Posted by PaulClabburn on Aug 1, 2016 in 2016, Awareness, Cardiac Risk in the Young, CRY screenings
Earlier this year Tom and Claire’s Fund supported six days of screenings at CRY’s testing centre based at St George’s Hospital, London.
More than 500 people were tested and 29 have been referred for further tests. That such screenings can take place is yet again down to all of you who have raised money and awareness.
CRY’s Chief Executive, Steve Cox, sent this message: “In 2008 the friends and family of Tom started to support CRY in his memory. The first such screenings were held just a year later at Brentford Football Club, the final destination of the national CRY Philips Testmyheart Tour.
“Every year since, at least one day of screening has been held in Tom’s memory.
“This year, over 500 people have been tested in memory of Tom and Claire at CRY’s Centre at St George’s Hospital in London. The screening clinic in London provides a unique regular service which people travel from all over the country to attend.
“In total, over 1,800 people have been screened thanks to the support of friends and family of Tom and Claire. This will have resulted in six people being diagnosed with potentially life threatening cardiac conditions. These are conditions which will benefit from treatment, lifestyle changes or in some cases corrective surgery to remove the risk.
“An additional 18 young people will have been told they have a cardiac condition which is not life threatening but, by knowing about the condition now and having it monitored, it will prevent problems from occurring in the fourth decade of life, when it is too late and the damage is done.
“As well as screening hundreds of young people, the support in memory of Tom and Claire has enabled CRY to purchase an additional ultrasound machine, helping to expand our screening programme and test many more people. By offering an echo to every person at a screening who needs it, based on their ECG and symptoms, we are able to reassure more people on the day of the testing and minimise the numbers of people referred into the NHS for further tests.
“Since 2008 over £150,000 has been raised in memory of Tom and Claire. This year Paul and Ellen agreed to also support CRY’s research programme. Our latest published research has been referred to by leaders in the field as some of the most important in the area in helping to understand the causes of young sudden cardiac death.
“CRY’s research is also having a major influence throughout the world, refining the criteria used when analysing ECG’s. In the coming weeks we will be publishing a paper in a major American journal which shows CRY’s research has reduced the number of people who are referred for further tests by 20%. This is going to have a massive impact on making screening programmes more cost effective but also, when you apply this to the wider clinical practice, it could lead to huge savings within the NHS.
“This is just one of our most recent breakthroughs which would not have been possible without the incredible support of everyone who knew Tom and Claire. Thank you.”
We will be holding a further screening day in Ealing in November and will be looking at ways for the Fund to support further CRY screening events before the end of this year.
Posted by PaulClabburn on Jun 26, 2016 in 2016, Awareness, Cardiac Risk in the Young, CRY London Bridges Walk, Fund-raising event
Team Tom IX – well, two-thirds of them.
Around 50 people walked for Team Tom IX in memory of Tom and Claire on CRY’s 10th Heart of London Bridges Walk on Sunday, June 26.
It was a fantastic turnout and we are grateful for the effort people yet again made. Given that this was our ninth year of walking, to maintain such numbers is remarkable and a tribute to all involved.
Ellen said: “It was lovely to see so many people and we really appreciated that they had given up their time to walk with us and for CRY.”
More than a thousand people registered for the walk.
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Posted by PaulClabburn on Jun 23, 2016 in 2016, Cardiac Risk in the Young, CRY London Bridges Walk, Tom Clabburn
Claire and Tom
This Sunday is CRY’s 10th Heart of London Bridges Walk. We’ll be walking again to remember Tom and Claire.
Please join us if you can – we’d love to see you and you can register on the day.
Full details are here but please be aware that the walk starts from a new location – Potters Fields Park near Tower Bridge.
Hope to see you there.
Posted by PaulClabburn on May 16, 2016 in 2016, Awareness
The latest in CRY’s series of booklets* on coping with the unexpected loss of a young person is about anniversaries.
It examines how people try to manage what can be a difficult day or time, best summed up by Alison Cox, CRY’s founder, who writes that anniversaries ‘become a focal point, offering precious time to reflect on cherished moments plucked from their brief lives spent together. Moments that are needed to serve a lifetime.’
We have anniversaries for Tom and, of course, for Claire too.
We also have a day, hopefully a bright, sunny summer’s day, that remains equally important to us; the CRY London Bridges Walk. Over the years it’s become probably the largest single gathering of friends who want to remember Tom and Claire. It is also, of course, a day in which the message is far larger than any single individual or family, highlighting as it does the shocking loss of young lives every year to illnesses which are, in the main, treatable.
If you can join us again this year, on June 26, we would love to see you. Details are here.
See you on the day!
*The other titles in the series are: A Sibling’s Grief; A Partner’s Grief; A Father’s Grief; A Mother’s Grief; Christmas. Details of all the booklets are here.
Posted by PaulClabburn on Apr 22, 2016 in 2016, Awareness, Fund-raising event, Uncategorized
Jamie at the end of the Chester Marathon.
When he stands at the start line for Sunday’s London Marathon, Jamie Gavin will be aiming to complete a fantastic triple in aid of Tom and Claire’s Fund and CRY.
Jamie, a BBC Sport journalist, has already run the Liverpool Marathon on June 14 last year and the Chester Marathon on October 4. Now he’s on the verge of realising his ambition of three marathons in under a year for CRY.
He said: “With all the selfless time and effort Claire put in for so many young journalists, it will be really special to run in aid of Tom and Claire’s fund and CRY again – this time in London, where we spent the first weeks of our training at the BBC with Claire.”
“All the support and donations received throughout the three marathons has made it more than worthwhile, and it would be amazing to break through the £1000 raised barrier this week – we’re nearly there!
