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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 Jun 29, 2015 in 2015, Awareness, CRY London Bridges Walk, Fund-raising event

Wow! What a turn out for @CRY_UK London Bridges walk

CRY: Team Tom 2015

Team Tom VIII – or most of them – walking for Claire and Tom. With thanks to David Bentley for the picture.

A huge ‘thank you’ to all those who walked in memory of Tom and Claire at CRY’s annual Heart Of London Bridges Walk on Sunday, June 28.

Maybe we shouldn’t be surprised but Ellen and I were astounded by the turn out – more than 60 people took part for Team Tom VIII.  It’s one of our largest-ever groups of walkers.

Team Tom VIII helped CRY achieve a record number of walkers with more than 1,800 people taking part. To put that in context, when we first took part in 2008 – only CRY’s second Bridges event – there were around 600 walkers in total.

Raising awareness is a key purpose of the walk and the growing numbers reflects that the message is spreading. Anyone who has ever walked has played a part in that.

If you also raised funds, it’s hugely appreciated. On that note a special thanks to Ann Huybrechts and former BBC colleagues of Claire’s who were sponsored to the tune of more than £1,600. A brilliant effort. If there were others who raised money that we don’t know about, please contact us.

We were also touched by those, young and a tad older, who made the effort to greet the walkers at the finish. They included Jacob, below. It’s for people like him that CRY exists, to give young people the opportunity to be screened (OK, so he’s got 13 years and 49 weeks to go before he’s eligible but we like the picture).

Jacob.

Sleep easy: Three-week-old Jacob supports CRY’s campaign.

To all who walked, we can but say again: ‘Thank you’.

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Posted by on Jun 3, 2015 in 2015, Awareness, BBC, Claire Prosser, Life After Tom, Tom Clabburn

Claire’s ‘Life After Tom’ documentary now available on BBC iPlayer Radio.

Life After Tom

Life After Tom on BBC iPlayer Radio.

Claire’s BBC Radio 4 documentary, ‘Life After Tom’, is now available on BBC iPlayer Radio.

You can find it here.

The programme, written and narrated by Claire, was first broadcast in October, 2008, and describes how she navigated the first 12 months after Tom’s death.

That it is now available on demand is due to the efforts of Claire’s friend – and producer of the programme – Linda Pressly.

Having listened to it again, it seems to me to have withstood the test of time and therefore stands as a fitting tribute to Claire, both as a mother and as a journalist.

PC, June 3, 2015.

 

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Posted by on Jun 2, 2015 in 2015, Awareness, Fund-raising event

Charlotte and Elizabeth’s marathon effort for @CRY_UK

Charlotte Johnson and Elizabeth Adams at the Edinburgh Marathon.

Charlotte and Elizabeth: conquerors of the Edinburgh Marathon.

Charlotte Johnson and her mum, Elizabeth Adams, successfully completed the Edinburgh marathon on Sunday, May 31, and broke their fund-raising target while doing so.

It was a second marathon for Charlotte and a first for Elizabeth and the pair, who train and race together, have raised more than £800 for CRY and Tom and Claire’s Fund.

Charlotte, who finished in four hours and two minutes, said of the generosity of those who donated: “It kept us plodding along, especially against the 40mph gusts of wind in the final miles.”

She added: “I am so proud of my Mum and her super result, four hours, five minutes. I feel so lucky to have had such an optimistic, fun and strong running partner.”

Tom was in the year below Charlotte at high school while Claire was a friend of Elizabeth’s.

We very much appreciate the efforts of Charlotte and Elizabeth, which has done so much to help keep awareness of CRY in the public eye. Thank you.

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