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Posted by on Jul 9, 2017 in 2017, Awareness, Cardiac Risk in the Young, CRY London Bridges Walk, Fund-raising event

Ten years of crossing bridges with @CRY_UK

CRY, Bridges Walk 2017, Team Tom, July 2017

Some of Team Tom at the start of the walk.

Thank you! More than 50 people turned-out for Team Tom to mark the 10th time we have taken part in CRY’s Heart of London Bridges Walk.

This year’s walk always felt particularly significant. A decade is a long time and with the event coming before the anniversary of Tom’s death, it was redolent with memories. To see so many people make extraordinary efforts to attend, therefore, was inspiring.

CRY’s estimate at time of writing is that we were among 1,400 people who took part. Looking around Potters Fields, it was wonderful to see how many were waiting to walk.

Wonderful but troubling. A story in the papers earlier this year told of a parent who discovered their 14-year-old son dead in bed. They had never heard of CRY, never heard of cardiac screening. All the things we were saying 10 years ago.

It raises the question – has there been progress? Is it worth giving up a Sunday to slog around 10k in the heat?

We’d say ‘Yes’.

Plainly cardiac screening is still not available as of right to young people. However, CRY are screening more people than ever before, more than 23,000 last year, and their research programme is a leader in its field. The scientific case for screening appears to be gaining ground.

The walk remains a key part in CRY’s armoury, its largest public event. It is not simply the sight of people walking or the funds raised. It also raises awareness up and down the country as local media tells the stories of those taking part.

It is one battle in a long and gruelling war. Ultimately, the injustice that is 12 young people dying each week because of undiagnosed heart conditions will end. The evidence will become too strong to be ignored.

And when it does, everyone who has ever walked will have played a part:

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead.

Thank you for walking. It means more to us than words can say.

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Posted by on May 28, 2017 in 2017, Awareness, CRY London Bridges Walk

Please join us on July 9 for @CRY_UK London Bridges Walk

Tom with Claire at a BBC roadshow

Tom with Claire at a BBC roadshow

 

CRY’s 11th Heart of London Bridges Walk will be held on Sunday, July 9. We’ll be walking again to remember Tom and Claire.

Please join us if you can – it will be our 10th year of taking part and we’d love to see you.

With all the calls on people to raise money, great if you can but you don’t have to be sponsored. The most important thing is to walk. Just bring yourself and help to raise awareness.

You can register online or on the day and full details are here.

Hope to see you there.

Paul and Ellen x

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Posted by on Jun 26, 2016 in 2016, Awareness, Cardiac Risk in the Young, CRY London Bridges Walk, Fund-raising event

Team Tom turnout does @CRY_UK proud

CRY, Bridges Walk, June 2016

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.”

CRY, Bridges, June 2016

More than a thousand people registered for the walk.

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Posted by on Jun 23, 2016 in 2016, Cardiac Risk in the Young, CRY London Bridges Walk, Tom Clabburn

Please walk on Sunday for @CRY_UK

 

Claire and Tom

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.

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Posted by on Mar 21, 2016 in 2016, Awareness, Cardiac Risk in the Young, CRY London Bridges Walk

Walk on or @CRY_UK walks alone

CRY: Team Tom 2015.

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, peerreviewed 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.

 

 

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Posted by on Jun 29, 2015 in 2015, Awareness, CRY London Bridges Walk, Fund-raising event

Wow! What a turn out for @CRY_UK London Bridges walk

CRY:  Team Tom 2015

Team Tom VIII – or most of them – walking for Claire and Tom. With thanks to David Bentley for the picture.

A huge ‘thank you’ to all those who walked in memory of Tom and Claire at CRY’s annual Heart Of London Bridges Walk on Sunday, June 28.

Maybe we shouldn’t be surprised but Ellen and I were astounded by the turn out – more than 60 people took part for Team Tom VIII.  It’s one of our largest-ever groups of walkers.

Team Tom VIII helped CRY achieve a record number of walkers with more than 1,800 people taking part. To put that in context, when we first took part in 2008 – only CRY’s second Bridges event – there were around 600 walkers in total.

Raising awareness is a key purpose of the walk and the growing numbers reflects that the message is spreading. Anyone who has ever walked has played a part in that.

If you also raised funds, it’s hugely appreciated. On that note a special thanks to Ann Huybrechts and former BBC colleagues of Claire’s who were sponsored to the tune of more than £1,600. A brilliant effort. If there were others who raised money that we don’t know about, please contact us.

We were also touched by those, young and a tad older, who made the effort to greet the walkers at the finish. They included Jacob, below. It’s for people like him that CRY exists, to give young people the opportunity to be screened (OK, so he’s got 13 years and 49 weeks to go before he’s eligible but we like the picture).

Jacob.

Sleep easy: Three-week-old Jacob supports CRY’s campaign.

To all who walked, we can but say again: ‘Thank you’.

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