“It feels like I’ve been in training for ever, so I’m really looking forward to finally getting out there and running the race in front of the crowds.”
You can support Jamie here.
Posted by PaulClabburn on Apr 18, 2016 in 2016, Awareness, Cardiac Risk in the Young, Claire Prosser, Fund-raising event
Claire and Liz.
BBC journalist Liz Rawlings will be tackling her first marathon in memory of Claire and to support CRY when she takes part in this year’s London event on Sunday.
Liz said: “Claire was – and remains – a legend at the BBC. She started the Journalism Trainee Scheme which gave me and so many others our starts.
“I was a trainee in Claire’s 5th year running the scheme. She was so much more than a manager to us – she was a mentor and friend.
“We found out relatively early on in the scheme what had happened to Tom and the brilliant work Cardiac Risk in the Young did. Claire spoke so passionately about the charity and was always organising events to raise money. After Claire died, I decided to run the London Marathon to raise money for CRY in her memory. I have been running for a few years – but this is my first marathon.
“I hope I can raise as much money for CRY as possible. I’m nearly at my target, but the more money I can raise the more young people can be tested – and more lives saved.
“I haven’t thought much about what I’ll do after the marathon – 26.2 miles seems a long way – but one thing is certain, I’ll have a glass of Prosecco. It’s what Claire would have wanted!”
You can sponsor Liz here.
Posted by PaulClabburn on Apr 8, 2016 in 2016, Awareness, Cardiac Risk in the Young, Fund-raising event
This year’s annual Ealing Eagles Running Club 10k on Sunday, May 8, 2016, will be run in aid of Cardiac Risk in the Young.
You can sign-up for the run in Gunnersbury Park, Popes Lane, Ealing, here.
Race director Dan Houghton said: “We’re proud to be supporting CRY through the 2016 Ealing Eagles 10k and would like to encourage as many people as possible to take part and support such a worthwhile charity.
“We have chosen CRY this year because we passionately believe that young people should be able to attend free screenings that could identify undiagnosed heart conditions and we have a local connection with the Tom and Claire Memorial Fund.”
Paul Clabburn said: “We are very grateful for the ongoing support Ealing Eagles offer to CRY and to the Tom and Claire Memorial Fund. We will be holding further free heart screenings in Ealing in November but if anyone has concerns in the meantime, they can book a screening via the CRY screening diary here or contact CRY on 01737 363222.”
Posted by PaulClabburn on Mar 21, 2016 in 2016, Awareness, Cardiac Risk in the Young, CRY London Bridges Walk
CRY: Team Tom 2015.
I’m sure many of you will already know that this year’s CRY Heart of London Bridges Walk is on June 26. Both Ellen and I very much hope you will join us by signing up here to remember Tom and Claire and to support CRY.
Because CRY really does need your support. There are still 12 young people aged 14-35 dying each week from undiagnosed heart conditions, when the vast majority could be treated.
The scale of CRY’s task was neatly encapsulated in a recent BBC West Midlands Inside Out* programme featuring the extremely resilient and articulate Nicola Everill, mother of 17-year-old Jordan Burndred who, like Tom, was one of the 12. Jordan died last year from an undiagnosed heart condition.
Nicola, her family and friends raised money for the CRY screenings featured in the report and are campaigning for such screenings to be made compulsory. Amen to that. It’s a sadly all too familiar story. Leave it to the bereaved.
This happens, of course, because the medical establishment does not support cardiac screening. Thus the UK National Screening Committee (UKNSC) last summer turned down a proposal to make screening for young people compulsory.
The Inside Out team requested an interview with the UKNSC but it was declined. Instead, there was a statement from the director of programmes for the UKNSC, Dr Ann Mackie, in essence saying it was not convinced about the value of screening (presumably based on a claimed unacceptably high number of ‘false-positive’ results, a contention which CRY would dispute) and that individuals might stop exercising if they thought they were at risk.
It is a great shame that nobody from the UKNSC took part. One would have hoped that the remit of a public body included clearly transmitting its views to the public, including the evidence upon which such views are based. This the UKNSC has failed once again to do.
The view that screenings are not sufficiently accurate and could, via a false positive finding, prevent someone from exercising or destroy their ambitions in sport was also spelled out by Dr Mike Knapton of behalf of the British Heart Foundation.
While I’m not at all surprised by the UKNSC trotting out the same old ‘nothing to see here, please move along’ line, I find the BHF position more troubling. Claire and I supported the BHF before Tom’s death and continued to support it thereafter. I still support it as a charity and I’m not proposing to stop.
But with the current lack of easy access via the NHS to cardiac screening for the young, let alone a compulsory screening programme, parents and young people need still greater clarity of information. They need to be able to make an informed choice on whether to be screened or not.
In practice, given that you can’t get an NHS referral for a screening unless you have symptoms and the majority who die are asymptomatic, that means apparently healthy people having to decide whether to attend a CRY screening. The Inside Out programme won’t have helped in that decision-making process. It laid out the competing claims, nothing more.
Imagine though, that all the evidence in favour of screening were put aside – for example, the data from CRY’s screenings, 20,000 of them in 2015 alone, or the experience in Italy, or last year’s Harmon, Zigman and Drezner J, peer–reviewed report on potentially lethal cardiac disorders in athletes – and we were left only with the evidence from the Tom and Claire’s Fund screenings. What, then, would be the answer to the question ‘Should there be a compulsory screening programme?’ Based on what we have seen and heard for ourselves, it would still be a resounding ‘Yes’.
Screening works. It saves lives. So please walk on June 26. You’re needed as much as ever.
*BBC West Midlands Inside Out programme on health is still available on BBC iPlayer. The report featuring CRY is at 20:09.
