every year in such a way, someone in Rochdale.
“It is crucial that we raise awareness of these conditions and it is only right that we work to stop these deaths from happening.”
Emma Reynolds MP commented on her website: “I am proud to pledge my support for this amazing campaign to help raise awareness about Cardiac Risk in the Young.
“I was contacted by a constituent who had suffered the heartache of losing a child who had an undiagnosed heart condition and who is now championing awareness and promoting the screening of young people to try and identify previously unknown conditions.”
Increasing awareness of young sudden cardiac death through constituency MPs is vital if we are to make an impact on parliament to change their policy and make them listen to what is required to save young lives.
As part of the CRY Online segment we will include Facebook posts from Chief Executive Dr Steven Cox (found at drstevenjcox), providing thoughtful responses to news and events from the last few months.
Over the past 20-plus years we have had many debates with government advisors about why all young people should have the opportunity to have cardiac screening. At each of these meetings the latest research data is discussed.
We will present the latest research data, including papers which show why it is important for people to know if they have cardiac conditions. We will show why someone with long QT or Brugada syndrome needs to know which medicines/drugs should be avoided. We will present data to support the position that people with Arrhythmic Right Ventricular Cardiomyopathy (ARVC) should avoid strenuous
White need to have risk assessments and should be ablated when considered at risk.
Although there is compelling evidence for young people to know if they have an underlying cardiac condition, public health policymakers have always fallen back on the position Control
I recently read an article in The New England Journal of Medicine and was pleased to see there may be a move away from a reliance on RCTs in public health policy. Indeed, the way incidents of Sudden Infant Death Syndrome (SIDS) have been reduced and the way in which tobacco policy has evolved are examples of policy developing without RCTs.
The journal article highlights some of the problems with RCTs; how no data (including that obtained through an will enable us to learn from our actions. This is part of the policy.
I was pleased to see the comment at the end of the paper stressing the fundamental ethical problem of certain types of RCTs: “Screening research subjects must die to prove mortality reduction” (F. Grannis). This is the same for
cardiac screening in young people. RCTs are not ethical, as we would not consider screening someone and then withhold vital, potentially life-saving information from that person to see what happens over time, in essence to see if or when they die.
This quote from the end of the paper highlights what CRY is achieving through its research programme with Professor Sanjay Sharma: “There will always be an argument for more research and for better data, but waiting for more data is often an implicit decision not to act or to act on the basis of past practice rather than best available evidence. The clinical and public health action that have been derived openly and objectively and that enable us to say, ‘here’s what we recommend and why’” (Frieden, 2017).
As a society, we cannot accept that there will be 600 young sudden cardiac deaths every year when action can prevent these tragedies. CRY recommends all young people have the chance to have their hearts checked because screening will prevent young sudden cardiac deaths.
When the evidence supports action, to do nothing is simply wrong.
Of course, cardiac screening for relatives after a young sudden cardiac death is essential, but the objective must be to prevent the tragedy!
conditions I attended as a representative of CRY almost 15 years ago. The entire day was focused on the best way to clinically support families after a tragedy. Many of the issues we are still discussing today were being talked about then. The difference is that now we have powerful published research to endorse what was then agreed amongst the experts, establishing the need for families to be referred to specialists so they have the best possible care.
highlight why this is so important, but this research must not detract away from the key issue which has to be the prevention of young sudden cardiac deaths.
Most organisations in the UK do not currently advocate a position that all young people should have the opportunity to be screened, even though screening is now routine in elite sport and some professions. They support a position where
condition, before investigating other family members for a
potentially genetic condition.
However, this will usually be after a young sudden death or when a family member is found to have the condition, often in the later years of their life. This will then result in the younger family members being screened for the same condition; but the reality is the younger family members may have been unnecessarily putting their lives at risk for many years.
When we consider young sudden cardiac death is one of the most common causes of death in young people, affecting hundreds of young people and their families every year, the current state of play is simply unacceptable. More research which is focused on preventing tragedies needs to be done and this is why the work of CRY under the leadership of Professor Sharma is so important.
At the end of the conference I raised my hand and was given the chance to speak. I said, “but surely our goal must be to
Previously, the way in which deaths have been recorded makers referring to rates of deaths from YSCD incorrectly. This has had devastating consequences in terms of informing decision makers when considering vital policy such as the implementation of a screening programme for young people in the UK.
An example of this is the letter from the UK statistics authority to MPs to answer the question about the number of sudden cardiac deaths. This shows how many of the young people who die suddenly of cardiac conditions have their death incorrectly recorded – and crucially this data forms the basis of UK policy to prevent these tragedies. This breakthrough in CRY’s ongoing campaign to establish a national strategy to prevent young sudden cardiac deaths.
We believe that once this new code is fully implemented conditions are one of the most common causes of death in young people and that much more should be done by our government to prevent these tragedies.
elephant in the room that can’t be brushed under the carpet!
We recently saw one of the most important steps in our campaign to prevent young sudden cardiac deaths. For the QT (alongside long QT, Brugada syndrome and hypertrophic cardiomyopathy) are now being recognised by the World Health Organization (WHO).
The WHO has just released the ICD-11 code (International issues that CRY has been campaigning to address; that of the most common causes of young sudden cardiac deaths (YSCD).
This major milestone would not have happened without the incredible support of the thousands of families who support CRY throughout the country, enabling the CRY research team, led by Professor Sharma, to publish academic papers which have without question changed policy and practice, not just in the UK, but throughout the world.
This launch of the WHO code coincides with the 100th MP signing up to support CRY’s campaign for a national strategy to prevent young sudden cardiac death.
BC43.6 ARVC – Arrhythmogenic Ventricular Cardiomyopathy
BC65.1 – Brugada syndrome
BC65.2 – Short QT diagnostic tool for epidemiology, health management, and clinical purposes. This includes the analysis of the general health situation of population groups. It is used to monitor the incidence and prevalence of diseases and other health problems, providing a picture of the general health situation of countries and populations. The ICD is the foundation for identifying health trends and statistics worldwide, and contains around 55,000 unique codes for injuries, diseases and causes of death. It provides a common language that allows health professionals to share health information across the globe.”
Social media is a vital part of how CRY interacts 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 this new CRY Online segment, we’ll look back at the four-month 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.
One of CRY’s top Facebook posts for this period, shared by more than 700 people, was an announcement about the growth of our screening programme, which resulted in a recordbreaking total of over 300 screening days being held in 2017! From screening less than 8,000 people in 2011, just six years later we reached far we’ve come thanks to the efforts of supporters to keep raising funds for screenings.
A February post sharing CRY’s video “Beaten”, which has tallied more than 121,000 views on YouTube, also reached a vast audience on Facebook, receiving over 1,100 shares to appear on 211,000 people’s personal feeds. The video, showing how suddenly a young life can be lost, powerfully portrays CRY’s
message in just one minute.
On Instagram, one of our top posts from the period was, unsurprisingly, a photo of a group of CRY runners and supporters at the Virgin Money London Marathon 2018.
Through January to April 2018, CRY’s reach on Twitter was excellent. After recording 841,248 ‘impressions’ (the number of times a tweet is displayed on someone’s personal feed) in the same period last year, reaching 1,188,331 in 2018 is a sign of how awareness is increasing through social media.
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
A major highlight for CRY in April was our logo being featured on the sleeve of Stoke City FC’s shirt during a Premier League game against Tottenham Hotspur. Top Eleven generously gave up their spot to give CRY’s logo a chance to be seen in front of a huge audience.
As you can see from Stoke City sharing the word on Twitter, we were able to increase awareness for CRY and this exciting occasion even further through social media.
A standout moment from March was forming our new partnership club charity for 2018. This will help increase exposure for CRY with the club’s supporters and provide screening for more young people who could be at risk, while aiding our funding for research as well. The awareness raised through social media only
partnership will be throughout the year.
As always, our infographics continued to be a highly effective method of spreading awareness online as well. A video from February (Heart Month) was retweeted 131 times and reached close to 200,000 people.
We would like to say congratulations to the 15 CRY runners that took part in the Brighton Marathon on Sunday 15th April 2018. A huge thank you to everyone for their kind support and amazing fundraising efforts!
Thousands came down to the seaside to watch the runners take on the challenge of the marathon in good running conditions.
The constant cheering from all the supporters created a lively atmosphere and gave the runners a helpful boost around the course. This was especially the case towards the end of the route, where crowds cheered all the runners
The route saw the runners go from Preston Park down to the seafront to perform a large scenic loop, passing the vibrant Brighton Pier.
Once again, a huge thank you to the team for doing so well; we really appreciate all of their efforts and kind support. We would also like to say a huge thank you to
all of our supporters who came along, wearing their CRY T-shirts to cheer on the runners.
CRY runners:
George Pangborn (running in memory of Simon Pangborn) | James Hazell (running in memory of Paul Salem) | David Hutchings (running in memory of Luke Towers) | Luke Jones (running in memory of Annie Edwards) | Sam Lowe | Antony Ashton and Lloyd Ashton (running in memory of Carina Boddy) | Anthony Thompson (running in memory of Mike Scott)
Lloyd Jones (running in memory of Matthew Hughes)
Rob Ostler | Stephanie Hutchings | Jason Mitchell (running in memory of Jake Wood) | Ellie Deslow and Colin Deslow (running in memory of James Moorfoot)
Stephen Flight (running in memory of Benji Percival)
763 people were screened at our National Screening Centre at St George’s Hospital, London, funded in memory of Jack Thompson and Sara Pilkington, and by donations from the BGC charity day, Leathersellers’ Company Charitable Fund, The Steel Charitable Trust, The Stanley Grundy Foundation, The Aubrey OrchardLisle Charitable Trust and The Lawson Trust.
Sports screenings included: Newcastle Rugby Football League, Leeds Rhinos RFL, Salford Red Devils RFL, Middlesex County Cricket Club Academy, RFL
AFC Wimbledon, RFL (Doncaster), RFL (Dewsbury), Hull FC (RFL), Castleford and
(senior team), Bisham Abbey EIS, Wigan Warriors (RFL), Yorkshire County Cricket Club, Loughborough EIS, Derbyshire County Cricket Club, Bristol Championship Rugby, Leicestershire County Cricket Club, England Rugby U18s Counties, RFU U16s Wellington Festival, Glamorgan County Cricket Club, British Triathlon Academy, and Kent County Cricket Club. A total of 1,631 athletes were screened.
At 42 family memorial screenings 6,662 people were screened. These were held in memory of: Ben Daniels (Kent and Beckenham), Andrew Patterson (Bolton), Lewis Marsh (Basingstoke), Shane Stanley (Dorset), Daniel Hughes (Leicestershire and Derby), Emlyn Arthur Wibberley (London), Sam Standerwick
(Abergele, North Wales), Matthew Hesmondhalgh (Lancashire), Dean Mason (Carmarthenshire), Mike Clarke (Cheshire), Jack Thomas (Blackwood), Jordan Burndred (Stoke on Trent), Sam Wright (Derby), Harry Dubois (Knutsford and Salford), Ceri Palmer née Howells (Cheshire), David Moss (Stoke on Trent), George Watson (Derby), Dale TennentButler (Kings Langley), Ian Bowen and Leon Manners (North Yorkshire), Jenny Bucknell (Staines), Martyn Luckett (Devon), Tom Hardman (Manchester), Annie Edwards (Lewes), Stephen Allseybrook (Derby), Aaron Dixon (Cheshire and Worcestershire), Oliver Marsden (Devon), Neil Bradbury (Staffordshire), Nathan Butler (Newcastle under Lyme), Ben Hammond (Kent), Owen Morris (Carmarthenshire), Alex Brown (Walsall), Kyle Hancock (Hope Valley), Andrew Parr (Preston), Harry Faulkner (Berkhamsted), Jonathan Leigh (Pontefract), Jonathan Picker (Nottingham), Craig Lunt (Isle of Man), and Darren Shahlavi (Wilmslow).
1,715 young people were screened at 16 school screenings held at: Kingston Grammar School, Kingston; Cheltenham Ladies College, Cheltenham; Cranleigh School, Cranleigh; Canford School, Wimborne; Bryanston School, Dorset; Eton College, Eton; Felsted School, Dunmow; Taunton School, Taunton; Trent College, Long Eaton; Kings School, Worcester; Bishops Stortford College, Bishops
Knutsford Academy, Knutsford; Prince William School, Northamptonshire; Tudor Hall, Banbury; and Nottingham High School, Nottingham.
At two further screenings 280 people were screened. These were held at: Rift Accounting, Kent; and Moy Tír Na nÓg GAC, Antrim, Northern Ireland.
The basic test is an electrocardiogram (ECG) which is a simple noninvasive and painless test that examines the electrical activity within the heart.
Small stickers are placed at strategic points on the chest, arms and legs. Flexible leads (called electrodes) that extend from the ECG machine are then attached to these stickers. The electrical rhythm of the heart is recorded and printed out. This part of the process only takes two to three minutes to perform. The ECG printout is then reviewed by a doctor in conjunction with a personal and family history questionnaire.
If a more detailed image is needed (about 5–10% of individuals), an echocardiogram can be taken – this is similar to the ultrasound scan that is used for a pregnant woman to check the health of her baby. Soundwaves echo against various parts of the heart and they are recorded on a screen. This provides a detailed picture of the heart’s structure and how well it is functioning. This takes about 30 minutes to perform.
The screening programme is under the aegis of Professor Sanjay Sharma.
This year’s screening at Kings Langley School in memory of Dale has taken the total number of young people’s hearts tested past 1,000; 1,046 to date to be precise. We have held six screening events since 2012 at the school where Dale was a pupil. On the right is a photo of the CRY team, Dale’s mum and brother, and the 1,000th young person to be screened, Maddie Lang. As always, this event was well attended and the local families are very grateful for the screenings. We hope to continue to screen many more young people in the future. If we can save one family from the devastation of losing a child suddenly to SADS, then all the hard work is worthwhile.
The ancient role of the coroner was formally established in 1194 and incorporated wide-ranging duties and responsibilities that extended to various aspects of medieval life, especially those from which the Crown remuneration. The word coroner is taken from ‘Crown’.
It adapted cautiously over the centuries. However, in the repealed and the 1887 Coroners Act was introduced. particularly when investigating and recording violent, unnatural deaths in the community.
The next major step forward was when the Conservative party suggested the appointment of a Chief Coroner during a Parliamentary debate that received cross-party support when legislated for in 2009. However, the two wars that were fought in Afghanistan and Iraq, where many soldiers were considered to have been killed because they were without vital protective military vests, left the government vulnerable to repeated condemnation in the media due to the number of ‘deaths in action’ claiming they were ill other things – the alarming decision subsequently made to replace the autonomy of a Chief Coroner with a Minister’s Board chaired not by a coroner, but by the minister.
on having a Chief Coroner, with CRY and several other charities strongly objected to this compromise because of the risk it presented for political impartiality. We felt that free to act independently and the autonomy of the coroner’s role would be jeopardised. That is, the government was investigation when dealing with the military, and the true cause of death would be obfuscated.
