CRY started the year with the news that dreams are made of - that the highest profile athlete in the land, Sir Steve Redgrave CBE, has agreed to be our Patron. When he was 16 Sir Steve witnessed the sudden cardiac death of his best friend and crewmate Robert Hayley. They were watching TV at his home after a training session when Robert stood up, asked permission to have an apple, and dropped dead. The memory has haunted him ever since and has led to him dedicating each of his Olympic Gold medals to Robert. Especial thanks to Robbie and Kate Fox who contacted me with this information and who wrote to Sir Steve to tell him about CRY.
One of my goals for 2001 is to have a major push forward focusing on raising awareness of CRY. To endorse this we had our biggest event ever - 118 CRY runners in the London Marathon on Sunday April 22, including 16 in giant red CRY hearts. As we had hoped they caused a great stir!! Our 3 firemen, magnificent in their scarlet CRY hearts, and running in memory of Sarah Louise Williamson, were interviewed just before the start gun went off. There were 3 more "hits" during the event, a spot in the highlights and National News. Matt Wilson, our CRY funded Research Student was the first CRY runner to finish, and the first Marathon full costume runner across the line with an incredible time in his huge CRY heart of 3.16.
Congratulations to all our 100 runners and especially those intrepid participants in CRY hearts, who participated with such enthusiasm. Well done also to Steve Cox for taking over the organisation of the costume design, negotiations with our runners, and the CRY reception for all at The Britannia Hotel on Marathon Saturday which was well supported and very worthwhile. It was sobering to learn that in the year when CRY had its biggest profile (in the top 5% of charities entered), a 34 year old fitness instructor died of a cardiac arrest shortly after crossing the finishing line.
Many moons ago I was advised that what CRY really needed to do was recruit a "lobbyist" organisation to target M.Ps about our remit. However the cost, even then, was in excess of £30,000 and therefore untenable. However in February we were approached to be a coalition partner (at no cost to CRY!) with the Medical Technology Group working to raise the profile of how medical technology saves lives (see Update and Web). This was launched in the House of Commons and Lord Hunt (Parliamentary Under Secretary of State for Health) described it as "a celebration of innovations in science and medicine" and that the aims of the group were consistent with what the Government was seeking to achieve within the NHS.
Lord Hunt was among 30 MPs., Ministers and Peers who supported the event aimed at raising awareness of the positive impact of technology on people's lives and pressing for health-care policies that facilitate patient access. The Group wants to ensure that funding is available for all patients who would benefit from new technology which it believes is "saving and improving lives." Stephen Allan accompanied me, making a stunning contribution to the evening with his willingness to “show” all interested parties his ICD.
CRY's particular interest is in the development and application of the ICD (Internal Cardiac Defibrillator) which is a device for rapid detection and treatment of life threatening changes in heart beating patterns and sudden cardiac arrest and is increasingly being used to treat individuals found to have a potentially life threatening cardiac abnormality. In the UK we have an ICD implant rate of 17 per million - compared to 185 per million in the USA and 67 per million in Germany. There are also significant regional variations in the use of ICDs with patients in the London area twice as likely to receive implants as those in the North. The objective is to put pressure on M.P.s to alter this imbalance.
In spite of having been introduced to Lord Hunt, and making the opportunity to "present our case," and in spite of having the support of Earl Freddie Howe who wrote to the Minister on our behalf, CRY was again unsuccessful in our Section 64 Funding application. There is more detail of this in the Update. Suffice it to say that it was hugely disappointing, having met all the right people, at just the right time and suggests CRY certainly is not a charity that meets with the approval of bureaucrats in high places.
As well as our TV coverage in the London Marathon, the Allan family were interviewed on GMTV talking about the tragic death of their son Richard and the saving of their son Stephen’s life by the implantation of an ICD. CRY also has had exposure on Harlech with Paulette Smith being interviewed as she went to inform her M.P. at the Welsh Assembly about CRY's goals, and with Alison Doyle's very moving account of the impact of the death of her husband Colin on Carlton.
In concluding I would like to apologise for us again having to make this Update a late bumper issue. Our plans to get up to date by February were thrown to the winds by Rose's sudden death which had a severe practical and psychological toll on all of us in this office, and in particular of course on her son Tony who is CRY's Office Manager. Rose knew everything about everything that made our office work and life without her predictably difficult. In future, in order to give us a bit more leeway we will be producing seasonal Updates - Spring, Summer, Autumn and Winter - with all the instant news going on our Website which will be updated weekly. If you have events, articles, ideas or research information please send them to Steve for the Website so that we can keep you all in touch with what is going on. Sometimes I feel things are happening so fast we almost do not have time to circulate the news!
|
