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CRY Newsletter - Issue 43

 

By Alison Cox
Founder and Chief Executive

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I would like to begin this newsletter by extending our thanks and appreciation to retiring member of our Trustee Board (and our first Chairman), Ron Presley (left), for his most important contribution to CRY for the last 11 years.  Ron and his wife Frances will always have a special place within the annals of CRY for their dedicated support and commitment since our inauguration in 1995.  It was Ron that secured the interest of those needed to anchor CRY’s charitable status, who donated their expensive services free of charge. 

 

Ron and Frances were stalwarts in our early days of fundraising, securing support from the All England Lawn Tennis Club for our Wimbledon Fun Day. This was our first major annual fundraising event, when we took over the whole of the indoor centre at Wimbledon for the day, for an indoor tennis event for young people.  Ron was also instrumental in us receiving our first major donation from the club’s charitable fund that contributed (in tandem with very successful fundraising from our supporters including the invaluable contribution from Annette Jones) towards the purchase of the echocardiogram machine that Professor McKenna required at St George’s Hospital, to enable him to set up the first specialist clinic for inherited cardiovascular disease in the UK.

 

The Accuson echocardiogram machine was launched in the cardiology department at St George’s by John Curry, the Chairman of the All England Lawn Tennis Club, and, I was told by a member of the cardiology department staff, that such a donation (worth £120,000) was not something that had ever happened to them before.  It tested over 14,000 people considered at risk of sudden cardiac death at the clinic before it was replaced, and was also pivotal to the introduction of our first screening events around the UK.    

 

 

July 4th

CRY was a founder member of the Medical Technology Group formed in 2000, and their recent parliamentary showcase event in Portcullis House was sponsored by Dr Doug Naysmith MP, a member of the Health Select Committee.

 

CRY Conference Manager, Tony Hill (right), and Publications Manager, Mark Fox, manned the CRY information table and enjoyed meeting up with MPs and especially the guest speaker, Health Minister Andy Burnham, who remembered he would be seeing them again the next evening when he was due to speak at our Parliamentary Reception.

 

 

July 5th

On July 5th, in the middle of our Raising Awareness week, we were able to celebrate not only our Parliamentary Reception but also the fabulous achievement of our celebrity guest and new CRY Patron, David Walliams (left). David had swum the channel 2 days earlier in record time, after a brilliantly managed secret 9 month training programme orchestrated by CRY Chairman Professor Greg Whyte.  I was reassured of David’s commitment to our Parliamentary Reception when Greg called me from the beach to tell me that David was not only looking forward to coming but had been practising his speech whilst waiting for the go-ahead.  David was a huge hit at this, our highest profile event of the year.  He arrived early, stayed late, signed every autograph and had endless photographs taken.  He was especially appreciated by the members of our Surgery Supporters Club, who came and told their very poignant stories to the invited guests. 

 

Health Minister Andy Burnham (left) was a Founder Member of the CRY All Party Parliamentary Group, and gave a powerful speech about his own experience of sudden cardiac death through the tragedies that have affected his constituents. He affirmed his commitment to CRY and his determination to ensure that the opportunity presented by the new Chapter 8 in the National Service Framework would be acted upon.

 

National Director of Heart Disease, Dr Roger Boyle (right) spoke of his optimism about the new chapter and the importance of taking advantage of all the available expertise to take forward the issues that needed to be addressed.

 

CRY Patron Simon Halliday (left) spoke briefly about his fundraising events that raised £180,000 in a high profile week in March, in memory of Howard and Sebastian English (who both died playing Rugby).  This will be dedicated to funding the Pathology grant for Dr Mary Sheppard, as Howard’s incorrect pathology led to the death of his son Sebastian.  Simon’s goal now is to progress the screening we already do for the elite rugby juniors down into the schools and clubs where most of the young people at risk will be found.