The role of the Chief Coroner was designed to address the lack of leadership and varying standards of accountability and transparency that had been tolerated amongst coroners at that time, which so distressingly (and unnecessarily) exacerbated the suffering of many CRY families after their tragedy.
Having a Chief Coroner, it was thought, would provide the
much needed fairness and stability – not only when dealing with a controversial cause of death, but also dealing with those who wanted to appeal against the coroner’s verdict. The government’s idea of a Ministerial Board, chaired by a minister, was that he/she would be assisted by civil servants who would be delegated the tasks that the Chief Coroner would have been expected to have responsibility for.
This group would have been vulnerable to the insecurity of constant change, as ministers and their civil servants inevitably come and go. The reconstruction of the role, ‘to ensure judicial oversight, enforce national standards and improve accountability,’ would have become impossible to
CRY’s determined campaign began with an appeal to our families to support our ‘Coroners Postcard’ by constituents mailing as many Coroners Postcards as possible to their MP. Our postcard highlighted the appalling – but typical –contrast in experience of two different families in different parts of the country. An experience that in some areas was done with the utmost sensitivity by the coroner, and in others was managed insensitively with minimum consideration for the bereaved family – an experience that would never be forgotten by either family during their lifetime.
Jonathon Djanogly, the Minister of Justice, was an amiable MP but not, I thought, one who seemed to have much understanding of the impact of a young sudden, unaccountable death that required an inquest. We had an extensive exchange of correspondence and a heated meeting when we, alarmingly, found that we were unable to identify any common ground between us at all.
There was energetic disagreement at every level and I did not feel that Jonathon appreciated the importance to CRY families of not having a full and proper investigation into
suffering this would provoke.
The government optimistically seemed to assume that their amendments to the bill would proceed smoothly when they of the quangos’); and were unprepared for the vigorous opposition presented in the House of Lords when MPs voted overwhelmingly to remove the Chief Coroner’s post from this Bill.
They were unprepared for the disruption that those challenging it provoked. However, the rear guard action had been carefully prepared. The House of Lords’ opposition to the Bill was led by the indefatigable Baroness Ilora Finlay, who later became a CRY Patron. She totally understood
strategically analysed the cost of the role and successfully challenged the government’s claim that it would cost in excess of £10 million. Her considerable stamina and perseverance succeeded in achieving the goal we had been hoping for, enabling the role of Chief Coroner to be implemented.
had previously surrounded the role of the coroner quickly became a thing of the past.
CRY’s Jeff Markham sought Judge Thornton’s support for his own case in appealing to change the coroner’s verdict of the cause of death for his son, James, who died aged 21 in November 2001. This had previously been recorded as Unascertained – Natural James had died of long QT. By succeeding in this important challenge he was able to accurately record the correct cause of death for this genetic condition, alerting future generations of his family.*
His Honour Judge Mark Lucraft has recently succeeded Judge Thornton as Chief Coroner – but even though there is some concern that the support the Chief Coroner can provide is now more limited, we were elated to recently learn that the World Health Organisation (WHO) have just announced their recognition of the various causes of young sudden cardiac death. Prior to this crucial development the WHO limited its young sudden death causes to only acknowledging hypertrophic cardiomyopathy. For more information about ICD codes and their history, go to the WHO website here .
This is a hugely important development. It will not only impact on CRY being able to prove that the number of young sudden cardiac deaths is far higher than has – to date –
2013 following this protracted ‘battle,’ on so many levels, to establish the role of a Chief Coroner. Changes meant that the new concept of investigations would be introduced; and inquests used more widely.
September 2012 by Judge Peter Thornton QC. This began a new era dedicated to modernising the coroner’s role. Where previously a coroner could be either medically (doctor) or legally (solicitor) trained, new coroners had to have legal
his job when he retired to another member of his family.
was told that none was available. Modernisation led to openness and coroners soon had their own websites with requests for feedback. The tortuous protective secrecy that
This major milestone would not have happened without the incredible support we were given by the thousands of families who have supported CRY throughout the country, enabling the CRY research team, led by Professor Sharma, to publish academic papers which have unquestionably changed policy and practice not just in the UK, but throughout the world.
The launch of the new ICD code coincides with the 100th MP signing up to support CRY’s campaign for a national strategy to prevent young sudden cardiac death.
By Professor Mary Sheppard
Professor Mary Sheppard, Susanna Cooper, Khari Edwards,
The CRY Pathology laboratory is a national referral centre for the pathological investigation of young sudden cardiac death, with an established national database. We have consultant histopathologist Olena Dotsenko working with us parttime and a clinical research fellow, Joseph Westaby, training in cardiovascular pathology.
Khari Edwards and Susanna Cooper, our laboratory bio-scientists, are now very experienced in handling the cases referred to us. Both are very knowledgeable concerning the complex procedures we employ within the laboratory to examine the hearts sent to us from families affected by a sudden cardiac death.
We had 196 heart cases from January to April 2018. This is an
very good turnaround time for issuing a report to the coroner. We also obtained consent to retain tissues for research in 50% of the cases referred to us, which forms a valuable biobank for research into the causes of sudden cardiac death. We are also increasingly getting splenic tissue material in addition to hearts, with 83 in 2018, for genetic investigation of the sudden cardiac deaths (the molecular autopsy) which will be valuable for families in the future.
Professor Noel Woodford, forensic pathologist at the Royal Victoria Institute, Melbourne.
pathologist from Greece.
Marios Margaritis, a visiting cardiologist from Leicester doing a project on coronary artery dissection.
Yasid Yahya, a forensic pathologist from Malaysia.
Professor Robert Anderson, cardiac anatomist, a member of our department studying congenital cardiac anomalies which can cause sudden cardiac death.
Dr Angeliki Asamaki, a scientist doing research into pathophysiological mechanisms in arrhythmogenic cardiomyopathy and channelopathies such as Brugada syndrome.
CRY Research Fellow Dr Chris Miles who is studying arrhythmogenic cardiomyopathy and sudden adult death and has obtained a British Heart Foundation (BHF) PhD
fellowship.
Causes of death from January to April 2018
CRY Research Fellow Dr Gherardo Finocchiaro who is studying hypertrophic cardiomyopathy and idiopathic left ventricular hypertrophy.
Dr Michael Papadakis who is studying the incidence of SADS over time.
Dr Stathis Papatheodorou who is studying clinical follow up of SADS families.
Dr Belinda Grey from Australia who is studying sudden infant death.
• Joint meeting with Pathological Society of Great Britain and Ireland and the Royal Society of Medicine – Epigenetics –understanding disease and guiding therapies
• Keynote lecture: ‘Pathology of Inherited Cardiomyopathies’, Amsterdam Medical Centre –sudden cardiac death course
• Presentation of cases – inherited cardiac conditions meeting, St
George’s University, London (SGUL)
• Pathology Section of Royal College of Physicians of Ireland –36th annual symposium
• Talk on sudden cardiac death to forensic pathology group, SGUL
• Cardiac development lecture to Health Sciences, SGUL
• Translational cardiac pathology meeting
• Lecture on cardiac genetics, MSC Genetics, SGUL
• Senate at St George’s Medical School – The powers and responsibilities of senate and its membership
• European Heart Rhythm Association, Barcelona
• Lecture on sudden cardiac death autopsy practice at BHF headquarters, London
• Lecture on pathology of inherited cardiac disorders at European Human Genetics annual meeting
CRY supported vital research published this March in the Journal of the American College of Cardiology, entitled “The Diagnostic Yield of Brugada Syndrome After Sudden Death With Normal Autopsy” (Papdakis M, Papatheodorou E, Mellor G et al), raising the importance of all families going to specialist cardiology centres after a young sudden cardiac death.
The research was based at St George’s University, London, and evaluated 300 families who had been affected by sudden arrhythmic death syndrome (SADS) over a 10-year period. 911 relatives were monitored, with 22% of them being diagnosed with an inherited cardiac condition – the most common of which was Brugada syndrome, affecting 16% of all relatives.
The study revealed some other shocking statistics, as one of the lead authors, Dr Michael Papadakis, pointed out: “This study highlights the importance of comprehensively
study we showed that 97% of those relatives diagnosed with Brugada could have been missed if an Ajmaline test was not routinely carried out.”
Brugada syndrome causes a disruption to the heart’s normal rhythm. Most people have no symptoms at all, although some may experience blackouts or palpitations.
family is the sudden death of a young person.
CRY Consultant Cardiologist Professor Sanjay Sharma added: “This paper provides a blue print for how families should be assessed after a SADS death. Often a diagnosis can be very challenging, and you need as much information as possible to get an accurate picture of what has happened and the implications for the rest of the family. Testing families at a specialist centre results in more relatives receiving treatment and lifestyle advice which could potentially save their lives. And, at a time when everyone is concerned about how much this is costing the NHS it is important to be aware that referrals to specialist centres for families after a tragedy will not only help to protect young people, but it will also save money. Families will receive better emotional support, being treated by doctors who see families every day who have experienced these tragedies. We can also be sure that only the most necessary – but most clinically important – tests will be conducted.”
CRY Chief Executive Dr Steven Cox explains: “There’s little doubt that our Centre at St George’s is a global centre of excellence – where families will be seen quickly, have all tests done on the same day, and be seen together
as a family unit. But it’s unacceptable that there may be families in other parts of the UK who are not receiving the same reassurance or treatment, at a time when they are already grieving from the sudden death of a young son, daughter or sibling.
“This research reinforces our belief that following a SADS death, it is vital that the bereaved family is not only offered a series of tests including ECG, echo ultrasound, exercise tests, 24-hour monitoring and an Ajmaline test, but families also need to be seen by an expert in these conditions. Our research has shown if they are offered an ECG alone by their GP or cardiologist, this is simply not enough.”
Julie Donnelly’s 17-year-old son, Adam, died suddenly whilst on a family holiday. She added the following: “Had we not had the comprehensive testing described in this study after Adam’s death, I believe all of our lives could have been put at risk.
“In fact, my daughter, Sian, has since had an ICD implanted, which will essentially ‘shock’ her heart should it go into a lethal arrhythmia. No other family should have to go through the same devastating grief as we did –especially knowing there are tests and expert diagnosis available which can identify life-saving treatment or
This paper also received the support of Professor Sir Nilesh Samani, Medical Director at the British Heart Foundation (BHF), who said: “Cardiac screening the loved ones of SADS victims is a postcode lottery. Not every condition and ultimately this could mean the difference between life or death.
“Research like this shows how important it is to investigate an unexpected death. Knowledge is power – if family members can be given a diagnosis, we can treat and protect them from another tragedy.”
the level of men, or if they could even surpass and out run them in the future. While Dr Moholdt said that this is unlikely due to women having the disadvantage of a lower VO2 peak (maximum oxygen consumption), it’s an intriguing angle of this topic to consider in more depth.
A highlight of the event was CRY Research Fellow Dr Chris Miles winning the Young Investigator of the Year award for his work studying ARVC in athletes, “Sudden death and competitive sport in arrhythmogenic cardiomyopathy: A post-mortem study of young athletes.”
“I was deeply honoured to receive the Young Investigator Award in Sports Cardiology,” Dr Miles said. “This competition provides an excellent opportunity to present work at an international level and is well recognised
The 2018 EuroPrevent conference was held in Ljubljana, Slovenia, between April 19th and 21st. CRY was delighted international experts to discuss new research into the prevention of cardiac disease and sudden cardiac death.
We were well represented by current and former Research Fellows who gave excellent presentations on a number of topics.
Dr Michael Papadakis (above) gave a superb presentation with the title “Apical HCM and mild phenotype HCM in athletes: Common and benign? Let them play?”. It considers whether we are too restrictive with athletes
needed when using statistics of the increased likelihood of death during exertion for those with an underlying issue.
Dr Papadakis made it clear that different conditions and sports will vary in terms of the risk they pose. For instance, exercise recommendations for those with hypertrophic cardiomyopathy in particular could be more lenient than we have previously thought. This prompts the need for more
them all under the same worrying statistics.
Former CRY Research Fellow Dr Sabiha Gati gave a brilliant talk on weighing the balance between physiology and pathology in left ventricular hypertrabeculation in athletes.
Professor Sanjay Sharma was involved with a very that research is currently disproportionately focused on men, and the panel debated whether this is because women suffer less from these conditions or because research is so heavily focused on men to begin with that we
Dr Trine Moholdt furthered the discussion by giving a presentation on whether women could physiologically reach
peers and supervisors Dr Elijah Behr and Professor Mary Sheppard, in addition to CRY for its essential role in funding the CRY Centre for Cardiac Pathology.
“CRY is supported by thousands of families affected by young sudden cardiac death and we hope to continue to make important progress into researching one of its important causes.”
Congratulations to Dr Miles, and to Dr Gherardo Finocchiaro
With so much CRY research being shared and Dr Miles’ award, EuroPrevent 2018 was a highly successful event. There are also more developments to come, as Dr Papadakis will be taking over as Chairman of the ESC Sports Cardiology Nucleus.
Dr Papadakis has been an extremely important part of the time and effort to helping develop EuroPrevent. His promotion to chairman will be welcomed by all those who support this important conference.
In this interview Dr Chris Miles discusses the arrhythmogenic cardiomyopathy research that he presented at EuroPrevent 2018 (“Sudden death and competitive sport in arrhythmogenic cardiomyopathy: A post-mortem study of young athletes”) that led to his Young Investigator of the Year award, and what his research aims are moving forward.
There is still much for us to learn about arrhythmogenic cardiomyopathy, in particular understanding more about why the condition arises and how it can be detected. This is especially relevant in young athletes, where competitive sport is an established trigger for heart rhythm disturbances.
Appearances of the diseased heart may also overlap with adaptive processes we see in the healthy athlete; it has been proposed that exercise may be enough to ‘trigger’ emergence of the condition in those with an underlying genetic susceptibility.
Over a third of young sudden death victims diagnosed with arrhythmogenic cardiomyopathy at expert post-mortem were engaged in competitive sport, principally sports with a high dynamic component such as football.
Young athletes who had died suddenly from arrhythmogenic cardiomyopathy most often died during physical exertion, primarily while participating in their sport.
They also had evidence of enlargement of the right ventricle alongside increased weight of the heart, consistent with the changes we see in the heart following prolonged athletic training.
I will continue my research into arrhythmogenic cardiomyopathy and also study the overlap with another rare disorder that affects the heart’s rhythm, Brugada syndrome.
My PhD will investigate the pathological and genetic basis of these conditions.
The overwhelming majority of our arrhythmogenic cardiomyopathy sudden death group had evidence of given its classical description as a right ventricular disorder (arrhythmogenic right ventricular cardiomyopathy).
There was also no difference in the presence of left ventricular involvement between young athletes and nonathletes, suggesting that ACM affects the whole heart independently of changes that occur in the right ventricle during sustained exercise.
Congratulations and a huge thank you to all the CRY runners who took part in the Virgin Money London Marathon 2018 on Sunday 22nd April on what has been reported as the hottest London Marathon on record! We are very proud of all our runners and so grateful that they chose to support CRY.
99 runners supported us this year. Running his 9th consecutive race in memory of Katrina Brown was our indefatigable Patron Bill Neely (below), Chief Global Correspondent for NBC.
