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Anniversaries and walking for @CRY_UK

Posted by on May 16, 2016 in 2016, Awareness

CRY anniversary booklet

 

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.

 

Two down, one to go, in Jamie’s @CRY_UK odyssey

Posted by on Apr 22, 2016 in 2016, Awareness, Fund-raising event, Uncategorized

Jamie Gavin, Chester Marathon

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.

Liz’s marathon effort for Claire and @CRY_UK

Posted by on Apr 18, 2016 in 2016, Awareness, Cardiac Risk in the Young, Claire Prosser, Fund-raising event

Claire Prosser and Liz Rawlings

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.

One month to go for a chance to support @CRY_UK #Ealing #London

Posted by on Apr 8, 2016 in 2016, Awareness, Cardiac Risk in the Young, Fund-raising event

CRY April 2015 2_edited-1

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.”

Walk on or @CRY_UK walks alone

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

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.

 

 

Whitman and Co’s grand support for @CRY_UK

Posted by on Jan 19, 2016 in 2016, Donations

CRY, Whitman and Co, January 2016

James Matthews, centre, with Chris Chalmers, right, of Whitman and Co.

The cracking start to the new year for Tom and Claire’s Fund has continued with the handing over of a cheque for £1,000 by Chiswick estate agents Whitman and Co.

James Matthews, director of  the company, said: “We heard about the work of the fund on behalf of Cardiac Risk in the Young and thought it a very worthy cause. We like to play our part in the community by supporting such initiatives.”

Paul Clabburn said: “We are very grateful to Whitman and Co for the donation, which will allow nearly 30 young people to be screened by CRY . We will be sponsoring further free screenings in west London in the autumn of 2016. Anyone who wishes to be screened before then should visit http://www.c-r-y.org.uk/cardiac-screening/.”

Your money in action for @CRY_UK

Posted by on Jan 9, 2016 in 2016, Awareness, Cardiac Risk in the Young, Claire Prosser, CRY screenings, Tom Clabburn

St Georges launch event, 2016

Left to right: CRY founder Alison Cox, research fellow Dr Keteepe-Arachi and patron Ben Brown.

This morning I went to see your latest fund-raising efforts turn into potentially life-saving work at the CRY Centre For Inherited Cardiovascular Conditions and Sports Cardiology, St George’s Hospital, Tooting.

All the running, climbing, book-selling, cake baking and myriad other activities you’ve taken part in since our fund started in 2008 has now raised more than £150,000 for CRY.

So it was great to

  • See the first of six days of subsidised screenings get underway. The fund is supporting the screenings between January and March at a cost of £18,000. Young people aged 14-35 attend from all over the UK and around 110 screenings are booked per session.
  • Have a look at the brand new echocardiogram machine sporting Tom and Claire’s names that was bought at a cost of £27,000.
  • Meet Dr Tracey Keteepe-Arachi, the CRY research fellow who was leading the day’s screening programme. Our fund has donated £10,000 towards research.

It was particularly fitting that the BBC’s Ben Brown, family friend and CRY patron, was able to attend the launch because he represents each and every one of you who has ever supported CRY. Not only has Ben done whatever he can to raise awareness, he has also fund-raised by putting in the hard miles running half and full marathons.

It was also, of course, a pleasure to have a chat once again with Alison Cox. CRY’s founder may have stepped down as Chief Executive but she is still getting up at the crack on a Saturday morning to support events such as these.

Last year alone, CRY screened 23,000 young people. It shows a need, it shows the demand, but there’s a long way to go before there’s a national screening programme to replace the efforts of CRY. Since starting in 1995, the charity has screened more than 80,000 young people.

Part of that total is down to you. On the way home I heard Patti Smith on Radio 4’s Saturday Live. She talked about writing the song ‘People Have The Power’, which includes the line ‘We can turn the world around.’ Because of your efforts to turn at least one part of the world around, Tom and Claire’s Fund has sponsored more than 1,200 of those screenings.

That’s 1,200 who have been given a chance Tom did not have.

For today at least, then, it seems right to reflect with great pride on the efforts of a remarkable group of CRY supporters, a group that has raised £150,000 in Tom and Claire’s names.

Thank you.

CRY St George's launch event

The echo bought with your fund-raising efforts.

 

Christmas, ‘a maelstrom of emotions’ and @CRY_UK

Posted by on Dec 21, 2015 in 2015, Awareness, Cardiac Risk in the Young

CRY Christmas bookletCardiac Risk in the Young have published  ‘Christmas following a young sudden cardiac death’, the latest in a series of ‘Grief Booklets’ produced by the charity.

As with the others, it is a series of stories told by those who have been directly affected by the loss of a young person.

CRY’s founder and outgoing Chief Executive, Alison Cox, writes in the foreword: “There is no escaping the memories of past Christmases ‘before’ their lives were destroyed by tragedy. They flood back invading every moment.”

She adds: ‘My hope is that this booklet of stories written by some of CRY’s Bereavement Supporters will help provide you with how others have developed coping strategies which are intensely personal and which they have so willingly shared.”

It is a booklet not just for those who have lost a child but for anyone who knows someone who has and wonders what to say or how to behave at this time of year. The answer, naturally, is that there is no ‘right thing’ but it may give readers a better understanding.

As with the other CRY booklets, written by fathers, mothers, siblings and partners, it could also resonate with those who have lost a child in different circumstances.

You can order this booklet and find details of the others here.