 

Dr Mary Sheppard (right), expert cardiac pathologist, thanked CRY for her grant which will enable her to offer a fast track pathology service for coroners after a sudden death.  Bereaved families often have an agonisingly protracted period before their sudden death can be explained to them, as the coroner is dependant on the pathology report before a verdict can be given at inquest.   Mary told us that cardiac pathology is something that has to be done in her own private time, as it is not part of the mainstream pathology service offered. She also said that the CRY grant was the first time that pathology had been highlighted and credited as being important.   

 

Dari Taylor MP (Labour) reminded us that our goal was to anticipate celebrating the day when there would be no more young sudden cardiac deaths; Tim Loughton MP (Conservative) emphasised that the deaths we deal with can affect any family, and how special the Postcard Campaign has been in successfully highlighting the length and breadth of the problem; and Annette Brooke MP (Liberal) told of the importance of raising awareness of the issues.

 

David Walliams (left) spoke of how delighted he was to be a Patron, how impressed he was with the breadth of CRY’s remit and how pleased he was to help – and that he would do anything he could for CRY, except swim the channel again!

 

 

August 6th

This was the day Greg, our illustrious Chairman and ex-Olympian, put himself on the line by attempting his own Channel crossing to Calais.  The CRY support team of Maria Carter, Tony Hill and I had an adventurous journey down to the south coast on a superb Sunday morning including an extended and noisy break on the hard shoulder of the M25 awaiting the repair of a puncture.  We eventually resumed our journey to join Mark Fox in Dover, where we spent several hours waiting for news from Greg’s support boat.

 

Early progress reports were fantastic, as Greg was reported to be cutting a swathe through a sea as smooth as glass.  This time roles were reversed, with David in his support boat.  The eventual outcome was reversed too as Greg, on an outstanding time and within view of the coast of France after 8 hours in the water, was confronted with a ferocious change in the tide.  After swimming hard for another hour and finding he had been driven backwards, there came the horrible realisation that he had been beaten by the infamously treacherous tides that haunt this notorious corner of the French coast.  Great excitement at a phenomenal achievement suddenly became gloom as it dawned on him that he had no option but to turn back.  Order was not properly restored until he was re-united with his chuckling new baby in the Hotel lobby, and cheered over dinner by David’s incorrigible sense of humour.        

 

 

September 3rd

We had a brilliant Surgery Supporters Club meeting, the highlight of which was the surprise visit of CRY Patron Andy Scott, who popped in to bring a present for our 2 football-mad young boys - 10 year old Arie Hunt, and 11 year old Jamiel Brinklow-Harries - who have both been recently diagnosed with Long QT syndrome, and told they must stop playing.  Andy had to abruptly terminate his professional football career when he was diagnosed with Hypertrophic Cardiomyopathy, and had plenty of tips as to how they would still be able to enjoy other aspects of the game, as he has learnt to do.

 

Dr Sanjay Sharma was able to (just) squeeze a visit into his busy Sunday, between his morning duties looking after the medical problems as the Lucozade Hydro Active Marathon Doctor, and his afternoon booking on a Gatwick flight to Spain to attend an international cardiology conference.

 

The Lucozade Hydro Active Women’s Challenge had 359 runners for CRY in this highly successful event, with more than 300 running in memory of Cecilia Barriga; 12 running for the Adam Donnelly Memorial Fund and several running in Memory of Tyler Bing

 

 

September 4th

We had our 4th Implementation Board meeting for Chapter 8 on Arrhythmias and Sudden Cardiac Death which, having dealt with the arrhythmia aspect of the new chapter is now focusing on Sudden Cardiac Death.  This meeting addressed the improvement of pathology services; the newly formed Coroner and Pathologist National Interest Group; and drew attention to CRY’s grant funding to develop the pathology service for Dr Mary Sheppard at the Royal Brompton Hospital.  The rationale for, and utility of, gene testing was described by Professor Hugh Watkins, who outlined what was feasible in the context of work being done at the Oxford Genetics Knowledge Park, and the importance of the gate-keeping role with regard to genetic testing 

 

 

September 9th

The Captain of the Wimbledon Golf Club chose CRY to be his charity of the year in memory of James Paterson, son of club member Alastair.  The main fundraising was the Captain’s golf tournament which was supported by ex-Davis Cup Tennis Player and Captain, Roger Taylor MBE, and local MP Stephen Hammond, who has now joined the CRY APPG (both pictured right). Roger and his wife Alison also attended the auction and dinner, and Alison was delighted with her successful bid for the Gordon Ramsey restaurant dinner for 2.