Runners were invited to a post-race reception at the Hilton London Green Park Hotel, where refreshments (including a special discounted menu), shower facilities and our muchdeserved complimentary massages were available. Many thanks to CRY volunteers Rob Lundberg and Ian Wynn for setting up the massage facilities on the day.
Hiddy, Nat, volunteers and our runners’ families and friends kindly took photographs and cheered for all of our runners at miles 12 and 23, giving them an extra boost to inspire them to keep going. CRY’s volunteer cheerers were Jenny and James Boag, Graham Day, Terry and Don Granner, Wendy and Phil Harrington, Eirini Lyra, Anna Mahoney, Grant Nivett, Marina Tomsett, Sarah Tyler, Katie Williams and Elsa Williamson.
CRY staff Hiddy, Nat and Nicola, as well as volunteer Rob Pring, greeted runners and supporters at the start line to wish them good luck and kick off our social media coverage, posting photos of the runners on Twitter.
Katy and Chris Turberville, along with Graeme Attridge, Debra and Joy Down, Bob and Carol Finch, Abi and Harriet Jonas, Rob Pring and Jackie Worboys – also CRY area, to welcome our runners and offer them a drink and snack whilst they waited for the CRY shuttle service to take them back to the post-race reception. in 03:45:11.
As the afternoon progressed, runners started trickling back to the hotel. CRY staff member Maria Carter and
volunteer Jo Pickard greeted them outside the hotel and directed them to the reception area where each of them were welcomed with well-deserved cheers and applause. They were then checked in by volunteers Barbara and Jim Holland, offered a CRY medal by volunteer Sarah Wright, and photographed by CRY staff member Toby, after which they were able to enjoy the plentiful refreshments available.
runners, families and friends sharing their experiences from the day. CRY staff greatly enjoyed meeting and
were taken to the massage suites where the therapists helped to relieve their aching muscles. Massage areas were supervised by Balbinder Chutti and Narinder Mann who did a wonderful job of accompanying the runners and ensuring that they were not interrupted during their treatment.
A huge thank you to our volunteer massage therapists Teresa Brook, Alice and Karen Bacon, Andy Clarke, Jemma Clements, Samantha Hack, Daniel Holmes, Lorraine Hughes, Rob Lundberg, Clive Muller, Rebecca Pinnell, Stephanie Poulter, Maria Regan, Lisa Stepney, Andy Tibbott, Mike Tointon and Ian Wynn, some of whom have helped out regularly over the years and were much appreciated by all the CRY runners who came to the hotel.
After their much needed massages, runners were escorted to the hotel bedrooms which had been reserved for showers by our staff members Trudi Skelding, Rhianne Watson, Nicola Wright and volunteer Isabel Turner. Many thanks to the runners and supporters who returned to the hotel to meet us. And, of course, a big thank you to all of our wonderful volunteers.
As always, it was a challenging and emotional day for running or supporting runners in memory of a young
person. We are most grateful to everyone who has sent in photographs from the day.
Volunteer Kerry Ferne and CRY staff member Phil Houlton did a wonderful job of taking photos of CRY runners at the grandstand, whilst CRY staff member Toby did a great job at the hotel and CRY staff members Hiddy and Nat and volunteers Wendy Harrington and Marina Tomsett captured action shots along the route. Nat and Toby were able to tweet photos and information about CRY runners throughout the day.
Thank you to the Hilton London Green Park Hotel for hosting our post-event reception and providing dedicated staff to assist with any queries, as well as providing many
Leatherhead for giving us a discount on the hire of the two hotel – we greatly appreciate your support.
We cannot thank all of our runners enough for their time, effort and valued support. Well done to everyone!
All of the photos from the day can be viewed in our London Marathon 2018 Flickr gallery here: https://bit.ly/2HYoSGu
Fleur Adderley (in memory of Matthew Cragg) | George Apps (in memory of Junior Dian) | Matthew Atkinson (in memory of Jack Atkinson) | Daniel Augustine | Lynsey Ayers (in memory of Martyn Luckett) | James Bachelor (in memory of Rosie Mitchell) | Hayden Bailey (in memory of Tom Day) | Martin Baker (in memory of Ralph Murwill) | Jonathan Barnes (in memory of Howard and Sebastian English) | Joshua Baron | George Bastiman (in memory of James Moorfoot) | John Battle | Anna Bettiss | Nicola Blair (in memory of Christoper Hynd) | Jon Boast (in memory of Joanne White) | Joseph Booth | Dan Brickell (in memory of Max Biles) | Nick Brown | Dom Bruneau (in memory of David Nunoo) | Verity Burn (in memory of Seth Woolley) | Jonathan Butcher (in memory of Adam Pearmine) | Sophie Butterworth (in memory of Tom Russell) | Chris Callow (in memory of James Jermy) | Sarah Carter | Jon Chappell (in memory of Neil Walden and Isobel Midgley) | Kelly Cheney (in memory of Ollie Thompson) | Nicola Clark | Nicola Courtnage (in memory of Luke Rutter) | Victoria Cross (in memory of Phil Cross) | James Cunningham | Alice Currell (in memory of Sebastian English) | Rosalyn Day (in memory of Tom Day) | Naomi De Silva (in memory of Kevin De Silva) | Heidi Dormer | Simon Drake (in memory of Max Biles) | Gary Farrow (in memory of James Moorfoot) | Noel Fitzgerald (in memory of Anthony Fitzgerald)
Hannah Godfrey (in
Laura Godtschalk (in
Amber Hagan
John (Jadie) Hassell
Lisa Humphries (in
Oliver Hunt
Brandon Johnson
Steve Jones (in
Ciaran Judge
Stefan Klasener (in
Tania Lambert (in
Stuart Lammin (in
Rebecca Leigh (in
Paul Lote-Williams
Joe Lynskey
Jack Lyons
Laura Marks (in
Eleanor Mason (in
Joanne Mcallister
Aravon McCann
Georgina McCluskey
Lilli McGeehan (in
Liam McLaughlin
Andrew Mitchell (in
Jonathan MurdochSmith
Christopher Myhill (in
CRY Patron Bill Neely
Kevin Nicholas (in
Neil O’Sullivan (in
Nigel Oxley
Ciaran Padhiar
George Pangborn (in
Sandra Pankhurst
Alastair Pickering (in
Christopher Ransom
Michael Ransom (in
Carl Rattley (in
Grant Read (in
Sophie Rhodes (in
Jenny Routley
Nicola Salzl (in
Vicky Scott
James Skinner (in
Alexander Smith
Alice Spooner (in
Andy Stannard
Lisa Stubbs
Chris Summers
Chris Swain (in
Phil Sweatman
Allen Talbot (in
Daniel Tardif (in
Dominic Toms (in
Helen Vaites (in
Andrej Vaughan (in
Clinton Walsh (in
Fiona Watters
Matthew White (in
Chloe Wilkinson (in
Luk Ying Yick (in
Entries appear in the following section according to when CRY sends written receipt for funds raised. The following fundraising was receipted from January to April 2018.
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 are corrections from issue 74.
Chris and Mary sent in donations totalling £142.75, including a donation from Mick Whitehead from Raising Awareness Week and £10 from June Smith.
• Kate Bome sent in screening donations totalling £382.69 in memory of her daughter.
• Kate Bome organised an ‘80s night and raised £500.
• Kate Bome organised a bingo night at The Gardeners Pub in Chelmsford and raised £994.36 in memory of her daughter.
• Kate Bome organised a CRY Great Cake Bake event at Great Totham Primary School and raised £760 in memory of her daughter:
“Thank you to the parents, pupils and staff at Great Totham Primary School who supported me again this year
Dawn Dunk made a £520 donation from the CRY Great Cake Bake 2017 that should have read in memory of her son, Richard, not Matthew. We apologise to the Dunk family for making this mistake.
Unfortunately, the photo used for Suzanne Thomas and Nicola Cottrill’s £4,265.92 donation from taking part in the London Marathon 2017 was of a different Mark Price, not Mark Richard Price, the son of Dawn Price. We apologise for this mistake.
with the CRY Great Cake Bake. £760 was raised.”
• Success Recruit sent in £1,250 raised with CRY as their charity of the year:
“Thank you to Success Recruit, Chelmsford, for choosing CRY as their charity for 2017. Danielle Burdett and her colleagues chose to support the Charlotte Adams Memorial Fund after Dani lost her close friend Charlotte to SADS in 2014. A silent to raise an amazing £1,250.” Kate.
Matthew McNeeney and Katy Goldsmith held a speeches sweepstake at their wedding and raised £315.
Carolina Thorbert sent in £1,000 in memory of her partner.
Denver Hepburn completed a skydive and raised £130.
Janice Kirkness organised a local island picnic and raised £900.
James Banbury organised a pheasant shoot and raised £120.
Jody Barford raised £1,100 from the Great North Run 2017.
Jasmine Peek took part in walking the Jurassic Coastline and raised £664.70.
Mike Fleet organised a ‘grey beard day’ to celebrate his 80th birthday and raised £380.
Tony Baws sent in £100 in respect of Harold Margolis.
Hannah Bennett organised a charity disco and raised £1,532.16.
• Gemma Cannell sent in £4,900.28 raised as follows: £4,250.28 raised from a charity night, and £650 from the West Denton Fire Station Social Club.
• Linda and Kristofer Ternent raised £365 from the Great North Run 2017.
• Chris Mann raised £1,635 from the Great North Run 2017.
Michael Holmes did not drink alcohol for 50 days and raised £238.90.
Adam Birch sent in donations totalling £2,434.26 raised through his Someone Special page throughout 2017.
Susan Blair organised a quiz and fun night and raised £785 in memory of her son.
• Mark Blease sent in a further £110 raised through his Someone Special page throughout 2017.
• Karen Blease sent in £170 raised through her birthday celebrations.
• Lesley Bryant sent in £100 to commemorate what would have been Graeme’s 33rd birthday.
• Shirley and Richard Heywood donated £100 in lieu of sending Christmas cards and in celebration of Graeme’s birthday.
Christine Booth sent in £150 in memory of her niece.
• June and David Boulton sent in £878.10, including: £283.60 from Keynsham Cricket Club’s Charity Golf Day, and £594.50 in donations.
• June Boulton and the ‘S and B’ girls held a table at the Christmas fair in Saltford and raised £256, which June topped up to £300. A further donation of £250 was raised from the Cotswold Way Challenge.
• Rosa Sherwood sent in £10,536 raised through her
Someone Special page throughout 2017.
Maralyn and Kenny Bowen sent in screening donations totalling £133.47.
John Bradbury sent in £1,000 in memory of his son.
DHL UK Foundation sent in a matched fund donation of £1,200 in respect of monies raised by Matt Hill at his ‘Gingfest’ event.
• Elizabeth Bramwell raised £4,205 through donations to her Virgin Money Giving page.
• Lisa and Phillip raised a further £565 through their Someone Special page throughout 2017.
Elizabeth Bramwell sent in £800 raised through her Someone Special page throughout 2017.
• Michelle Bourne raised a further £215.50 through her Someone Special page throughout 2017.
her colleagues at Woodstream Europe Ltd and raised £102.
• Michelle Bourne sent in £220 from the staff of Reynolds Catering in lieu of sending Christmas cards:
“Here at Reynolds, we like to do our bit every Christmas and raise money for a worthy cause. We decided eight years ago that we would donate to a charity instead of sending each other Christmas cards.
“We chose once again this Christmas to support our friend and colleague Douglas Bourne with his efforts in Harley’s name, by donating the money raised to his grandson Harley Curtis Brandon’s CRY Memorial Fund.
“Everyone is a winner, including the trees, and we can see our money going towards helping charities such as CRY with the important work they do.”
• Freda and Doug Bourne sent in £100 in lieu of sending Christmas cards in 2016 and 2017.
• Mick Berry took part in the Do It For Charity London to Brighton Cycle and raised £499.34.
• Vanessa Berry took part in the Do It For Charity London to Brighton Cycle and raised £365.
• Jenny Bourne organised a charity auction and raised £901.10:
“On the 3rd of January 2016 my family suffered the tragic loss of my dear nephew, Harley Curtis Brandon, at just 21, to Sudden Adult Death Syndrome. Harley was a giant of a him you might think was scary and trouble; you couldn’t be more wrong. He was gentle, kind, considerate of others, and if you needed help he would do his very best to be there for you.
“I know you may think that as his aunt I am biased, but celebration of life by his Brighton university classmates (whom I nor his family had previously met), which told a story of how he got up in the early hours of the morning and went to pick two friends up from a night out.
“This is only a small part of what they had to say about Harley: ‘I once recall him riding his motorbike for over an hour around Shoreham, in order save two stranded friends from a cold night of rough sleeping after a festival. He made two journeys dropping them both back to the safety of their own homes.’
“Family and friends have organised quite a few events in Harley’s memory, and I decided that I wanted to help
raise awareness and some well needed funds for Cardiac Risk in the Young, as the charity his mum and family have
in the blink of an eye; and some literature to give the three sisters Harley has left behind, to try and help them understand what had happened to their brother and how to deal with their feelings from that huge loss.
“I kind of knew Sudden Adult Death Syndrome existed but I did not know what it actually was, what the causes and symptoms were, or who it could affect. Until Harley died, I, like the rest of his family, had never heard of CRY or what they do, but now we know and in Harley’s name we will try to do our bit to help prevent so many families suffering the heartache we have.
“Having successfully organised charity auction events in the past, what better way for me to help raise awareness and funds in Harley’s memory? ‘The Catmose Club’, Oakham, kindly donated the use of the hall for free because it was for a charity event. Prior to securing the venue for the auction I had been around local shops and businesses, asking them for non-monetary donations. I placed adverts on social media, local selling sites and asked friends and family to spread the word of the event as well as the need for items to auction.
“The response I received for non-monetary donations was overwhelming and generous. Some of the items kindly donated were: A very large fresh fruit basket, tea pot set, handmade crafts, overnight glamping voucher, a BBQ, package, photoshoot vouchers, a hairdresser voucher, and many more as you can see from the pictures.
“I contacted the local radio and newspaper asking if they would help in advertising the event which they kindly did. I also invited them to attend.
“On the day of the event we had a lovely spokesperson,
Pauline and Gary sent in £300 in respect of the ‘memory quilt’ made by Jackie and Anne from the North Hampshire Quilters in Basingstoke.
“Pauline and Gary Brown had some of Connor’s favourite t-shirts made into a memory quilt. Jackie and Anne from the North Hampshire Quilters in Basingstoke made the quilt but would not accept payment and agreed to donating money to CRY in Connor’s memory.” Pauline Brown.
Rosemary, from CRY, come along and speak to those who had attended about what the charity does and share her experiences, as well as Harley’s mum (my sister in law), Michelle.
“Sadly, we did have a few disappointments on the day such as people not turning up who had previously offered their services, poor attendance from the public and no radio or newspaper coverage on the actual day. Despite all of that, with the friends, neighbours and locals that did come along on the 1st of July 2017 to support us we managed to raise £901.10.
