Tom, Claire, your money and @CRY_UK

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

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