 

Special thanks to Alastair and Stephanie Paterson for the considerable amount of time they invested in raising over £10,000 for CRY core funding; and to CRY supporter Sally Holdsworth who ran the ‘Pitch and Put’ event and also secured Roger’s participation in the tournament.  Most especially thank you to Club Captain Peter Dawson for choosing CRY to be his charity at this prestigious venue.

 

 

September 20th

CRY has been working all year with Victim’s Voice in their representations around the country with regard to the Coroners service, which have been attended by various bereaved families.  CRY is part of the core sudden death lobbying group of charities (Victims Voice, Epilepsy Bereaved, Action for Victims of Medical Accidents) to protest against the Coroners Reform Bill.  This long awaited Bill has been rejected by the Coroners, The Coroners Officers and the British Medical Association as an unsatisfactory and unworkable document.  The meeting in Basingstoke on September 20th was attended by the Civil Servants involved in the drafting of the Bill, who were confronted with some very angry presentations from a number of disaffected people, underlining the considerable dissent the Bill has provoked. 

 

Maintaining the Coroners Service in its current format, where it is controlled by local government, makes it impossible to introduce the cohesive national guidelines that will standardise the help offered to suddenly bereaved families.  We strongly believe that there must be a nationally funded and regulated service with a consistent directive. The continuing fragmentation of resources, with coroners having to rely upon their own local funding sources, each with different priorities, means there will be no uniformity across coroners districts.  Currently families report a vastly differing range of experiences with their coroner, amounting to a postcode lottery at this most grievous time.      

 

 

As we approach Christmas 2006

Such a very painful period for those who have suffered a loss – it is encouraging to reflect on CRY’s progress and learn that at a time when the average income for most charities has apparently either been static or falling, CRY has in the last financial year doubled in size and employed 4 more staff to help cope with the workload.  We now have 16 in-house staff at 2 offices; 3 sub-contracted external staff (PR, HR and marathon events); and the provision of a 3 year grant for a CRY Research Fellow.  With our income last year nearly doubling, to just under 1 million pounds, CRY can no longer be considered a small charity. 

 

This is a significant breakthrough and reflects the increased number of people contacting CRY on a daily basis having suffered a bereavement, which in itself shows just how much needs to be done.  Our grass roots support is a vital part of our success and the stories that drive your commitment to CRY, are crucial to our work in Raising Awareness.  The growth confirms the significant impact of our campaign message, and is an acute reminder that our goal of introducing a national screening programme is now attainable. 

 

Increased funding has enabled us to take innovative strides to reduce the plethora of problems families face after a tragedy, via the fast track pathology service that our grant to Dr Mary Sheppard will now facilitate, and developing and improving our Bereavement Support service to include regional events in 2007.

 

It also means that we can now be optimistic that our overriding goal, to introduce a national cardiac screening programme for fit and healthy young people, is achievable.  With your support, 2007 will present us with the opportunity to take the first steps towards becoming a service provider for the NHS, by developing a strategically coherent national network of proactive regional screening clinics throughout the UK, working in tandem with CRY screenings in local communities, schools and clubs.      

     

If we streamline our objectives, the development of a national screening programme is now viable.  Increasingly our screening research is identifying that, contrary to what many believe, these conditions are often asymptomatic as many of you already know to your cost. 

 

Our ultimate achievement will be when an infrastructure is in place for  accessible clinics - such as they have in Italy - so that we can offer a service that will give all young people the opportunity to be tested if they wish.  If we maintain our current momentum and continue to receive the level of support recently experienced, such expansion will become a reality.

 

 

 

 

 

 

 

 

 

 

 

 

 

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