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When I
started CRY in May 1995 some of the more cynical medics suggested that as such
deaths were only up to 50 a year a dedicated charity would be a waste of time
and that I should find something more useful to do with my time.
Recent information from experts suggest that it is now thought that up to
500 young people a year are dying suddenly in this way.
With such a sobering statistic it is an appropriate moment to announce
our first CRY Bereavement Support Day on June 14 which will be held at The
Institute of Child Health, near Euston station, London, and which has been made
possible by our award last year of a grant from the Department of Health.
We will be
introducing our CRY counselling trainees who in March finish their second year
of study with the completion of their Skills and Theory training.
There will be workshops focusing on young deaths affecting specific
groups including loss of siblings, partners, young children, adolescents, and
young adults. Presentations will
confront some of the issues around coping with the tragedies.
Most importantly of all, the day will highlight the support that CRY can
offer those affected by the tragedy of a young sudden cardiac death and give
them the opportunity to make contact with others who have suffered from the same
cataclysmic event.
Our chairman
Dr Greg Whyte will launch the event and talk briefly about CRY's unique remit
with regard to young sudden cardiac death, CRY's Patron Professor Bill KcKenna
will explain how undiagnosed cardiac conditions
can present as young sudden death and Dr Elijah Behr, Specialist
Registrar in Cardiology at St George's Hospital, will be speaking on the Ion
Channelopathies (Long QT, Brughada). This
will be followed by an extended Q & A session when you will have the
opportunity of putting your questions to Professor McKenna and Dr Behr.
We are
pleased finally to be able to
progress the support we can offer and are most grateful to the Department of
Health for their endorsement of our counselling work with our grant funding award.
Just before
last year’s Winter Olympics in Utah, our Chairman Dr Greg Whyte was in touch
with Professor Michael Vincent, a world expert on Sudden Arrhythmia Death
Syndrome and Founder of the SADS Foundation. On learning more about our work
from Professor McKenna he invited me to join their presentation at his medical
conference last Autumn and speak about our goals. I am delighted to be able to announce that Professor Vincent
has subsequently become a Patron. Having
the support of a world expert on arrhythmia represents an important step for CRY
and will also help us field the large number of enquiries we get through our
website from America.
 I recently
attended a fundraising dinner in Durham in memory of Levon Morland and was
reminded why we have made such advances in Westminster when Peter Mandelson was
introduced as a guest speaker, and a letter was read out from Tony Blair
apologising for not attending and wishing Sandra and Jeff Morland a successful
evening noting "with the money going to CRY it is certainly going to a
worthwhile cause."
This year we
took the very bold step of investing in having our Christmas Cards printed
professionally and they were a great success with over 1,546 packs being sold.
The most popular was a lovely painting by John Bennett in memory of his
daughter Laura which sold over 424 packs.
Critical to
this success was the support and encouragement given us by Caroline Gard who
committed a huge amount of time and energy to developing this terrific chance
for us to raise awareness of CRY at a much higher level.
In December
I was asked to speak on the impact of sudden cardiac death at The Athletes Heart
Symposium. This was a meeting
attended by international sports cardiologists, and physiologists, and Dr
Domenico Corrado's presentation highlighting the success of the Italian
screening programme was particularly pertinent.
It was frustrating that the concluding debate on the viability of
proactive cardiac screening of young athletes was curtailed just as delegates
were starting to vociferously engage in the discussion.
In September
we had the inaugural meeting of the CRY SS Club which is being funded by our
Department of Health grant. This
club is for those young people who have had or are about to confront potentially
life saving surgery including ablation, and implantation of ICD or pacemaker,
and want to help others going through the same experience.
We had an excellent weekend with our course tutor Julia Cayne giving
training in listening skills. The
highlight of the day was Dr Elijah Behr's Q & A session when those attending
were invited to ask the questions that they have never quite got round to asking
their own cardiologist! A truly
testing time for Elijah who seemed to thrive on the challenge posed by this
energized group of young people.
Recently a
journalist asked me what changes there had been since a Radio 4 interview over 2
years ago, when the Director of the National Screening Committee Dr Muir Gray
and I discussed the value of proactive screening. This was a useful question as my on-going frustration that we
could do more - and better - sometimes overrides what we are achieving.
Certainly in the last 2 years there has been much progress.
There is far greater awareness not only of these deaths but of the
devastation such deaths cause and this has been reflected in our government
grant for the development of our counselling programme.
Government concern is much more acute which was illustrated by the
interest shown in our reception in Westminster last spring and the instigation
of our All Party Parliamentary Group which gives CRY access to parliamentarians.
 The launch
of our CRY Centre for Sports Cardiology now gives all athletes concerned with
heart conditions a centre of excellence to receive expert advice and attention.
We have
printed our first (100 page) book of CRY's Contribution to Research and our
Chairman Dr Greg Whyte and Trustee Dr Sanjay Sharma are working with the
National Screening Committee to ensure that CRY's field-gathered data fulfils
the criteria they require when evaluating the efficacy of pro-active cardiac
screening.
Improvements
in medical technology have not only resulted in greater accuracy for
non-invasive testing procedures, but also enabled tremendous progress to
be made with the development of pacemakers and defibrillators.
Instead of these being the size of half a brick and in the stomach, they
are now the size of half a matchbox and placed in the chest and our CRY SS Club
is a celebration of young lives that are being saved with implantation.
Ultimately
this is our goal; this is our campaign: to find young people in time and save
lives - and you are the bedrock of any progress that has been made.
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