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

Tom, Claire, your money and @CRY_UK

CRY postcard campaign

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

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Posted by 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

CRY April 2015 2_edited-1

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.

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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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Posted by 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

Rupa Huq MP joins CRY APPG

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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Posted by on Apr 16, 2015 in 2015, Awareness, Cardiac Risk in the Young

“To do nothing is not an option …” @CRY_UK’s General Election manifesto

 

CRY April 2015 2_edited-1

CRY on the road.

 

CRY have produced an apolitical election manifesto. It’s well worth a read and you can find it here.

In its own words it “… brings together our key campaigns, including; improving awareness in the general public and within the medical community, providing appropriate support and expert pathology, improving early diagnosis through
screening, improved management of young people identified with cardiac conditions and greater research into young sudden death.”

It calls for the next government, of whatever political stripe, ” … to establish a national strategy for the prevention of young sudden cardiac death.”

 

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Posted by on Mar 28, 2015 in 2015, Awareness, Cardiac Risk in the Young, CRY London Bridges Walk, Fund-raising event

12 weeks to go before the @CRY_UK London Bridges Walk 2015

CRY Bridges 2014

We’d be thrilled if you could join Team Tom VIII for the 9th annual Cardiac Risk in the Young London Bridges walk, taking place on Sunday, June 28.

You can register for the event here .

Don’t worry if you can’t fund-raise, the event is as much about raising awareness as cash. After eight years of walking, CRY understand that it’s not easy to keep trying to obtain sponsorship.

So enjoy a stroll through the centre of town to mark CRY’s 20th anniversary year and wear the CRY T-shirt.

Claire believed it was an important way to promote the message that the loss of 12 young lives a week was unacceptable. She was determined never to miss a Bridges Walk. It would be lovely if you could help us keep that commitment alive.

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