“Even though the attendance wasn’t as good as I had hoped I do know that I have managed to get some awareness and information out there with the use of personal experiences. I want to thank everyone who gave our family their support and their money for such a good cause.” Jenny Bourne.
Steven Brookes sent in £150 representing donations
• Stephen Cox at CMC Markets UK plc sent in £1,500 in respect of CRY’s Chief Executive, Dr Steven Cox, taking part in the company’s ‘Dragons Den 2017 competition’ presentation.
• Brenda Broughton and her daughter, Julie, sent in husband and Julie’s father.
Shelly and Rich organised the Danny raised £2,560.
Mr and Mrs Brown sent in £200 in memory of their son.
• Kev Butcher (Leanne’s uncle) and Andy Vass raised £130 through a charity northern soul and motown night.
• Lynne Brownhill donated £110 in lieu of sending Christmas cards in memory of her daughter.
Mavis Bryan sent in £450 representing donations
Hillary and Bill Durrant sent in £2,730 raised as follows: £400 from their annual quiz night; a £40 donation relating to the display of Bill’s Christmas tree; £145 from Bill teaching his pole lathe turning skills; a £50 donation from Mr and Mrs Finnis; £30 from Mrs E Hill; £20 from Mrs J Bush; £180 from Christmas Whist Drive in the Village Hall; and £1,865 in donations, including £200 in lieu of Christmas gifts.
• Heather Jordan sent in £440 raised by Miss Supermodel/Miss Teen Staffordshire 2018.
• Quinlan Reardon-Davis organised the Pubzine’s Burslem Rocks and raised £100.
• John Ruggiero sent in £100.
• Nicola Burndred sent in £215 in memory of her son.
Mrs Armer donated £325 in lieu of 60th birthday gifts in memory of her cousin.
Lucy Burton raised a total of £735 through her Someone Special page.
• Angela Butler sent in screening donations totalling £275.
• Eric Lockey sent in £200 from St Peter’s Lodge No. 419.
• Katie Chell donated £100 in lieu of wedding favours.
• The Tesco Retired Staff Association (Group 27) raised £350.
• Jackie Brookes MBE forwarded a donation of £250 received from the Masonic Charitable Foundation through Soroptimist International Bilston and District.
Adam Butterell completed the Brunello Crossing 44K and raised £9,376.50.
• David White sent in £300.
• Karen sent in £247 raised from the making and selling of Christmas cork reindeers by the fundraising club at Macmillan Academy, Middlesbrough, in memory of her son.
• James Brown took part in the Tees Pride 10k Run and raised £110.
• Paul Goodfellow sent in £100 from Elite Maintenance and Installation Services Ltd in Gateshead.
• Martin Dunford forwarded donations totalling £210 raised through his JustGiving page.
• Michelle Carloss forwarded donations totalling £383.79 raised through her JustGiving page.
Katy Simmons took part in the Great South Run and raised £880.
Ken and Jennifer Frost celebrated their 50th wedding anniversary and raised £280 in memory of their daughter.
Hannah Atkinson raised £135 from the Great North Run 2017.
• Natha Chauhan sent in £100.
• Sweena Chauhan sent in £100 in memory of her husband to commemorate his 40th birthday.
Jo and James Dean organised a charity golf day and raised £4,000:
“We managed to raise £4,000 for CRY. We also supported in Bedfordshire, which links in nicely with CRY. The day was fantastic and people donated generously, which was very touching to us and Mark’s family.
“James, Mark, Shane and Marcus were best friends with Mark Law Hing Choy and when he suddenly passed away they promised Mark’s dad, Frank, to hold a golf charity day in memory of him. Seven years later the charity day is still going strong with more and more people attending, which is great for the charity and as a day to remember Mark. Myself, Karen, Nicola and Kellie all help out the boys to organise the yearly event.” Joanne Dean.
• Vivienne Christopher sent in £281.55 raised at Tesco Leyland in memory of her daughters.
• Julia Parkinson took part in the Keswick Mountain Festival Triathlon and raised £435.
Rachel Job organised the Ealing Eagles moustache challenge and raised £1,117.50.
Julie Clay sent in £100 representing donations received in
Ann Armstrong sent in her annual donation of £200 in memory of her daughter.
Nathanael Ravenlock took part in Water Wipeout and raised £280.
Clare Perry raised a further £8,693.50 on her Someone Special page throughout 2017.
• Patricia Connor sent in £245 raised through her Someone Special page throughout 2017.
• Patricia Connor sent in £205 representing Dinner in memory of her son.
Owen Browell raised £1,251.06 from the Great North Run 2017.
Jackie Cousins sent in a total of £515.08 raised as follows: a £200 cheque from the Vermuyden Group Women’s Institute Christmas Carol Concert; £128.08 from the Ladies of the Thorpe Hesley WI Group in respect of a talk given by Jackie; £61 raised from a market stall; and a £126 donation.
• James Cook sent in £150.
• Mike and Alison sent in £300 from a friend in memory of their daughter.
• David Fraser sent in a further £765.23 from his Someone Special page raised throughout 2017.
• Debbie Cragg sent in £100.
• Ryan Saunders organised the ‘Matt Cragg Memorial Rugby Match’ and raised £885.
• John’s Investment Chronicle sent in £1,104.
• Philip and Nita sent in £100.
• Sam Mellett took part in the London to Rome Cycle and raised £1,975.
• Imelda Munro sent in £200 from Richard, Alex and Mel.
• Hope Valley College organised a sponsored walk and raised £922.
• Christine Lewis, Chairman at Worksop Tangent Club, sent in £125 raised at their New Year lunch.
• Wells Dressing Committee.
• Susan Wyatt sent in £100.
Dawn Cubin raised £4,960.15 from her Someone Special page in memory of her daughter.
The Reverend Cunningham sent in £100.
Ingrid Dalrymple sent in £135.69 raised from a cake bake sale at Kirkwall Police Station in memory of her daughter.
• Ravens Wood School sent in £3,183.44.
• Paul and Helena sent in £100 raised from their Someone Special page.
• Paul Daniels sent in £4,550 raised by the Old Elthamians Rugby Club.
Rosalyn Day raised £305 through her Someone Special page throughout 2017.
• Naomi De Silva sent in £546.22 raised through her Someone Special page throughout 2017.
• Jessica and Jamie Gould took part in the Humber Bridge Half Marathon and raised £525.
• Sarah and the Strathmore Warriors took part in Trekking the Pyg Track and raised £183.
• Jay, Yasmeen, Josh, Aaron and Joe
completed the Welsh 3000s Challenge and raised £1,150.
• Lauren Dean sent in £16,595.12 raised through her Someone Special page throughout 2017 in memory of her brother.
• Sarah Hughes organised a bounce-a-thon and raised £554.50.
• Janine Dean sent in a total of £1,276, including: £230 from the customer access team at Stoke on Trent Council; a further £565 raised through the ‘Jammin for Jake’ event held at Marston’s Inns and Taverns; and £472 from ‘Jake’s Boogie bounce-a-thon’ event.
sent in £400 raised from various fundraising activities during 2017.
• Sarah Lambson took part in the Great London Swim and raised £700.
• Ann Demaine forwarded a donation of £300 from Millward and Elliott.
• Sue and Chris sent in a further £47,362.33 raised from their Someone Special page throughout 2017, in memory of their son.
• Marcus Whaley took part in the Birmingham Marathon 2017 and raised a total of £430.
• Hazel Vernon sent in £320 given in lieu of presents for her 50th birthday, in memory of her husband and Matthew.
• Sue and Chris Dewhirst sent in donations totalling £7,650 raised as follows: £4,800 from ‘Climb Kili 2017’; £750 from Hazel Vernon’s 50th Birthday; and £2,100 from Hen Party for Meghan Markle.
• Gary and Deborah forwarded a donation of £20,000 from the JD Foundation.
• Gary Dixon sent in donations totalling £599.59 raised through his recent screening event.
• Deborah Dixon forwarded a donation of £750 from Aqueous Consulting Limited.
• Brigid Williams sent in £200 through her birthday celebrations.
• Mary Roberts sent in £100 in memory of her nephew.
• Liam Rabbittee raised £135 from the UKFast We Love Manchester 10k.
• Mario and Deborah sent in £28,000 in memory of their son.
Sheree and Gordon forwarded a donation of £220 from Crown Hair, Congleton,
Mrs H Kurlapski sent in £100.
Hilary Edwards sent in £172.50 raised by bellringers and friends of Stoke St Mary Church through carol singing:
“The bell ringers and friends of Stoke St Mary village, outside Taunton, were out and about carol singing on Thursday evening, 21st December, raising funds for CRY and Hearing Dogs for Deaf People. Everyone was so kind offering sustenance along the way. The funds for CRY are for the memorial fund of Gary Edwards who died of a previously undiagnosed heart condition on 12th July 2015. Hopefully a screening and raising awareness event
Hilary Edwards and Rachel Drew.
Chris Embling sent in £3,644 raised as follows: £100 from McTigue’s Funeral Directors; £90 from Castleford Tigers RLFC; £100 raised through the sale of Chris’s hen’s eggs; £1,800 from sponsorhip for Chris’s beer barrels at the recent Ackworth Beer Fest; and a further £1,554 raised from the Ackworth Beer Fest:
sure what to expect, but we were absolutely overwhelmed by the support we got and the number of people who attended. We had over 20 real ales and three ciders and raised an incredible amount, including barrel sponsorship from over 20 local businesses and individuals for which we are so grateful.
“We donated £400 from the funds raised to Ackworth Junior Football Club with whom we have a great working relationship. This meant that we were able to send £3,624 to Rory’s Foundation at CRY.
“We would like to thank everyone who worked so hard on the day to help us to achieve this and also all the people who attended and helped to make the beer fest such a success. We hope to have a second beer fest next year.” Anne Embling.
• John Bailey sent in £100 in memory of Sebastian.
• Ben Thompson organised Christmas fundraising at Foresight Group and raised £293.67.
• Frederick Thompson sent in £100.
Lindsay Holland organised a ladies’ night and raised £523.43.
• Melanie, John, Darren and Paul completed a Ben Nevis Trek and raised £557.
• John Anderson sent in £100.
• Grace Mcinnes sent in £339 raised at Morgan’s local pubs beer festival.
Liam Rogers organised the ‘Fitnes for Fal’ event and raised £1,222.99.
• Julian Craxton sent in a total of £390 raised in respect of the latest Radlett Junior Squash Tournament.
• Berkhamsted School sent in donations totalling £4,900 in respect of a recent screening event.
• Donna Faulkner sent in £13,500.
• Tom Fazakerley completed a triathlon and raised £2,908.55.
• Bowmen – Edge Grove Academy Tournament and raised £175.
• Graham Lake sent in £500 on behalf of the Lions Club of Berkhamsted.
• Rich and Donna Fell raised £2,557.06 through their Someone Special page throughout 2017.
• P. Everingham and Sons donated £170.
• The Threshermen sent in £1,000.
• Carole Baxter at Hornsea Indoor Bowls Club sent in £450.
• Rich and Donna Fell sent in £250 from the Masonic Lodge in Hull:
“One in 300 people have a potentially life-threatening cardiac condition.
“Technical Lodge 5666 invited brethren to bring their guests to a very moving talk about CRY, a charity that provides heart screening for 14-35 year olds.
“W. Bro Jonathan Sykes introduced Richard and Donna Fell to speak about their charitable fundraising for CRY and their harrowing personal experience that brought them into contact with the charity.
“Donna explained to the assembled audience that she and Richard had been involved with CRY since August
2011. The reason being that their 15-year-old son, Josh, collapsed in June 2011. It started on a Thursday night and Josh was late home from school. After calling his mobile they went to Hornsea School. When they arrived the ambulance was already there. However, the hospital had to inform them that Josh had passed away.
“The diagnosis was Sudden Adult Death Syndrome (SADS). This is where the body’s electrical signals shut down. Following this terrible tragedy, CRY provided the much appreciated counselling.
“To help prevent this loss for other parents, Richard and core funding and the funds they’ve raised after that have gone into a memorial fund for Josh.
“This has gone towards research and screening. So far they have raised £150,000. It costs £10,000 for a two-day heart screening session, and so far their fundraising has paid for 2,000 young people to be screened.
“It is a simple ECG. If there is an issue, the individual is referred to their GP. However, despite screening appointments being free of charge, some people book but do not attend, which costs CRY money and potentially prevents someone else from attending.
“This emotional and very personal talk moved some present to tears. W. Bro Jonathan Sykes gave a donation for the sum of £505.50.” Masonic Lodge, Hull.
Tara Field raised £575 from organising a carol concert and charity show, ‘A Night at the Musicals’, in memory of her sister.
Stephen Fisher sent in £10,295 raised through his Someone Special page throughout 2017.
• Marie Fitzgerald sent in donations totalling £790 raised as follows: £470 from a memorial rugby game, and £320 from the Murphy family.
• Laura Fitzgerald raised a further £12,115 through her Someone Special page in memory of her brother.
Kirsty Fitzpatrick raised £7,418.23 through her Someone Special page throughout 2017 in memory of her daughter.
Ciara Flood took part in a Kilimanjaro trek and raised £160.
• Aaron Cox sent in £180 in respect of Boys Night Out #9 2017.
• Frances Mihailovic raised £660.60 from the Great North Run 2017.
Ullapool High School applied for a grant from YPI Scotland and were awarded £3,000 which they donated to CRY.
Sarah, Andrew, Andy and Jenni took part in the Birmingham Marathon 2017 and raised £1,555.
Nicole McShane took part in a Santa Run and raised £220.
James Galligan sent in £100.
tributes in memory of her dad.
Jackie German forwarded a donation of £145 raised from a collection box at her brother’s shop.
Kayleigh Drake raised £182 from her Someone Special page.
Minal Sports and Social Club organised a cricket tournament and raised £200.
Linda Goodwin sent in £491, including: book sale and eBay sales; £150 from Julie Saysell; and £100 given to her by her neighbours, Martin and Chris, as a thank you for walking their dog.
• Dave and Sue Jones sent in £200 in appreciation of their son being screened.
• Tom and Judy sent in donations totalling £2,114 in memory of their son, including: £610 raised at The Peel Arms, and £121 from Market Drayton Medical Practice.
Pete Lockyer completed a sponsored cycle and raised £1,110.
Shelagh Green sent in £100 on behalf of her mum.
• Francesca Waite raised £2,050 through her Someone Special page.
• Linda Pratley sent in £1,032.02 from the Inner Wheel District 11.
• Julie Allen took part in the Great Midlands Fun Run
and raised £490.
• Paul Thomas took part in the Great Midlands Fun Run and raised a further £260.
• and raised £2,897.72.
• CRY Representative Peter Patterson collected a donation of £213 from McColl’s Newsagents, Witham.
• Wendy and Leon organised a quiz and poker night and raised £1,194.10 in memory of their daughter.
• raised £670.
Mrs L Brackenbury sent in £100 in memory of her niece.
Mrs Grootveldt raised £609.29 through her MuchLoved page in memory of her husband.
• Jane George sent in £210.
• Stephen and Sheralyn sent in £17,676.88 raised through their Someone Special page throughout 2017.
