Posted by PaulClabburn on Apr 8, 2016 in 2016, Awareness, Cardiac Risk in the Young, Fund-raising event
This year’s annual Ealing Eagles Running Club 10k on Sunday, May 8, 2016, will be run in aid of Cardiac Risk in the Young.
You can sign-up for the run in Gunnersbury Park, Popes Lane, Ealing, here.
Race director Dan Houghton said: “We’re proud to be supporting CRY through the 2016 Ealing Eagles 10k and would like to encourage as many people as possible to take part and support such a worthwhile charity.
“We have chosen CRY this year because we passionately believe that young people should be able to attend free screenings that could identify undiagnosed heart conditions and we have a local connection with the Tom and Claire Memorial Fund.”
Paul Clabburn said: “We are very grateful for the ongoing support Ealing Eagles offer to CRY and to the Tom and Claire Memorial Fund. We will be holding further free heart screenings in Ealing in November but if anyone has concerns in the meantime, they can book a screening via the CRY screening diary here or contact CRY on 01737 363222.”
Posted by PaulClabburn on Mar 21, 2016 in 2016, Awareness, Cardiac Risk in the Young, CRY London Bridges Walk
CRY: Team Tom 2015.
I’m sure many of you will already know that this year’s CRY Heart of London Bridges Walk is on June 26. Both Ellen and I very much hope you will join us by signing up here to remember Tom and Claire and to support CRY.
Because CRY really does need your support. There are still 12 young people aged 14-35 dying each week from undiagnosed heart conditions, when the vast majority could be treated.
The scale of CRY’s task was neatly encapsulated in a recent BBC West Midlands Inside Out* programme featuring the extremely resilient and articulate Nicola Everill, mother of 17-year-old Jordan Burndred who, like Tom, was one of the 12. Jordan died last year from an undiagnosed heart condition.
Nicola, her family and friends raised money for the CRY screenings featured in the report and are campaigning for such screenings to be made compulsory. Amen to that. It’s a sadly all too familiar story. Leave it to the bereaved.
This happens, of course, because the medical establishment does not support cardiac screening. Thus the UK National Screening Committee (UKNSC) last summer turned down a proposal to make screening for young people compulsory.
The Inside Out team requested an interview with the UKNSC but it was declined. Instead, there was a statement from the director of programmes for the UKNSC, Dr Ann Mackie, in essence saying it was not convinced about the value of screening (presumably based on a claimed unacceptably high number of ‘false-positive’ results, a contention which CRY would dispute) and that individuals might stop exercising if they thought they were at risk.
It is a great shame that nobody from the UKNSC took part. One would have hoped that the remit of a public body included clearly transmitting its views to the public, including the evidence upon which such views are based. This the UKNSC has failed once again to do.
The view that screenings are not sufficiently accurate and could, via a false positive finding, prevent someone from exercising or destroy their ambitions in sport was also spelled out by Dr Mike Knapton of behalf of the British Heart Foundation.
While I’m not at all surprised by the UKNSC trotting out the same old ‘nothing to see here, please move along’ line, I find the BHF position more troubling. Claire and I supported the BHF before Tom’s death and continued to support it thereafter. I still support it as a charity and I’m not proposing to stop.
But with the current lack of easy access via the NHS to cardiac screening for the young, let alone a compulsory screening programme, parents and young people need still greater clarity of information. They need to be able to make an informed choice on whether to be screened or not.
In practice, given that you can’t get an NHS referral for a screening unless you have symptoms and the majority who die are asymptomatic, that means apparently healthy people having to decide whether to attend a CRY screening. The Inside Out programme won’t have helped in that decision-making process. It laid out the competing claims, nothing more.
Imagine though, that all the evidence in favour of screening were put aside – for example, the data from CRY’s screenings, 20,000 of them in 2015 alone, or the experience in Italy, or last year’s Harmon, Zigman and Drezner J, peer–reviewed report on potentially lethal cardiac disorders in athletes – and we were left only with the evidence from the Tom and Claire’s Fund screenings. What, then, would be the answer to the question ‘Should there be a compulsory screening programme?’ Based on what we have seen and heard for ourselves, it would still be a resounding ‘Yes’.
Screening works. It saves lives. So please walk on June 26. You’re needed as much as ever.
