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Posted by on Aug 1, 2016 in 2016, Awareness, Cardiac Risk in the Young, CRY screenings

A message from @CRY_UK to Tom & Claire’s Fund supporters

CRY April 2015 2_edited-1

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.

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

Your money in action for @CRY_UK

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.

 

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Posted by on Nov 15, 2015 in 2015, Awareness, CRY screenings, Dr Rupa Huq MP

MP visits Tom and Claire’s @CRY_UK screenings #Ealing #Acton #London

 

CRY screenings, Rupa Huq MP, Novemer 2015

Dr Huq (second right) with CRY team members (L-R) Gareth Jones, Jodie Egerton, Janice Long and Dr Harshil Dhutia.

 

Ealing Central and Acton MP Dr Rupa Huq visited Tom and Claire’s Fund’s free CRY heart screenings at the Florence Road Health Centre, Ealing, on Sunday, November 15.

Nearly 100 young people aged 14-35 attended the fully booked event.

Dr Huq said: “It was a really eye-opening experience to see for myself how a CRY screening works and impressive that such a diverse range of people from different cultural backgrounds were waiting to be tested. The message is getting out about the importance of screening and I would urge everybody in the age range to take the opportunity to be tested.

“It’s brilliant to have a CRY team working in Ealing and I can’t thank them enough.”

She added: “I’d also like to praise all those people who have supported Tom and Claire’s Fund over the years. Without their efforts, raising awareness and funds, these free screenings couldn’t take place. It was a pleasure to meet some of the fund’s supporters on the day.”

Paul Clabburn said: “Ellen and I are very grateful to Dr Huq for spending so much time at the screening and also for joining CRY’s All Party Parliamentary Group. We are also, of course, indebted to the CRY team for the highly professional but hugely welcoming way in which they go about their work and to Dr Evans and the team at the Florence Road health centre who have yet again hosted the event.”

Tom and Claire’s Fund has sponsored more than 1,200 free heart screenings since 2009. It will sponsor further screenings in 2016.

If you wish to be screened in the meantime, please click here.

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Posted by on Oct 19, 2015 in 2015, Awareness, CRY screenings

Book now for free @CRY_UK heart screenings in #Ealing in November #London

CRY April 2015 2_edited-1

The next free CRY heart screenings sponsored by the Tom Clabburn and Claire Prosser Memorial Fund will take place at the Florence Road Health Centre, Florence Road, Ealing, London, W5 3TX, on Sunday, November 15.

Anyone aged 14-35 is eligible. You can book here via www.testmyheart.org.

As ever, our thanks to Dr David Evans and the Florence Road team for making the premises available and to all of you who have run, jumped, baked, cycled, sold or done anything else that has raised the funds which allow these screenings to be free.

Please share the details on social media. In previous years, the screenings have always been over-scribed so book early!

Any questions, please contact CRY rather than us or the health centre. CRY’s contact details are here.

With thanks for all the ongoing support for CRY’s screening programme,

Paul and Ellen x

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Posted by on Aug 7, 2015 in 2015, Cardiac Risk in the Young, CRY screenings

Back to the future – no UK screening so it’s still down to @CRY_UK

Zadok england2

Tom Clabburn: “…so rare.” But not in the sense the UK NSC meant.

The announcement by the UK National Screening Committee (UK NSC) that it will not be recommending a national cardiac screening programme for young people aged 12-39 left me, as with much in life, with more questions than answers, a healthy dose of bewilderment, no little anger and much sadness.

Sadness because the UK NSC’s next review will not start until 2018/19. So we know from the outset that, based on CRY’s 12-a-week figure, just short of 2,000 more UK citizens, all of them young, will likely have died by the time anyone takes another look. Many could have lived.

That’s shameful.

Can you imagine if 12 cyclists were killed each week on London’s roads? That would be carnage. There would, quite rightly, be outrage, a huge public outcry. So why not in this case, too?

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