• Mary Taylor sent in £3,266.30 raised through running 10 half marathons in 10 days.
• Sheralyn Hammond forwarded a donation of £500 from the Weald of Kent Ploughing Match Association.
• Bradwell Friday Nighters sent in £100.
• Anne Palmer sent in £200 from Hope Valley Darts and Domino League.
• Ian and Debbie sent in £1,000 raised by Chris Hudson from his walking challenge.
Angela Hancock sent in £477.01 in memory of her husband raised as follows: £208.93 from screening donations; £227.49 from Angela’s mum, Anne Barber, through craft stalls; and £40.59 from Garden Town Quilters in lieu of Christmas cards.
Neil Hands sent in £262.48 representing donations
Terry and Katharine donated £200 in memory of their daughter.
Ernest and Ann sent in £100 in memory of their son.
Emma and Steve Coffey took part in the New Forest Half Marathon and raised £467.50.
• John and Judy forwarded a donation of £729 from the McCain Foods Agriculture Team raised through their race night.
• Pam Woodcock organised a quiz night at the £320.
Peter Hayes organised an annual Good Friday football match and raised £280.
Marion Hayman organised The Four Trigs event and raised £1,570.25:
• Ivan Thomas completed the Three Peaks Challenge and raised £4,457.36
• Thomas, Sam, Pippa and Brooke took part in the Tough Mudder and raised £1,654.19.
• Francesca Marie took part in the TH96 Fun Run and raised £579.
“Sunday 11th February saw the 18th Four Trigs Challenge, with 104 runners setting off across the seafront in sunshine to compete in this gruelling challenge. Weather conditions were variable, with hail one moment and sun the next. Due to the rain of previous weeks there was, of course, plenty of mud.
“The challenge is a self-navigated run to each of the four triangulation points circling the Sid Valley with a start
then making their way across Mutters Moor, then down through Harpford Woods before climbing to the second
Hill. First lady home was Jessica Raynor from Sidmouth Running Club in a spectacular 3 hours and 2 minutes. The youngest runner was 20-year-old Samuel Kelly of Exmouth Harriers.
“Race organisers Marion and Robert Hayman chose to raise the money for CRY in memory of their son, Jonathan, 27.
“Marion said that they were delighted by the amount raised and would like to thank everyone who supported the day. She went on to say: ‘Without our amazing team of marshals and helpers and the support of the community we would not be able to hold this event. The competitors also ran in the spirit of the race.’
“A very big thank you to Hayman’s Butchers and Ian Winchester and Sons for sponsoring the event. Also, a very big thank you to all the marshals and the team of ladies providing tea, coffee and cake.
“The Sidmouth Four Trigs Challenge has netted £5,409 for CRY over the past four years.”
• Natalie and Elliot took part in the Blenheim Half Marathon and raised £1,575.
trig at Fire Beacon Hill. From here the trail runs inland to White Cross, then drops down into Sidbury before climbing the other side of the valley to Trig 3 at Buckton Hill. From here a dip down in Harcombe is followed by a climb up to the donkey sanctuary and out to Trig 4 at
and psychologically the hardest, is still to come. The trail dips down to Weston Mouth then up to Dunscombe Cliff, down to Salcombe Mouth, up to Froggie Rock and then distance and involves 3,200 feet of climbing.
“Hosted by Sidmouth Running Club, this friendly and sociable event attracted strong contingents from local clubs including Exmouth Harriers and Axe Vale; other clubs around Devon; as well as runners from Hampshire, Dorset and Wiltshire. The event was organised by Marion and Rob Hayman who were well supported by a team of marshals on the course.
in 2 hours and 13 minutes, followed by Matthew Clist,
• Natalie Bird took part in the Blenheim Half Marathon and raised a further £495.
• Barry and Paula donated £108.40 in respect of the Nathan’s Wastesavers Rag Bag fundraising in memory of their son.
• Paula Hesmondhalgh sent in donations
totalling £2,886.80 raised as follows: £419.03 from store; £94.61 collected by the staff and customers of Garstang Timber; £15.06 collected by the staff and customers of The Fish & Chip Plaice, Garstang; £66.00 from author Mr J Waite; £150 from Barbara Richmond in lieu of presents for her 90th birthday; £642 in donations from a screening at Garstang; £425 raised from her annual country coffee morning at Garstang URC; £293.30 representing donations
Richmond; £311.92 from providing refreshments for Garstang Running Club’s event, The Garstang Gallop; £160 from Des and Veronica McBride in lieu of gifts for their golden wedding anniversary; and £309.88 from a market stall.
• Cabus Players Amateur Dramatic Society donated £100 raised through producing two plays and donating 50p from each ticket sold to CRY.
• Nathan’s Wastesavers donated £152.40.
Tina Rawlins donated £110.
Eleanor Battel raised a further £1,996.59 on her Someone Special page in memory of her brother.
Magdalena Ziarko sent in £100 in respect of the baptism of Annabelle Garabette at Winchester College.
• Mr and Mrs John Weaver sent in £542.50 raised at a recent concert by the Boothville Community Choir.
• Tony and Joan sent in donations totalling £430 raised as follows: £30 from Mrs P Hemshall and £300 in lieu of Christmas cards and presents to friends and family, including a £100 donation from Michael Wreford.
• Helen Janiszewski took part in the Robin Hood Half Marathon and raised £1,112.
West Sussex County Council sent in £196.20 raised from their ‘wear red’ day.
tributes in memory of her husband.
Lauren Knowles donated £150 in respect of her forthcoming wedding.
Gemma Holland sent in a further £140 raised through her Grace Bear Campaign.
Melissa Horne organised a charity gig and raised £1,485.60.
Jane Howard held collections at Tesco and the light switch on at Thetford and raised £980.
• The Parish Church of St Laurence, Ludlow, sent in £351.40 representing donations received in lieu of
• Pam Adams sent in a further £200 representing of her mother.
Lindt & Sprungli UK sent in £1,800. CRY was nominated for this donation by employee Jen Lawrence.
• Julian Iacoponi organised the Julian Bear Cup and raised £250.
• Samantha Harris sent in £2,000 raised by buying turkeys in August, giving them a happy life and giving them to friends in exchange for a donation before Christmas.
• Tom Smart forwarded a donation of £275 from Saunderson House Ltd in respect of the Alex Hubbard Memorial Tournament.
• Old Stede House at Berkhamsted School organised a cake sale and raised £198.80.
• Bradley Wilson and his team took part in the Potters Arf Marathon and raised £330.
• David Hughes sent in £1,000, including a £500 donation from Ashby De La Zouch Round Table.
• David Hughes sent in £1,960 raised as follows: £1,300 from Fishers Dewes Solicitors; £120 from Mr and Mrs Franks; £500 from Audley Rotary Club; and £40 from P A Carey.
• David Hughes sent in £1,075.
• David and Susan raised £31,138.17 through their Someone Special page throughout 2017.
memory of her grandson.
Bea Dolby organised a ‘guess the number of sweets’ competition and raised £30.50.
• Shirley Neal raised £513.37 through her MuchLoved page in memory of her son.
• Gail McIntosh organised the Hux Crux Challenge and raised £1,861.
Isabel Spurway hosted a brunch for Moonglu Cycling Club and raised £105.
Jayantha Jayawardena donated £100 in memory of his son.
• Tracey and Stephen raised £128 through their Someone Special page in memory of their daughter.
• Tracey and Stephen organised a Christmas hamper fundraiser at the Packhorse Pub/Restaurant and raised £500.
David Jewell sent in £255 raised through his Someone Special page in memory of his son.
Colin Lee sent in £200 representing family donations
Carl and Eunice sent in £500 to commemorate various anniversaries, including Lisa’s 40th and 41st birthdays.
Ashley Johnston took part in the Royal Parks Half Marathon 2017 and raised £610.
• Keith Weston sent in £680 raised from various talks.
• Hilary Wagstaff sent in £125 raised by her son, Mattie, taking his ‘guess the number of sweets’ jar in to school.
• grandson and his great grandma.
• Berkhamsted Motorcycle & Car Club Ltd sent in £750
raised from the proceeds and sponsorship of a recent motorcycle trial.
Suzanne Keeler-MacDonald sent in £103.08 raised through taking part in the Asda Foundation York 10k.
• Penelope Johnstone sent in £365 raised from the sale of calendars.
• Neil Kellogg sent in £474.13 in memory of his son, raised by Colin Hunt holding a match day bucket collection at Mickleover Sports Football Club.
Jake and Josh took part in the 5k Muscle Acre Obstacle Race and raised £1,026.
• Martin Kerwood sent in £100 from his friend Vanessa Parsons.
• Ebony Moore organised a charity football match and raised £801.10.
• ASL Application Solutions (Safety & Security) Ltd donated £5,000.
• Ernesford Grange Community Academy organised a memorial day and raised £236.85.
• Nicola Ketley set up a MuchLoved page and raised £1,952.29 in memory of her daughter.
• Jenny Childs sent in £2,000 raised from the Gilnahirk Presbyterian Church autumn fair.
• The Halifax Foundation for Northern Ireland sent in a matched fund donation of £500 in relation to Mrs Danielle McKay organising a family fun day.
• Janice Klitzke raised £376 from the Great North Run 2017.
• Jane Krish sent in £100.
• Rachel Krish took part in the Southampton Half Marathon 2017 and raised £2,805.
Parvin Kukar sent in £250 to commemorate the anniversary of Rishi’s death.
• Mun Seng and Birte Lam sent in £1,780.86 in memory of their son, including: a £175.01 donation, and screening donations totalling £1,605.85.
• Charlie Allen took part in the World’s Toughest Mudder and raised £285.
• Burston Garden Centre sent in £390 raised through their Christmas tree delivery.
• Gordon Reboul took part in a Kilimanjaro trek and raised £444.25.
• Ian and Duncan Robertson raised £1,750 from the Five Towns Golf Challenge.
• Ruth Cain sent in £130 from David Thorpe, raised from the gentleman’s dinner at the Kyte Hotel.
Tom Ledgard sent in £1,000 from Enterprise Rent-A-Car (Foundation Fund) in memory of his brother.
• Tony and Diana Smith and their friends at Tailor Made Systems Limited donated £500.
• David and Nicola sent in £542.75 in memory of their daughter raised as follows: £467.75 in respect of a Christmas concert by the Camerata Singers, and £75 from Fuller Craft Group.
• David and Isabelle sent in £320 raised by The Hull Male Voice Choir from their Christmas fundraising concert.
• The King’s School in Pontefract sent in £316.62 raised from a non-uniform day.
• Bill Leigh sent in £100 raised by the Hull Male Voice Choir and Sewell Group’s Christmas concert.
Peter and Kim sent in £10,000 on behalf of #TALE (The Adam Lewis Effect).
• Charlotte Leyland raised a further £195 through her Someone Special page in memory of her brother.
• St Giles’ Catholic Primary School organised a Christmas concert and raised £349.85.
• Maria and Ian Leyland donated £100.
• Samantha Moseley donated £100.
• Ron and June Wood sent in £300 in lieu of gifts for their 50th wedding anniversary.
• Nick Cunningham organised a casino night and raised £400:
“What a fantastic night at the casino event organised by the Six Towns Rotary Club for CRY on Saturday 10th March. A £400 cheque was presented to us, which will screen another eight young people. It is certainly an event to consider in the future. We would just like to thank you all for your hard work and organisation, and for making us all feel so welcome.” Charlotte Leyland.
Amy Loach sent in £215 raised through her JustGiving page.
• Yasmin Roberts sent in £200 from Nteractive Consulting.
• Graham and Jennie raised a further £7,238.92 on their Someone Special page throughout 2017.
• Susan Barr sent in £100.
• Michelle Hopton at Swanland Parish Council sent in £198.77 raised from a street collection at ‘Father Christmas on Swanland Pond’.
• Peter and Susan Loncaster sent in £250 in memory of their grandson.
• Paul Hopton at Legal & General Group Plc forwarded a donation of £200.
Darren Baker organised a charity boxing match and raised £540.
Lucy Goodwin sent in £700 from Alsager School Society.
Laura, Kathleen, Brett and Paula took part in a Colour Run and raised £465.
• Charlotte Henderson raised £746 through her Someone Special page throughtout 2017.
• Brenda Luckett sent in £6,280.85 in memory of her son.
• Santander Foundation sent in a matched fund donation of £1,000 in respect of Jana Wonnacott’s charity bingo night.
• Nicky Harris raised £897.02 through talking about Alan and the work that CRY does.
• DLA Piper UK LLP sent in £3,800.
John Lundy sent in £2,000.
Jessica Flack sold calendars put together by the businesses of Pensford Village and raised £610.
• Murdo and Dolina sent in £4,300, including £4,000 from the LHYCA Hebridean Cycle Challenge and £300 from the Women for Mission branch of Knock Free Church, in memory of their son.
• Derek Mackay sent in £100 from Stornoway Masonic Lodge ‘Fortrose 108’.
• Cathy Macleod sent in £250 in respect of a talk at Women for Mission, given by Murdo Macleod.
• Donald and Christina Smith sent in £200.
Alison Bacon sent in £400 raised from the retiring offering at Tonbridge Baptist Church and donated to the Football Fightback Fund.
Narinder and Jarinder Mann organised a ‘Curry Off’ during Raising Awareness Week and sent in £1,301.76, including a matched fund donation of £650.88 from Agility:
“Me, my husband and some of my family made over 60 curries, as well as chocolate brownies, pokoras and samosas and sold them to my colleges at Agility over the duration of Raising Awareness Week. My niece, Pritti, made some lovely cupcakes for us to sell as well, which all went down a treat and we sold every single one.
“We hope we have made Balinder proud by keeping her memory alive and will continue to do so. The amount raised has given us much satisfaction and we hope this helps towards the research of undiagnosed heart diseases.” Narinder Mann.
Julie Hatton sent in screening donations totalling £133.47.
Gill Weston sent in £12,000 in memory of her son.
• The Balancing Borselino Brothers sent in £500.
• Coca Cola Enterprises at Edge Hill University sent in donations totalling £2,958.
• Maureen Marshall sent in £705.48, including: £500 from collection boxes at Edge Hill University; £48 from Maricourt School; £100 from Mr K Healey; and £57.48 from Slimming World.
Val and Roger sent in £100, including a £40 donation from Richard’s godparents, Sheila and Jack Payton.
Alan Mayger sent in £200 in lieu of sending Christmas cards.
Peter McAvoy forwarded donations totalling £350, including £200 from his exwork colleague Alice Fell, and £150 from
the Zumba ladies who attend his wife Anne’s classes.
Janette and Malcolm Pollard sent in £100 in memory of their nephew.
Aravon McCann sent in £590 in memory of her daughter raised as follows: £40 from Maguiresbridge Girl Guides, and £550 in lieu of birthday presents:
“My 50th birthday party – I will never forget. What an amazing night with all my amazing family and friends. And on the night I requested no presents but instead asked if anyone wanted to give a small donation to CRY. A huge thank you to all my running buddies at MRC (rent-aparty) who all had a ball that night. I was overwhelmed at having £550 by the end of the night. This is, as always, in memory of my gorgeous daughter, Aine, who I know was with us in spirit. Years pass but the pain remains. Not an occasion goes past where you don’t feel that little ache that part of our family is missing.” Aravon McCann.