*BBC West Midlands Inside Out programme on health is still available on BBC iPlayer. The report featuring CRY is at 20:09.
Posted by PaulClabburn on Jan 19, 2016 in 2016, Donations
James Matthews, centre, with Chris Chalmers, right, of Whitman and Co.
The cracking start to the new year for Tom and Claire’s Fund has continued with the handing over of a cheque for £1,000 by Chiswick estate agents Whitman and Co.
James Matthews, director of the company, said: “We heard about the work of the fund on behalf of Cardiac Risk in the Young and thought it a very worthy cause. We like to play our part in the community by supporting such initiatives.”
Paul Clabburn said: “We are very grateful to Whitman and Co for the donation, which will allow nearly 30 young people to be screened by CRY . We will be sponsoring further free screenings in west London in the autumn of 2016. Anyone who wishes to be screened before then should visit http://www.c-r-y.org.uk/cardiac-screening/.”
Posted by PaulClabburn on Jan 9, 2016 in 2016, Awareness, Cardiac Risk in the Young, Claire Prosser, CRY screenings, Tom Clabburn
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
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 Dec 17, 2015 in 2015, Awareness, BBC, Book sale, Fund-raising event
There was plenty of interest in the book sale in aid of CRY at the BBC.
A book sale in aid of Tom and Claire’s Fund at the BBC’s New Broadcasting House raised £437 on Tuesday, December 15.
‘It was a day of reminiscing as we all came together to remember our friend and colleague Claire Prosser, who passed away a year ago this month,” said Ruth Arulanandam, who organised the event.
“Many of our colleagues came to donate money in Claire’s memory and to learn more about CRY. Having helped Claire run the previous sales at the BBC, it felt right to carry on the tradition in her memory and, of course, to continue to raise money for the Claire and Tom fund.”
The cake making tradition also continued: “Lorna Donlon made brownies and Sam Upton made some mince pies which were all sold out by the end of the sale,” said Ruth.
Brownies and mince pies were also on offer.
She added: “We had plenty of helpers on the day, Isabel Turner and her son Felix, Jacky Hems, Suzanne Yates, Sam Upton, Jane Palmer, and my sister-in-law, Angeline Arulanandam.
“I must also mention those important people who made the sale happen; Jess Latimer at 5Live for collecting the books, Matthew Dickinson and Michael Angelo for transporting the books to London, Gillian Dear and Sue Ellis.”
Ruth, centre, with some of the team of helpers.
Posted by PaulClabburn on Dec 7, 2015 in 2015, Awareness, Book sale, Fund-raising event
Gina Bentley, Anne Marie Reilly and Justine O’Driscoll at the night market.
A bookstall at the Northfields Christmas Night Market in Ealing raised £100 for CRY.
Anne Marie Reilly, who helped to run the stall, said: “People were focused on buying Christmas presents from a range of stalls but being in a good location we were able to grab the attention of customers, some of whom made donations, and also to raise awareness about CRY.
“Our most enthusiastic purchasers of books were older children who were less keen on Christmas shopping! We’d like to thank everyone who bought books, donated or asked about CRY’s work and, of course, we’ve very grateful to Ealing Mums in Business for making CRY their charity for the night.”
Anne Marie added: “Our local MP, Rupa Huq, spent time talking to us and was interested to hear about CRY and we also had a visit from Northfields councillor Fabio Conti.”
Ealing Central and Acton MP Rupa Huq, a CRY supporter, visited the bookstall.
Posted by PaulClabburn on Dec 4, 2015 in 2015, Awareness, Book sale, Fund-raising event
Northfields Christmas Night Market will play host to a bookstall raising funds for CRY at Kingsdown Methodist Church from 6.30pm on Saturday, December 5.
One of those running the stall, Anne Marie Reilly, said: “Ealing Mums in Business have invited CRY to be their chosen charity at this year’s event. Last year they had approached Claire to run a stall but sadly that was not to prove possible.”
Anne Marie explained that along with Claire’s friends Gina Bentley, Justine O’Driscoll and Debbie Young they would run the stall in memory of Claire and to continue her work for CRY.
She added: “It is something we want to do for Claire, who was so generous and supportive of those she knew.
“There’ll be nearly new books on sale for both adults and children. Come along and support us and stock up on reading for the winter days ahead. It will be a lively evening with music, food and opportunities to buy locally produced Christmas presents.”
