Cardiac Risk in the Young | The Tom Clabburn Memorial Fund

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Posted by PaulClabburn 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

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.

The echo bought with your fund-raising efforts.

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

Christmas, ‘a maelstrom of emotions’ and @CRY_UK

Cardiac 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.

Posted by PaulClabburn on Nov 26, 2015 in 2015, Awareness, Cardiac Risk in the Young, Donations, Uncategorized

Tom, Claire, your money and @CRY_UK

CRY: a voice for Tom and all those like him.

This week is CRY’s awareness week. Tomorrow is Tom’s birthday. This coming Tuesday is Claire’s anniversary. A time, then, for reflection, for reminiscence and, perhaps, a time to look forward as well, for both Tom and Claire’s Fund and CRY.

As many of you will know, after we started the Fund in 2008 it was Claire’s great wish that it should raise £100,000 in support of CRY. When we lost Claire, it was just short of that figure. It is now well in excess.

We’ve therefore spent much time talking to CRY about how we might put that money to work. There’s no point in people raising or donating cash only for it to sit in an account. So we’ve agreed with CRY to spend:

• £27,000 on the purchase of a new echocardiogram machine as part of the expansion of the CRY screening programme, enabling more young people to have access to cardiac screening.

• £18,000 to fund six days of screening between January and March, 2016, at CRY’s national screening centre at St George’s hospital, Tooting, London. Young people aged 14-35 travel from all over the country to this regular clinic.

• £10,000 to fund research into young sudden cardiac death, supporting CRY research fellowship grants which are focussed on developing a greater understanding of the conditions that cause young sudden cardiac death and improving the way the young people at greatest risk are identified.

Additionally, we’ll spend further money sponsoring free screenings in Ealing in Autumn 2016, Spring 2017 and Autumn 2017.

You raised it. We’re spending it on your behalf. We hope you approve. It will leave little in the pot but, as people keep so brilliantly running, baking, selling, donating and so on, we’re sure that the Fund will be able to carry on sponsoring free screenings in 2018 and beyond.

Although we can but hope that by then we are doing so in tandem with a change of UK policy on cardiac screening that properly addresses the loss of at least 12 young lives aged 14-35 each week to undiagnosed heart conditions.

At last night’s CRY All Party Parliamentary Group event in the Commons, the charity officially launched a bold new campaign. It aims to put names to all those who make up the 12 a week statistic, to give a voice to those we have lost. CRY want to make clear to the Government the extent of the problem following the flawed decision in the summer by the UK National Screening Committee not to recommend a national screening programme. CRY have decided this cannot go unchallenged.

The new campaign will be led by Dr Steve Cox, currently CRY’s deputy chief executive, who will become its new CEO.

By which you’ll note that there’s also going to be a change at the top. CRY’s founder and CEO, Alison Cox, has decided to step down after 20 years. Alison is a remarkable woman who took on the medical and political establishment in order to shine a light on the extent of young sudden cardiac death in the UK. But for her, families like ours would have had no specialist charity to turn to for counselling, for advice and, as importantly, for a sense that there is much work to be done.

In a letter to CRY supporters, Alison wrote “I have been so privileged to be Chief Executive of CRY for so long but now would like more time to focus on the development of how we support CRY families, which is how I would like to continue in my role for the foreseeable future.”

We, too, have been privileged in being able to witness at first-hand the drive, rigour and, above all, humanity, that Alison brought to her task. We hope that you will join us in wishing Alison well as she changes direction and to Steve as he takes CRY forward.

Paul and Ellen x

Posted by PaulClabburn on Sep 3, 2015 in 2015, Awareness, Cardiac Risk in the Young, Fund-raising event

Run an #Ealing mile on September 5 for Andrew and @CRY_UK

The Andrew Carter Memorial Mile in aid of Tom and Claire’s Fund and CRY will take place in Lammas Park, Ealing, on Saturday, September 5, at 11am. You can sign up here.

Andrew took part in the 2014 Ealing Half Marathon, collapsing shortly before the end following a cardiac arrest. He passed away the following Wednesday.

The event is being organised by Kelvin Walker, organiser of the Ealing Half Marathon, who said: “Andrew’s family are keen to promote the great work which CRY undertake and hope that this mile will help raise funds to enable more screening to take place.

“The mile is for all abilities and is free to enter – all that we ask is for a donation to be made either online here or on the day. We look forward to seeing everyone there.”

The next free CRY screening event in Ealing for those aged 14-35, sponsored by Tom and Claire’s Fund, will be held on Sunday, November 15. Details of how to book will appear on this site nearer the time.

Posted by PaulClabburn 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

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?

Posted by PaulClabburn on Jul 30, 2015 in 2015, Awareness, Cardiac Risk in the Young, Dr Rupa Huq MP

Ealing and Acton MP Rupa Huq joins CRY’s parliamentary group

A screenshot showing part of CRY’s APPG membership list.

Dr Rupa Huq, the newly elected MP for Ealing Central and Acton, has joined CRY’s All Party Parliamentary Group (APPG).

The group is made up of MPs of all political persuasions and is united by an interest in, and support for, CRY’s work.

Dr Huq said: “Too many families and young people are affected by this often undiagnosed risk and sometimes with tragic consequences. I believe we should be doing all we can to highlight the risk and to support research which is why I joined the APPG.”

Paul Clabburn said: “We’re delighted that Dr Huq has joined. Since Tom died in 2007, we’ve repeatedly asked our constituency MP, whether Labour or Conservative, if they would consider joining the group and this is the first time we’ve had a positive response.

“We were aware that Dr Huq followed Tom and Claire’s Fund on Twitter so we are very grateful that she has gone the extra step and will help to ensure CRY’s message is heard in parliament.”

You can see the full list of MPs who belong to CRY’s APPG here.

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