Maura Bowen sent in £130 representing donations
Ashok Shishodia sent in £127.06 raised through fundraising at the RBS branch in Gogarburn, Edinburgh.
• Alexandra Basirov raised £3,407.12 through her MuchLoved page in memory of her brother.
• Margaret Roser sent in £822.50 raised from her swim of the Straits of Gibralter.
Rebecca McKay raised a further £1,672 through her Someone Special page in memory of her brother.
• Michael Meadows sent in £140 raised as follows: £100 on behalf of his wife, Julie, and £40 from his colleagues at XPO
• Nicola Bennett sent in £383.35 raised by the A&E department at George Eliot Hospital.
• auction and raised £730.
Bernadette McSharry took part in the Royal Parks Half Marathon 2017 and raised £566.20.
tributes in memory of his brother.
• Madison Merrick sent in £210 raised from not drinking alcohol throughout October.
• Eileen Prendergast forwarded donations totalling £129.43 raised from collection pots at the following locations: £26.45 from Fletcher Moss; £81.07 from Ye Olde Cock; and £21.91 from The Royal Oak in Didsbury.
at Martin Brower Ltd and raised a total of £635.
The Bear Church sent in £1,293 raised from the biannual church pantomime, Jack and The Great Beanstalk Caper.
Kirsty has raised £3,933.50 from her fundraising efforts since 2011, most recently her Glencoe Marathon Challenge with Scott and Barry in memory of John and Sam.
Rebecca Warner donated £145.
• Peter Cullum at Global Risk Partners Limited sent in £250 in respect of sponsorship for Stephen Ross taking part in the Ride4Rosie challenge in Spain.
• Andrew and Rachel raised £25,152.50 through their Someone Special page in memory of their daughter.
• Helen, Victoria and Clare took part in a triathlon and raised a further £1,130.
• Keith, Alex, Ben and Kristen took part in the DIFC London to Brighton Cycle and raised £1,000.
Brandon Fleming took part in the Hull 10k and raised £205.
Jessica Davidson organised a ‘beat the goalie’ competition in her school, St Matthew’s Primary, Bishopbriggs, and raised £25.50 in memory of her cousin.
• Ruth Leeds took part in the Cardiff 10k and raised £615.
• Kate Galloway took part in Owen’s Ride and raised £165.
• Judith Hassey held a cake sale during her screening weekend and raised £905.
• Dawn Moss sent in £131.
• Dawn Moss sent in £1,225.67 raised through various fundraising activities in memory of her son.
• Claire Byrne raised £390 from hiking Ben Nevis.
• Kim Leadbeater raised £150 from hiking Ben Nevis.
Yvonne Moss sent in a further £952 raised through her Someone Special page throughout 2017, in memory of her son.
Christ Church Cathedral School organised a ceilidh and raised £345.
McNaughtons of Pitlochry sent in £125 raised from a collection box.
Rose and Gary sent in £1,033 in memory of their son.
• Adrian Topp sent in £1,100 from Clowne Road Runners Club following the Clowne Marathon.
• Amanda and Adrian Topp sent in £6,550 raised from various activities at: Langwith Gala; Dobbies Garden Centre; Springs Health Centre; Crystal Peaks Shopping Centre; a cake and coffee weekend event; and the Clowne Marathon.
• Resham and Dalbag sent in screening donations totalling £1,142.30 in memory of their son.
• Richard Smith sent in £469 raised through climbing Mount Snowdon.
• HM Land Registry donated £770 in respect of Sundiljit Gill’s raising awareness event.
• Sarah Fuller organised a coffee morning and raised £120.
• Murray, Catherine and Joe sent in £200 to commemorate Lizzie’s 23rd birthday.
• Simon Carter sent in £100 to commemorate Lizzie’s birthday.
• Tim Higgins sent in £100.
• Lesley Nicholas raised £390 when taking part in the Great North Run 2017.
Wendy and Jenny sent in £460 representing donations received in lieu of Ellen.
Mr and Mrs H Danio and Mrs Agnes Mary Bennett sent in £150 in memory of Ellen.
Victoria Theaker raised £4,391.46 through her JustGiving page.
Derek and Pat sent in £100.
Megan O’Donnell climbed Ben Nevis and raised £2,035 in memory of her dad.
• Christopher Oliver sent in £554 in memory of his son, including: £374 from a coffee morning, and a £180 donation.
• Elm Ridge Methodist Church held a Christmas coffee morning and raised £177.75.
• Sarah Holmes sent in £650.85 from Zyro Limited.
• Graham Oliver raised £1,645 from a cycle from London to Southend-on-Sea.
• Melanie Gooder raised £14,216 through her Someone Special page throughout 2017.
• Melanie Gooder sent in £100 from a friend in memory of her niece.
Matthew Proudfoot raised £345 from the Great North Run 2017.
CRY Representative David Leigh collected £1,000 raised from Paul Padmore’s workplace charity day.
• Alison Howells sent in a donation of £398.63 raised by the national citizenship scheme in the Crewe and Nantwich area.
• Gymaphobics employees sent in £115 following the death of Nantwich member Pam Elvy.
• Weleda Products employees organised a pamper event and raised £125.60.
Wendy and Robert raised a further £390 through their Someone Special page in memory of their son.
Elaine, Michelle, Hayley, Fiona and Danielle took part in The Wolf Run and raised £120.
• Dr David Lowe donated £203.79 in respect of a royalty payment from his books.
• Julie and Chris Smith organised a curry night and live entertainment evening at the Silk Route and raised £835:
“This was raised at the Silk Route following soul and motown tribute act A-Kay. This was a curry night and live entertainment evening. A great big thank you to Ali and his team for all the fantastic food, and a big thank you to the Heartfelt Group for their support on the night with the
“We are a small group of mums and family members who have all been affected by the sudden deaths of our beloved children. We come together to support each other and to fundraise, to be able to offer free screenings in the Preston area. These can prevent other families suffering the same loss as us. One of our members, Julie, joined us after her son was picked up at one of our screenings a few for screenings. They have both raised a lot of awareness through publicity surrounding some of the charity events they have organised.
“All the money we raise is directed straight into two ringfenced memorial funds and used solely for screenings. These accounts are in the names of Andrew Parr and
Stevie Wiggins, but money raised is in memory of all our sons: Andrew Coles, Andrew Parr, David Quinney, Stephen Gregory, Stevie Wiggins and Stuart Cave.
“Last year we held a curry night, a table top sale, a market stall, and had a Christmas concert featuring the South Ribble Concert Band.
“This year we have had another curry night with a motown and soul artist which was very well supported, and we have a few things in the pipeline for the rest of the year, including two screening days.
“We are passionate about raising funds and awareness, as well as offering support to each other. If you are reading this and have been affected yourself, we would love to meet you.
“Come and join our little group; we meet for coffee and searching for Heartfelt. It’s nice to be in the company of people who have walked in your shoes and feel the way you do.”
Sonal Patel sent in £100 in memory of her husband, Divyen.
• Patricia Toft forwarded a donation of £300 raised by Kevin’s father, John Paterson, though a showcase/talent night.
• Zoe Green took part in the Great Birmingham Half Marathon and raised £150.
• Joan and Stuart and Kiera Kilagarriff sent in £300 raised from holding a tombola at a recent screening event.
• Fullwood Leisure Centre organised a world record attempt and raised £1,182.90.
• Peter Patterson forwarded donations totalling £665, including: £365 from Campion Old Boys Rugby Club raised from closest friends.
• Peter Patterson sent in £100 raised as follows: a premium bond prize donation of £75, and a further donation of £25 from Mrs K Smith.
• Gordon Paul forwarded a donation of £40,000 from Hibernian footballer Lewis Stevenson, in respect of his testimonial year, in memory of Jenni and David.
• Paul Ewing sent in £150.
• Ivan Hua completed the Three Peaks Challenge and raised £200.
• Conor O’Boyle completed the Three Peaks Challenge and raised £700.
• Sue Wyborn raised £4,467.20 through her Someone Special page in memory of her son.
Jordan Essex organised a company-wide UK Ltd and raised £598.23.
Karen Pearmine forwarded a donation of £300 raised by Jackie Cook through taking part in the London Winter Walk.
• Loretta Pettifer sent in a further £175.50 raised from her Someone Special page throughout 2017.
• Ravi Patel sent in £100.
Dale Clark sent in £200 in lieu of gifts to celebrate his 40th birthday in memory of his cousin.
• Terry Maycey sent in a total of £150 in appreciation of the screening of his two daughters.
• Sophie Kelly sent in £155.
Helena, Stephen, Michael and Richard sent in £100.
Roger and Lesley Pope sent in £110 raised by the customers of The Thatched Inn, Hassocks, in memory of their son.
Northwood College for Girls organised a halloween carnival and raised £424.98.
Diane Tolley sent in £115 raised as follows: £45 from the Old School House Garage, Ombersley, Worcestershire; and £70 from The Horn & Trumpet, Bewdley, Worcestershire.
Glen’s All Stars sent in £4,938.72 raised through running the Maastrichts Mooiste:
“On 9th June 2013, 45 friends and family of Glen Ralston ran Maastricht’s Mooiste in our home town of Maastricht, Netherlands, in memory of Glen, who died suddenly 10 years ago of a cardiac condition – most likely Brugada syndrome – at the age of 34.
“We chose a joyful event – Maastricht’s Mooiste – and we had great fun! Our team was spread over three run distances – 5km, 10km and 15km – and everyone achieved great results. We also wore our team t-shirt. We really glued together as a group and we promoted the two charities we supported: CRY and Nederlandse Hartstichting.
“Together the team ran 457 km (including one member who ran in Sweden to raise money for our charities) in 41 hours 12 minutes. The cherry on the cake came when one of our group won the 15km race! This was Nick Raymaekers, with a time of 49 minutes 54 seconds. He surely made us proud, although in reality we didn’t have much to do with his training and dedication to running; but on Sunday he was one of our stars.
“Such a sense of achievement… for those who never really ran before… for those who challenged themselves to a longer distance than the usual park run… for those who achieved their personal bests… for our 7-month pregnant Carol who walked the 5k race.
“Being there and wearing our Glen’s green t-shirts made us all rejoice in each other’s small victories, as we cheered and supported one another. So far we have raised €7,850 for our two chosen charities, but we hope that the results of such a committed group will inspire people to join us in the future.” Carol and Claudia.
Emma Greensted raised £369.93 through her MuchLoved page.
Kay Rawlinson sent in £5,095.
Sean Reading raised a further £6,857.62 through his Someone Special page throughout 2017.
• Kiveton Park Medical Practice sent in £636.80.
• Kiveton Park Medical Practice sent in a further £738.80.
• Rosalyn Barber took part in the York Corporate Marathon and raised £1,068.
• Jeremy Turner sent in £100.
• Heather Reid sent in £20,213.64 raised by organising Strictly Dancing for CRY in memory of her daughter:
Strictly Dancing For CRY event held at City Limits Dance in memory of our lovely daughter, Alex, who died aged 16 of a sudden cardiac arrhythmia whilst sleeping. Also taking part was Sally Smith, who danced in loving memory of her late husband, Lee Smith, who died suddenly from a previously undiagnosed heart condition, aged just 31.
“This is a fantastic amount raised thanks to the dedication of the dancers and teachers, and the generosity of family and friends. The evening was a real spectacle, with the glitterball trophy lifted by worthy winners Bill Thornton and Helen Fidler.
“The money raised will go to fund a project headed up by Dr Joyee Basu, a CRY Research Fellow based at St attend the event. The Alex Reid and Lee Smith Memorial Funds will also continue to fund cardiac screenings for young people aged 14-35 years. So, please watch this space for the next screenings or go to testmyheart.org.uk.
“Thank you so much once again to all involved – we are truly grateful for your support!”
Oliver King raised a further £2,603 on his Someone Special page throughout 2017.
• Adam Butcher took part in the Langport Triathlon and raised £370.
• Lindsey Pearse sent in £200 raised at the East Coker Christian Fellowship quiz night.
• Natalie Burton took part in the South Coast Challenge and raised £565.
• Sylvia Pezzack sent in £229.10 raised as follows: £129.10 from Cornwall Rowing Association (the Debbie Rendle Memorial Row), and £100 from 50th wedding anniversary donations.
• Mr and Mrs Stevens sent in £250.
• Sarah-Jane Ridgley sent in a further £278.46 raised through car air freshener sales in memory of her husband.
• Sarah-Jane Ridgley sent in £250 raised by Steve’s friends, Michael Johnson and Zak Williamson of Zewspeed, who had t-shirts made.
• Alan Hathaway sent in a donation of £200 on behalf of Discovery Research.
• Marissa Rodney sent in £1,268.
Terry Roddy sent in a Christmas donation of £150 in memory of his daughter.
Kier Roger took part in the Cancer Research UK London Winter Run and raised £877.09.
Amy Thornley raised £711.25 from the Great North Run 2017.
Caron Coates sent in £570 raised from the celebration of Jan and Cyril Hoof’s 50th wedding anniversary:
“On 17th February 2018, a party was held to celebrate the 50th wedding anniversary of Jan and Cyril Hoof. They have been friends for many years and knew Danielle well. They asked for donations to CRY instead of presents and in total £570 was raised. Thank you Jan and Cyril for your amazingly kind gesture.” Caron Coates.
Ian Rutter sent in £100.
Karen Salem sent in £1,850 raised through her Someone Special page throughtout 2017.
• Lady Lumley’s School organised a non-uniform day and raised £388.43.
• Sara Gamble raised £390 from the Great North Run 2017.
• Elaine Otterburn took part in the Dirty Hero event and raised £811.
Tom Stanford sent in £1,015 raised through his Someone Special page.
Elaine Ward sent in £500 on behalf of neighbour Tim Searle, raised in lieu of funeral donations.
Doreen and Kenny sent in a further £680 through their fundraising page throughout 2017.
Vicky Porritt raised £510 through her JustGiving page in memory of her daughter.
Elizabeth Sheriff sent in £109.83 raised from collection boxes.
• Coolings Nurseries held a Christmas
• Mike and Tina Baker at Unicorn Primary School sent in a total of £450 raised as follows: £250 in donations, and £200 raised by West Kent Provincial Grand Stewards Lodge 8565.
• West Kent Provincial Grand Stewards Lodge 8565 sent in a matched fund donation of £200 in respect of Mike and Tina’s fundraising efforts.
Anne Siddall and team took part in the Great North Run 2017 and raised £2,715.
Colin Simpson sent in a Christmas donation of £100.
Kate Spencer Ellis sent in £895 from Forest School raised through their annual ‘Fusion’ show and a sixth form collection by Zoe Kundu.
• Christine and Gary sent in £117 raised Altrincham Leisure Centre.
• Elaine and Team Soreen took part in the Samworth Brothers Charity Challenge and raised £6,409.16.
• Sean, Yousif and Leo took part in a Rickshaw Challenge and raised £470.
Caroline and Mike raised £2,250 through their MuchLoved page in memory of their son.
