In this issue it is exhilarating to be able to finally announce the instigation of our CRY Centre of Sports Cardiology (CRY CSC) to be based at the British Olympic Medical Centre (BOMC) at Northwick Park Hospital. This will be given a full scale launch in the Autumn and is believed to be the first centre in the world specialising in sports cardiology.
As many of you are aware, for the last 3 years there has been a dedicated effort to find a suitable location for our Sports Cardiology Centre. A number of prestigious venues have been considered and an enormous amount of time consumed in moving this important project forward. A special thanks to our stalwart Trustees for their immense patience in helping to resolve so many crucial issues, to our Administrator Jan Smith for her dedicated efforts in driving this complicated initiative forward and not flinching in the face of the amount of work the project entailed, to the BOMC in sharing CRY's dream to establish a centre of excellence for cardiac evaluation of the athlete and to our Chairman Dr Greg Whyte who has extolled our campaign at every opportunity and ensured that those who could make a difference to developing our programme heard of our work.
The CRY Centre of Sports Cardiology is the first of its kind and will be breaking new ground with the on-going development of our pro-active and re-active screening programme. CRY's goal is to protect young lives from the risk of sudden cardiac death. Most young people play sport at some time. We have modelled our screening programme on the one that has been in existence for many years in Italy - that all people of any age playing sport in a club or school have mandatory pre-participation cardiac evaluation on an annual basis. There is indisputable evidence of the life-saving impact of their programme. Our CRY Centre for Sports Cardiology is a massively significant step forward in focusing on this crucial, potentially life-saving issue.
Our successful London Marathon entry has (to date!) netted over £90,000 which will help to core fund our expenses at the CRY CSC. We will also be extending our "ring-fenced funding" Shopping List to coincide with the extra medical equipment required and would like to take this opportunity of saying a special thank you to the Lewis Marsh Memorial Fund for kicking us off and committing to the donation of a new portable echocardiogram machine and the Craig Rampton Memorial Fund for our first ECG machine for the Centre.
Since the 3rd June 2000, our Administrator Jan Smith's remarkable organisational skills has facilitated ECG Testing/mobile screening for a total of 724 young people of which 8 are now in the NHS system. Of the 221 people evaluated in our Family Mobile Screenings, 5 are now seeking treatment within the NHS for conditions including Marfans and undiagnosed Angina; of the 174 elite athletes evaluated, 2 have been diagnosed with conditions requiring further cardiac care - i.e 1 in 90 of those tested have required attention. Convincing statistics confirming the crucial contribution our screening programme is making to those young people at risk of potentially life-threatening cardiac abnormalities.
Now that we have our first ethical approval for schools in the Western Isles “logged in” for late Spring 2002 we are going to pursue our next ethical approval programme in Essex that will be funded by the Andy Gard Memorial Fund. With data from these two ECG Testing events in which we will be aiming to screen a total of approximately 2,000 teenagers, we will have some comprehensive statistics on which to determine the viability of ECG Testing in schools.
On June 21 Dr Julian Lewis succeeded in getting an Adjournment Debate on cardiac risk in the young in Parliament (see transcript in Update). The responding Minister was Parliamentary Under Secretary of State, Yvette Cooper and for a period of ½ hour the issues around cardiac risk in the young were discussed on the floor of the House. Julian has been an active supporter of our campaign since he was contacted by his constituent Adrian Woodhead who held his 28 year old wife Sarah as she tragically died suddenly in his arms. It was excellent to have the support of the CRY team for this important debate for us which has certainly had an impact in the corridors of power.
On July 8 BBC Radio Wales released their documentary on Sudden Adult Death Syndrome. This was the first in a new documentary series Eye on Wales on which we had been working since January, and gave a moving account of the impact of sudden cardiac death and the current problems we are dealing with, including an interview with Professor Bill McKenna who said he believed that the number of young sudden cardiac deaths are probably between 4 - 8 a week. Copies of this tape 1/2 hour are available from the CRY office (see Bulletin Board).
I have been asked to facilitate a workshop at a conference to be held by the Children’s Heart Federation in London following the Bristol and Brompton inquiries. The Department of Health is reviewing services for heart children, so they can be improved in the future. They need a wide representation of parents whose child/young person has been in cardiac care to represent views on all aspects of the service to produce a report for the Department of Health. The booking date has now expired but they would very much appreciate written information (no phone calls please!) from you by fax, letter or e mail. So if your child/young person has had treatment for a cardiac abnormality this is YOUR opportunity to influence change. Information and contact details are enclosed.
This Update marks the last for our Office Manager and Brochure Sub-Editor Tony Hill who is leaving CRY after being the backbone of our office for 5 years. Losing both Tony and his mother Rose within a period of 6 months is hard. Between them they helped me negotiate so many difficult - often blind - corners. Their loyality, reliability, pride and professionalism set standards of commitment that will echo in these rooms as long as we are here. It is immensely reassurring that the blow will be softened by knowing that he will still be involved in some of our screening events, for consultation, and doing our CRY Counselling Course. He is keeping his, (and our!) options open that he may reconsider returning to CRY again, sometime in the future. Tony's background in printing has allowed CRY the luxury of being able to develop our own in-house publications service and the development of a Brochure of which CRY can be enormously proud. Tony's talent, humility, work ethic and humour have made a crucial contribution to CRY's progress - we will truly miss him.
Finally I would like, again, to nominate a special thank you to our extraordinary fund raiser Kenny Bowen. Never can there have been a more dedicated disciple than this intrepid man who over the last 3 years has written over 1000 letters, (BY HAND!) and raised the phenomenal total of £205,025 for CRY core funding initiatives. It was through Kenny's endeavours that we were able to fund CRY's move from our own home that we were working from to our new offices, and he will always be a part of CRY folk lore.
People often ask how on earth CRY, as an entirely self-funding charity which has never received government or major grant funding, has made such incredible progress in only 6 years. That is simple to answer.
Through all of you.
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