• Howdens Joinery Co. sent in a matched donation of £500 in respect of Sally and Leon’s participation in Strictly Dancing for CRY.
• Sally Smith raised £573 through her Someone Special page.
• Linda Smith raised a further £273.67 from her Someone Special page throughout 2017.
• Linda Smith sent in donations totalling £905 raised as follows: £875 from Hetton Haws Cycling Club, and £30 from Friends of Langley Park Primary School.
Marco and Fabio completed a skydive and raised £355.
Mark Tidmarsh completed a cycle of the Japanese Alps and raised £310.
Darwen Dashers organised the annual David Staff Memorial Fell Race and raised £520.
• Rachel and Dan Lewis took part in a Tough Mudder and raised £215.
• Adrian and Debra raised £10,779.30 throughout 2017 in memory of their son.
Jilly-Jo and Rachael took part in the Rough Runner Bristol and raised £280.
Paul Hughes sent in £1,000 raised from various fundraising events at the Bird in Hand pub.
Mr and Mrs Starrett sent in £100 in lieu of sending Christmas cards.
Sue Steele raised £173 from her birthday celebrations.
Laura Stephen raised £12,910.46 through her JustGiving page in memory of her brother.
Karen and Scott Cowie sent in a further £500 through taking part in the China Open Trek 2017.
Mary Stiller raised a further £133 throughout 2017 from her Someone Special page.
Chris Ward took part in the 100th Giro D’Italia and raised £325.
Jason Duffy took part in the Leeds 10k and raised £135.
• Rosie Taylor set up a Facebook fundraising page and raised £205.
• Chloe Stott sent in £125 in respect of donated wine at her wedding.
Janet Cock sent in £100 from the Caledonian Society of Colchester.
Gemma Bolton raised £528 through her Someone Special page throughout 2017.
Sarah Walley sent in £219.76 representing donations
Beryl Ewing sent in £200 raised from the sale of handmade cards in memory of her daughter.
Rita Wildman sent in £250 representing donations
• Angela Tennent-Butler sent in £450 in memory of her son raised as follows: £300 from an Inspired Personal Health & Fitness Santa Run, and £150 from Skanska Infrastructure Development.
• Angela Tennent-Butler sent in £330 raised by Inspired Kitchen through donating their tips from a catering event.
June Thomas sent in £9,796.59 raised as follows: £3,000 from the Freemason’s Grand Charity; £3,073.42 from a masquerade ball, including a £500 donation from Blackwood Round Table; £500 from David and Jane Norris (London Open Taekwondo Championships); £100 from Ferryman Limited; £300.04 from Cross Oak Inn collection pots; £261.74 from Asda Blackwood collection pots; £346.99 from Asda Brynmawr collection pots; £26.31 from M&M Appliance Repairs collection pots; £10 from Allan Cooper (Jack’s grandad); £20 from Vicky Styles (Jack’s aunt); £30 from Bobby and Elaine Duncan; £275.17 from Bob and Hilary Stebbings’ 50th wedding anniversary; £445.62 from Karen James’s sale of arts and crafts; £577.50 from a Mediumship evening; £333.18 from screening donations; £133.23 from collection pots at Betty’s Boutique; £180 from Oakdale Choir; and £49.15 from a collection pot at Unique Health and Fitness Gym, Blackwood.
Mrs L Elliott sent in £116.25 representing donations
Graham and Cheryle sent in £125 in memory of their son.
Kieran Thomson took part in a head and beard shave and raised £132.
• Tim Peters took part in the London to Brighton Cycle and raised £2,174.
• Mike French-Lynch took part in the Great North Swim and raised £145.
• Jane Tiplady sent in £100 in memory of her son.
• Beth, Eve and Annie McConnell hosted a live music event and raised £943.50.
Graham Warley sent in £100 as a thank you to Michael Whittingdale, Olly’s uncle, who gave free will advice.
• Della Tudisca sent in £1,268 raised as follows: £500 from Echo Football League; £250 from Abigail and Sean Kelly in lieu of presents to celebrate their birthdays, collected by Rosie and Caitlin; £468 from the
Southwest Essex Federation of Townswomen Guild; and £50 from AJS Blinds.
• Leo and Della Tudisca sent in a further £430 in memory of their daughter.
• Shamblers sent in £200.
Sophie Palmer raised £602 from the Great North Run 2017.
• Fiona Waddell sent in £5,940.51 raised by Swim Trafford.
• Altrincham Grammar School for Girls held a Christmas jumper day and raised £474 in memory of their former student.
• Jonathon Robinson sent in £400.
• Andy Rossi completed the Timperley to Morecambe cycle and raised £230.
• Fiona Waddell sent in £320 from Mott MacDonald Altrincham Sports and Social Club in relation to fundraising by Timperley Boneshakers:
“On the weekend of 23rd and 24th September 2017, over 30 cyclists from Timperley Boneshakers cycled to Morecombe and back. This was organised by Ian Elliot
to raise funds in memory of Chloe Waddell, who died suddenly of an undiagnosed heart defect in February 2013 at the age of 16.
“Chloe’s mum, Fiona, and sister, Holly, both cycled whilst dad, David, supported the cyclists as a driver.
“Everyone set off early on Saturday morning from Timperley and chose to cycle either 85, 100 or 120 miles to Morecombe.
“The weather was kind to us and we had a great day cycling. We stayed over in Morecombe before setting off for the shorter 70-mile return ride to Manchester.
“All of the monies raised will go towards heart screenings in the local area. Thanks to everyone who made this weekend such a success.” Fiona Waddell.
memory of his father, Raymond.
• Janice Sells sent in £350 from the Ise Lodge Ospreys YFC.
• Paula Sinnott took part in the Great Eastern Half Marathon and raised £459.
• Paula Sinnott took part in the Great Eastern Peterborough Half Marathon and raised £110.
• EMLC Academy Trust, Prince William School, sent in £600.90.
• Marc Hudson sent in £525 raised as follows: £405 from an online football memorabillia auction; £20 from a Katie Page donation; and £100 from the Hudson family in lieu of Christmas cards.
• Clive took part in a Kilimanjaro trek and raised £8,703.36.
• Liz Mitchell sent in £1,514 raised at the Mr. Traumatik charity event.
Steven and Lesley Wallbank sent in Christmas donations of £115, donated by grandparents, parents and good friends, in memory of their son.
• Elaine and Ian sent in £407.54 raised as follows: £108 from Joan Rowland (WI Coordinator) in lieu of Christmas cards;
and £179.54 from South Yorkshire Federation of Women’s Institutes’ carol service.
• Elaine Ward sent in £1,847 raised as follows: £500 from The Barnabas Charitable Trust; £100 from David
the Monyash WI, in respect of her talks; £100 raised through giving talks to various groups; £767 from a Singers; £40 from an Alfreton WI talk; and £30 from Alfreton WI Donations.
• Chris Hyde took part in the 5,546m Everest climb and raised £190.
Stephen Wardle sent in £250 in memory of his son.
• Jess Curley took part in Dry January and raised £100.
• Avis Budget Group sent in a matched fund donation of £500 in respect of Marie Watson’s fundraising evening in November.
• Marie Watson raised £5,955.70 through her JustGiving page in memory of her son.
• Ash Canavan raised £1,687 from the Great North Run 2017.
• DHL UK Foundation sent in £600 in respect of monies raised by Steve Richards at his music night.
Steven Wedge sent in £398 representing donations
Colne Lodge 4402 sent in £202 raised at their December Christmas lodge dinner.
Mrs P Whitbread-Roberts sent in £190.35 received in lieu
Jon Boast raised £1,505 through his Someone Special page throughout 2017.
Mark and Megan Wibberley sent in screening donations totalling £450 in memory of their son.
Irene Wickers sent in £3,700, including: £2,800 from The WM and BW Lloyd Trust; £500 from the Rotary Club; £83 from Academy; £130 from Ewood Dress Agency; and a personal donation of £187.
• Simon Mulholland raised £775 from a cycle from Kendal to Shrewsbury.
• Sheila Wiggins sent in £760 raised as follows: £260 from two market stalls, and £500 from a South Ribble concert:
“The concert was given by South Ribble Concert Band, who donated their service free. The event was held in Leyland Methodist Church, whose minister was very active in making sure all went well.
“We are very grateful to the band and also to the minister for their support of CRY.
“There was a variety of music played, together with Christmas carols for audience participation. Refreshments were served and it was a very lovely and enjoyable
• Helen McNiven sent in £200 raised from the sale of driftwood angels.
• Annika and Camilla Ratcliffe raised £1,440 from the Great North Run 2017.
evening. All in all it is good to be donating £760 for the three events held.” Sheila Wiggins.
• Emma Steers raised a further £373.70 through her Someone Special page throughout 2017.
• Emma Steers organised a memorial weekend and raised £815.
James Vyvyan forwarded a donation of £150 raised by his children picking daffodils on their grandfather’s farm, which were sold at James’s work.
Wendy Williams sent in £330 from the staff and children of Laleham Church playgroup.
Mrs Williamson sent in £112.60 representing donations received in lieu grandmother, Barbara Hennessey.
Carole Wilson sent in £700 raised at a coffee morning and at the Lions Club, Lodge of St Andrews.
Gill Horn organised a tennis tournament at Broxbourne Tennis Club and raised £310 in memory of her son:
“Another year has passed by and Broxbourne Tennis Club have once again held a tennis tournament in James’s memory, with all proceeds going to CRY.
“This year, the club held their parent and child event on Friday 1 December. It was at 6pm as the parents arrived home from work.
“The temperature had dropped drastically that week and yet the competition still went ahead in almost freezing conditions.
“Matt and Connor Kirby were the jubilant winners of the tournament.
“I’m delighted to say that 26 couples braved the conditions to join in the activity. So much fun was had on such an extremely cold and dark evening. It was a pleasure to be part of such a lovely event and the club raised £310.
“We lost James 15 years ago now and the club has held a tournament ever since, to raise awareness of CRY and to keep James’s memory alive.”
• Annabelle Woodward raised a further £452.60 through her Someone Special page in memory of her sister.
• Tim Gilbert sent in £100 in respect of pro bono work he carried out.
Rachel Mclean sent in a total of £300 raised through her daughter Lorna’s Classical Spring Evening concert.
Oliver Barron completed the Arran Challenge 2017 and raised £5,483.
• Alexander Ford sent in £250 in lieu of sending Christmas cards.
• Elizabeth Morris sent in £100 on behalf of Team FK.
• Dani West sent in £5,500 from Toyota Manufacturing UK.
• Elaine and Kevin sent in donations totalling £520 in respect of a recent screening in memory of their son.
Hugh and Pam Foster organised a charity day and raised £2,000.
• Advance Investments chose CRY as their Charity of the Year for 2017 and raised £1,190.
• Amy, Rebecca, Charlotte, Amy, Jessica, Laura, Gemma and Kristina raised a further £208 in respect of obstacle run.
• Andrew and Scott took part in Baxter’s Loch Ness Marathon and raised £260.
• Antiochian Orthodox Society of Britain sent in £150.
• Atlantic Container Line UK Ltd donated £100 after CRY was suggested by employee Tracy O’Brien.
• Altrincham Preparatory School sent in £185 raised through Alexander House running a stall at their Christmas fair.
• Mark Austin sent in £100 in appreciation of a recent screening.
• Mrs Baird sent in £100.
• Barclays Bank sent in a matched fund donation of £316.63 in respect of the INTU Christmas wrapping event.
• Beefy’s Charity Foundation donated £20,000.
• Natasha Blanche sent in £613 raised from a Surgery.
• Mike Bracken sent in £2,400 raised through the Brethren of United Engineers Lodge No 3862’s charity dinner.
• Lynn Brannan sent in £268.53 raised from a bag pack.
• Louise Brodie sent in £107 raised from a ‘casual day’ at Essex & Suffolk Water.
• Spencer Buttle took part in the Hull 10k and raised £1,011.05.
• Laura Calvin sent in £500 on behalf of the Ulster Bank staff charity fund, Northern Ireland.
• Cambrian Fuelcard Services Ltd sent in £250.
• Rory Canavan raised £375 from the Great North Run 2017.
• Sue and Chris Cassidy sent in £379 collected at the Kays Theatre Group performance of Aladdin at the Swan Centre in Worcester.
• Cassiobury Evening Townswomen’s Guild sent in £335 raised by holding a few afternoon tea parties.
• Jim Chalmers organised his one million metre indoor rowing challenge and raised £1,197.50.
• Chris and Max sent in a further £530 raised through their Tide Together Ocean Challenge.
• Christian and Andy took part in running the Lyke Wake Walk and raised £605.
• Elaine Cole sent in £100 in respect of the “Free Wills Month” sevice provided by Michael Whittingdale.
• CRY Representative Martin Collins sent in £1,004.26 raised by the Northern Ireland Fire & Rescue Service Cadets through various fundraising events.
• Clare Connolly sent in £1,048.37 raised through tombolas and other fundraising events at Barclays’ Sunderland Contact Centre.
• Contract Natural Gas sent in £320.13.
• Daryl Cook sent in £293.50.
• The Co-Operative Group Ltd sent in donations totalling £859.97.
• Copford C of E Primary School sent in £159.61.
• Leanne Cornelius took part in the Edinburgh Kiltwalk and raised £284.54.
• Diane Crisp donated £450.
• Matt Currie and Justin Savage took part in the Race2Berlin event and raised £555.75.
• Lorna Dane sent in £250 from The Dane Partnership.
• Alex Dean took part in the Hever Castle Triathlon and raised £2,511.
• Rob and Caron Dubery took part in the Prudential RideLondon-Surrey 100 2017 and raised a total of £307.
• Robyn Dyson and his team swam the English Channel and raised £1,480:
swimmers boarded the Louise Jane, piloted by Andy and James King, and started our channel relay. Ray was our was starting to break. He swam to the shore, stood above the sea level and waved, just as the clock started for our big channel swim.
“Five minutes before his hour was up, Cate got ready and
sat on the edge of the boat ready to jump in. Andy, the waves coming from every direction with no real form, but despite this she covered a good distance and kept her head down.
“In the third hour, Andrea did a very fast swim and took us up to the northern shipping lane. After Andrea it was my turn. I’d been jumping up and down, excited to get in and do my hour. I had a good swim and got us through the northern shipping lane. Rob was next in and covered
She swam brilliantly and got us past half way and into ‘no man’s land’ – this is the area where you aren’t connected to French or English telecoms, you are very much on your own and just thinking about how far out you are and how deep the water is. It really is amazing.
had a long way to go. We then started the whole order again and Ray, Cate, Andrea, me and Rob all completed our second swim. No one knew whether our last swimmer, Sarah, would get the privilege of landing or whether Ray
against the waves, Sarah swam the penultimate hour
onto the slipway at Cap Gris Nez. After 12 hours and 34 minutes, Team Yorkshire Swimmers landed in France.” Robyn Dyson.
• Tony Eames completed the Million Metre Challenge and raised £702.50.
• Laura Evans sent in £255 raised from her birthday celebrations.
• Farnborough Hill School pupils raised £71.80.
• Brandon Finch completed a skydive and raised £975.
• Caragh Finnan sent in £374.37 raised from Easter fundraising events, including a dress-down day, a
• Garstang Quakers, Meeting of the Religious Society of Friends, sent in £100.
• Natalie Glanvill sent in £150 from DMG Media Finance Services.
• Glencore Commodities Ltd sent in £10,000 raised in
• Great Academies Education Trust sent in £4,001.87 raised through their fundraising activities.
• Nick Greenland forwarded a donation of £1,000 from Woodward & Co.
• Alexander Halliday sent in a further donation of £500.
• Harris Academy donated £100.
• Hart Swimming Club sent in £863 raised from their Channel Challenge.
• Help Point Team sent in £197.92.
• Heather Henderson sent in £200 on behalf of Emma Henderson, who organised a fundraising event at Leander Swimming Club in Belfast.
• Jack Hillcox and friends completed the Charterhouse 50 Mile Walk dressed as The Village People and raised £1,235.
• Staff at HMRC Debt Management, Kidsgrove, held an
• Andy Holmes and Simon McKee organised a football match at Kings Langley FC and raised £569:
“The charity game was won, quite comfortably, by Herts the ones in black, who are smiling slightly more than the Bucks lads in Green!” Andy Holmes.
• Andrew Imms took part in the 110km Ultimate Trails Challenge and raised £620.09.
• James Hambro & Partners LLP sent in £1,450.
• CRY Representative David Jewell collected a donation of £335.75 raised from fundraising activities at the Adult Learning Alliance at North Tyneside Council.
• Rachel Jones organised a charity evening and raised £135.
• Halima Khanom sent in £410.26 raised from the University of Birmingham ChemSoc’s Chem Week.
• Eleanor Kortland sent in £100.
• Lady Manners School sent in £1,503.63 raised from their Year 10 interform dodgeball competition.
• Paul Lane raised £555 from the Great North Run 2017.
• Mary Lefteris sent in £375 on behalf of The Greek Women’s Philanthropic Association.
• Clive Lemmon sent in £126.50 representing the proceeds of a collection taken at the wedding of Marc
Finlay and Olivia Good on 7th April 2018.
• Anne-Marie Lewis took part in the Wales Marathon and raised £160.
• Sarah Lindsley sent in £100 in lieu of gifts to celebrate the recent wedding of her brother, Tom O’Flaherty.
• The Lodge of Candour L7663 sent in £500.
• Andrew Lucas sent in £1,511.16 raised by Grey College JCR through their Valentine’s Formal.
• CRY Representative Roger Maddams collected a £139.30 cheque, raised by Monica through organising a concert at St Peter’s Church.
• Nina Mammatt sent in £200 raised through winnings from a quiz at Saundersfoot Sailing Club.
• Lisa McCullough sent in £2,050 from Ulster Bank.
• Lisa McCullough at Ulster Bank sent in £461.93 in respect of a screening in Northern Ireland.
• Millie McKelvey sent in £450 in respect of her talk at Marlborough College.
• Merseyside Police donated £645.
• Middlesbrough and Stockton Mind sent in £136.06.
• Chris Morling at Dot Zinc Ltd sent in £5,000 after CRY was nominated by Ben Ullmer.
• Clair Morton-Fincham sent in £234 raised from a
• Sally Murgatroyd sent in £200 raised by The Gildersome Singers’ recent concert.
• Nantwich Young Farmers Club sent in £245 raised through singing Christmas carols in the local community.
• Brett Oakton sent in £115 raised from a Valentine’s
• Olli and Glesni took part in the Yorkshire Warrior and raised £287.50.
• Jackie Padley organised a netball tournament and raised a total of £876.90:
“Well done to all the teams who took part in a charity netball tournament in South Shields on 25th November.
“14 teams entered from across the North East, including mixed teams and ‘Back to Netball’ teams.
between Gateshead Stadium and Property Mixed. It was post. Well done to each and everyone who took part.”
• Leena Peshawaria sent in £301 raised from Dollis Infant School’s Have a Heart Day.
• John Pickering raised £400 from the Great North Run 2017.
• Polly and William took part in a Mount Kilimanjaro trek and raised £2,590.
• Christmas and raised £512. Premier Oil’s charity committee matched the donation.
• Trevor Price sent in £225 collected by friends and colleagues and given to him on leaving Saacke Combustion Service Ltd.
• Rae-Lei Prince took part in a Ride for Life and raised £1,882.50.
• Robert and Joan Probert sent in a total of £102.50 raised from donations at their golden wedding anniversary.
• Mr Pujara organised a dosti dinner and dance fundraiser and raised £3,240.31.
• Mark Radford took part in the Ironman 70.3 Weymouth and raised £540.
• RBS Global Finance Services donated £300.
• Club in respect of Jack Egan participating in a 5km challenge.
• Claire Rodgers forwarded a donation of £104.50 raised by Jenkin House at Taunton School.
• Tony Roome sent in £100 from Leyton Orient Supporters Club.
• Rotary Club of Brewood & District sent in £300.
• The Round Table Lodge of Norfolk (No 8600) sent in
• Emma Ryan took part in Man vs Lake and raised £380.
• Samuel and Team Evo took part in a Tough Mudder Yorkshire and raised £520.
• Liz Saraiva sent in £700 raised by the members of Selwyn College JCR.
• Savoo Ltd sent in £100. •
Portrait Awards. •
• and raised £310.
• Economics in lieu of sending Christmas cards to clients.
• Emma Smith raised £719 from the Great North Run 2017.
• Sport and Active Lifestyle, University of Chester, sent in £104.06 raised from the Warrington Fitness Suite 24 hour charity football match.
• Andy Stacey sent in £500 in respect of his Paris to Cannes cycle.
• Ryan Stevens took part in Movember and had a full body wax and raised £275.
• Mary Stevenson sent in £100 in lieu of gifts to celebrate the recent marriage of her friends, Tom and Alex.
• Katie Stevenson and Barry Rimmer sent in a total of £278.16 raised through various fundraising througout 2017.
• Tony Stilling took part in a cycle from Tynemouth to Amble as part of Harry’s Jelly Walk and raised a further £270.01.
• St Peter in the Forest Church, Walthamstow, made CRY one of their chosen charities and donated £230.
• Marcel Strangmueller sent in £102 raised through a bake sale and a take-me-out event by the basketball team at Queen Margaret University in Edinburgh.
• Pamela Stronger and Kim Fuller raised £834.10 from the Great North Run 2017.
• The Student Finance Wales Charity Team sent in £318.65 raised from several Christmas jumper days hamper.
• Suzanne Sumsion sent in £100 in recognition of her children being screened by CRY.
• Stephanie Taylor completed the Yorkshire Three Peaks and raised £143.
• The Thomas Alleyne Academy sent in donations totalling £494.
• Sharon Timmons sent in £300 raised from a
• James Tomlinson took part in the Fan Dance and
raised £575.30.
• Alex Tough sent in £538.33.
• Tudor Capital Europe LLP sent in a matched fund donation of £293.50 in respect of employee Daryl Cook’s recent fundraising efforts.
• Sara Turkington sent in £960.
• Turtle Tots, South West Wales, sent in £361.70.
• Uxbridge College held various fundraising activities and raised £4,769.86.
• Ladies Captain Sue Waite forwarded a donation of £750 raised by fundraising activities at Chigwell Indoor Bowling Club.
• Waitrose in Leatherhead sent in £250 raised from their Community Matters scheme.
• Paul Walsh sent in £100 in appreciation of a CRY screening his son received.
• Lucy Wasinski took part in the Dig Deep Intro 30 Mile Ultramarathon and raised £225.
• Yvonne Waterhouse sent in £100 from the West Yorkshire Cross Country League.
• Mark Webster sent in £500 in appreciation of CRY’s screening programme.
• Susan Wheatcroft took part in the Jedi Academy Rebel Run and raised £475.
• Ms White sent in £287.65 raised as follows: £67.60 from a 12-hour netball event, and £220.05 from a bake sale.
• Adam Williams sent in £357.39 raised from the Hazelveare House Boys charity pizza evening at Lord Wandsworth College.
• Rebecca Williams forwarded a donation of £1,000 on behalf of Samsung Electronics UK Ltd.
• Louisa Wilson took part in the Chester Marathon and raised £822.20.
• Helen Winn raised £467 from the Great North Run 2017 in memory of Janice.
• Susan Young sent in £204.70 raised through North Tyneside’s ‘wear red day’.
The 9th annual CRY Durham Walk offers the opportunity to show support for CRY, remember young people and help raise awareness of young sudden cardiac death. We are immensely grateful to the families, some of whom take part every year.
Not at all. Many people take part on their own. Individuals to meet others who are walking on their own. If you would like to take part as a team, why not get a group of friends, colleagues or family together?
Saturday 6th October at 11:00am. Participants can arrive from 9:30am. The route goes through Durham City Centre and is approximately 8 km/5 miles long. The walk starts the option of a shorter wheelchair-friendly route.
Durham is a beautiful and fascinating city, so why not make a weekend of it? We recommend booking accommodation as soon as possible. Drinks will be available at the start and at the water station at Durham Market Place. T-shirts will be provided to walkers in advance.
Advanced registration is £12 for adults, and £15 on the day. Children 16 and under are free, but must be accompanied by an adult.
Please call the fundraising team on 01737 363222 or email events@c-r-y.org.uk.
Your entry fee goes towards the cost of running the event safely. There is no obligation to fundraise but we are very grateful for any donations or sponsorship raised.
If you’d like to set-up your own fundraising page you can do
We are always looking for volunteers to help with this event. Without them we simply would not be able to hold the walk. email volunteering@c-r-y.org.uk.
If you would like to promote the walk, whether you are able to attend or not, please email volunteering@c-r-y.org.uk for more information.
Between January and April CRY featured in 221 print articles, including 6 national articles and 18 magazine articles. CRY also featured in 192 online articles
‘Hibs star donates £40k to charity in memory of starlet David Paul’
Edinburgh Evening News
Scottish footballer Lewis Stevenson has donated £40,000 raised from his testimonial year to CRY in memory of under-20s player David Paul.
Published 15 February 2018
‘Harris Academy head girl earns praise for cardiac campaign’
The Dundee Courier
Abby Lang has received high praise from Perthshire North MSP John Swinney for her work to rally the support of MPs and raise awareness of CRY.
Published 22 March 2018
‘Brother of dead Scots marathon runner issues safety warning’
The Scotsman
The brother of David Seath, who died while running the London Marathon in 2016, has recommended that runners are referred to CRY for screening in an effort to prevent more deaths in the future.
Published 24 April 2018
Online...
for which a transplant is the only cure’
The Mail on Sunday, 14 February 2018
Charlotte Carney was diagnosed with restrictive cardiomyopathy at a CRY screening.
‘Remembering Ray Wilkins: Chelsea and Manchester United legend who was known as “one of the nicest men in the game”’
Mirror, 4 April 2018
CRY Patron and footballing legend Ray Wilkins who died in April aged 61.
‘Mother who lost her sport-mad son to sudden adult death syndrome at 28 reveals how she tried in vain to revive him’
The Mail on Sunday, 12 April 2018
Sue Hughes discussed losing her son, Daniel, and how her family have supported CRY and raised £153,000 in his memory.
For links to online, press, television and radio coverage related to CRY and young sudden cardiac death visit
Please contact the fundraising team on 01737 363222 or email events@c-r-y.org.uk if you are interested in any of the following events. For more information and a full list of events visit All participants in mass-participation events who contact the CRY fundraising team (whether they have their own place or a CRY charity place) will receive a welcome pack containing sponsor forms, information, helpful tips and either a T-shirt or vest (depending on the type of event).
Assorted dates
Skydives
Continuous
July-October
The Spartan Race series integrates obstacles with natural terrain to create the best racing experience possible. There are three levels of adult races, as well as a range just for children.
July-October
Rough Runner is an obstacle course like no other; combining distance running (there’s a 5km, 10km and 15km run) with a variety of obstacles, inspired by game shows such as Total Wipeout, Takeshi’s Castle, Gladiators, and Fun House.
September 8-9
The Thames Path Challenge features beautiful scenery and a superb backdrop for a festival of river-side challenges with three unique events you can join.
September 9
The Great North Run is the world’s leading half marathon. The course runs from Newcastle upon Tyne to South Shields and attracts many world-class athletes.
September 12-16
Starting in London, the 4 days of cycling will take you through beautiful villages, and allow you to see some of the most famous landmarks in England and
France. And after 4 days of pedalling your bike, you can then enjoy a day in Paris doing whatever you please!
September 16
The Do it for Charity London to Brighton Cycle Ride is a mass-participation, 54mile cycle ride from Clapham Common in London to Madeira Drive on Brighton sea front. Over 4,000 cyclists are expected to take part in this year’s iconic ride.
Chilterns 50K challenge
September 29
Take on 50km in this area of outstanding natural beauty – along sections of the Ridgeway, Icknield Way Trail, and Chiltern Way. Walk, jog, or run it with 1,500 others, then soak up the finish line festival style celebrations and evening hospitality – with camping options too.
CRY Heart of Durham Walk
October 6
The 5-mile route starts and ends at Durham Amateur Rowing Club and passes along the River Wear and through the beautiful city of Durham. The walk is suitable for all.
October 7
This stunning central London half marathon takes in the capital’s worldfamous landmarks on closed roads, and four of London’s eight Royal Parks – Hyde Park, The Green Park, St James’s Park and Kensington Gardens.
October 27
Trick or treat yourself to this 15km themed walk in London. Show us your best outfits and join in! Gather a team or
go alone and meet like-minded walkers.
October 18-28
This enchanting cycle explores the cities, royal palaces, dazzling green paddy fields and temples of the Mekong Delta before finishing at Angkor Wat.
November 17-25
Help CRY by holding your own fundraising or awareness event. This is a perfect opportunity to promote the importance of the charity and cardiac screening for young people. All events are welcome!
November 23
This is a fun and simple way to get involved in Raising Awareness Week. Get your family, friends, colleagues and children involved in baking, eating, and raising money for CRY. Compete to see who will create this year’s showstopper!
November 16-27
Trekking via jaw-dropping lakes and glaciers on this magnificent challenge, you will also hike along ice-capped cliffs and mountains, forests and grasslands. Camping in spectacular locations, you will be able to appreciate the beauty of Patagonia on this epic adventure.
December 26-January 4
Trek towards the snow-capped peaks and observe the natural beauty of the Tanzanian landscape. You’ll be trekking through a blend of diverse terrains, from jungle to volcanic craters, before reaching the highest point of Mount Kilimanjaro, Uhuru Peak.
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 fundraising-challenge-events for more information or contact the CRY
The urgency of CRY’s mission and the quality of our work has compelled
For more information visit
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 01737 363222 or visit
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 OBE
• Emily Maitlis
• Lawrence Okoye
• Vincent Regan
• 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;
01737 363222
cry@c-r-y.org.uk
When Cardiac Risk in the Young (CRY) was founded in 1995 it was the to the range of conditions that can cause young sudden cardiac death (YSCD).
Every week in the UK at least 12 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 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 medical-information
We
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.
