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April 19th
After many years of raising awareness of CRY in
Northern Ireland, our Divisional Representative John Lundy has succeeded in
launching an Action Group. Alastair Paterson (volunteer Parliamentary
Representative), Tony Hill (Family Screening Manager) and I
 received a
wonderful welcome on our trip to Belfast and had a very productive day with
the CRY Northern Ireland Action Group (left). In particular we were there to
address the progression of the CRY Northern Ireland screening clinic. This
will be launched at the UU Clinic in the Jordanstown campus of the
University of Ulster in the Autumn. It will be based on the same protocol
as the CRY Centre for Sports Cardiology at the Olympic Medical Institute and
will offer both screening for elite athletes, athletes from the Sports
Institute Northern Ireland and a separate subsidised clinic for the 35 and
under Northern Ireland community that wish to have cardiac testing.
April 23rd
A grizzly day did not deter the enthusiasm or
dampen the spirits of our 84 CRY runners in the
London Marathon, an event
which is a mainstay of CRY core funding which this year has to date raised
over £110,000 gross.
Our Chairman Professor Greg Whyte apologised for
not being able to run as he was otherwise engaged in - what was at the time
- a “top secret” project. The secret became public knowledge in June when
it transpired he was the trainer for TV Star David Walliams' cross channel
swim for Sport Relief. This training extended over 10 months (since
last Autumn) and during the course of this time David found out from Greg
about CRY and became very interested in our campaign.
He subsequently
became a Patron which puts CRY in a very envious position indeed. What a
wonderful Chairman to have found us such a fabulous Patron.
 Our London Marathon Headquarters, in the bowels
of the Hilton Hotel off Green Park, as always played host to our Sports
Massage Team (left) which, together with the prospect of a hot shower, made it a
very popular venue for exhausted CRY marathon runners.
 Our fastest
runner was Mark Richards (right), a member of the superb team of Greg’s athletes who
again ran in a CRY heart - and was again the first full costume runner
across the line.
The slowest and one of the most astonishing
endeavours of the whole event was that of
Peter Snell who had broken his
ankle during training.
 He was inspired and supported by his friend Bill
Gulliver MBE who, having been afflicted with blindness, has learnt to be
undeterred by life’s challenges. Peter (right) had special crutches designed and
donated so that he could still compete. These introduced a new (and
painful!) dimension to his training but crucially allowed him to nurture
his dream of participating. Peter’s determination for CRY was a tribute to
the memory of his Uncle Peter who had died from Sudden Death Syndrome. He
said that “at the end I was on a mission and I just couldn’t stop - mostly
from fear of not being able to start again!” Many thanks to the BBC for
highlighting this extraordinary feat of endurance (walking on crutches for
over 8 hours) on their website and to Peter for his resolve and support for
CRY.
Most importantly a very big thank you to all
those that chose to run for CRY. Thank you to the support teams of the
families and friends who encouraged them to keep on training through the icy
early mornings and the dark dank winter evenings. Thank you to the sponsors
that believed in them and to the London Marathon organisers who make this
event so special for us all.
 April 24th
Tony Hill’s determination to offer a
transportation service in the CRY van from the London Marathon Finish Line
to the London Hilton for our exhausted runners, put him in a challenging
position. Problem - he had to attend the British Cardiac Society
Conference starting in Glasgow the next morning. Solution - he drove
through the night (still in the CRY van!) to reach Scotland in time and
meet up with our Conference Representative Eddie Farrow. Sharing a large
and prominent table with the Cardiomyopathy Association proved a great
success for both parties who concluded the event with booking the same table
again for next year.
CRY Research Fellow Dr Sandeep Basavarajaiah
(left) made his first major presentation at this important conference on the
“Physiologic upper limits of left atrial diameter in highly trained
adolescent athletes.”
It was Sandeep’s first national level
presentation in cardiology. Sandeep says:
“This is a speciality that I want to do for the
rest of my life. It was really great to present a paper in front of learned
people. I received appreciation from a lot of cardiologists after my
presentation. I will be presenting more papers in National and International
meetings in coming months on my research from working with CRY.”
Sandeep was supported by his mentor Dr Sanjay
Sharma under whom he is training at Lewisham University Hospital.
April 28th
 I was asked by Doreen Harley to attend the
re-opening of the Inquest in Warrington, Cheshire of her daughter Lisa Jane
Browne who died in 1998 with an open verdict recorded. Doreen, Lisa’s
mother, found us after the death of her daughter and learnt that the
condition Lisa died of could be inherited. Tests confirmed that it had
affected 5 members of her family over 3 generations and she consequently
battled for 8 years to have Lisa’s Inquest re-opened, with the support of
her Coroner Nicholas Rheinberg. At the re-convened second inquest Mr
Rheinberg congratulated Doreen and her family for their painstaking
endeavour and ruled that Lisa had died from heart failure due to LQT2.
The re-opening of an Inquest is a rare event and
the importance of it – and implications for hundreds of other people across
the country - was immeasurable. Doreen’s successful quest was covered by
every national newspaper. The ordeal took several years of the family
painfully going over the details of how Lisa died. As Doreen said:
“This has been like going through Lisa’s death
all over again. The only difference for us this time is that there is no
body. However having the inquest has given us the answers we so desperately
needed. We will now be able to bring about closure following Lisa’s tragic
death.”
June 10th
Our annual Bereavement Support Day was fully
booked with 110 parents, partners, siblings, grandparents, relatives and
friends finding comfort and useful information from the day. For this most
important event in the CRY calendar we book the entire Institute of Child
Health so that we can use all available rooms for small workshops.
Many of those taking workshops were doing so for the first time having just
completed their training, and linked smoothly with those from our inaugural
group, to help with this very emotive day.
This significant and deeply moving event,
exclusively devoted to young sudden cardiac death, with no observers or
sponsors permitted, was introduced into our Bereavement Support Programme in
2003 as a result of receiving a 3 year grant from the Department of Health.
A series of last minute crises resulted in several of our Bereavement
Supporters having to withdraw for unforeseen personal circumstances.
However we were enormously lucky to be able to draw, at the last minute, on
the invaluable support and experience of Alastair Paterson, his wife
Stephanie, and Kenny Bowen - whose understanding of the purpose and
objectives of the day over a number of years enabled them to make a crucial
contribution in helping us with the workshops.
We were hugely grateful to them, and all of our
Bereavement Supporters who have undergone 2 years of training to achieve
their British Association of Counselling (BAC) Skills and Theory
certificates, having themselves suffered a tragic loss. Also many thanks to
external help from Nurse Specialist for Inherited Cardiovascular Disease at
Great Ormond Street Diane Coulson, Maralyn Potter and Tony Hill, now our
newly appointed Bereavement Support Co-ordinator.
As always we were hugely indebted to our
excellent speakers: Dr Sanjay Sharma, CRY’s consultant who now runs an
Inherited Cardiovascular Disease Clinic at Lewisham University Hospital;
Michael Burgess, past secretary of the Coroners Society and the Coroner who
wrote the Appendixes for the new Chapter 8; and Dr Elijah Behr, the author
of our SADS book “When a Young Person Dies Suddenly” which was funded by the
British Heart Foundation.
 June 22nd
Gregor Townsend MBE (left), the Scottish former Rugby
International, agreed to be a Patron of CRY which is of particular
importance in our efforts to profile our work in Scotland. This was through
an initiative of David Gordon, a long-time CRY supporter since his 15 year
old son Ewan died playing basketball during a PE lesson.
It is uplifting to be able to conclude with the
news that CRY/I have been asked by the Administrator for Chapter 8, to Chair
the National Sudden Cardiac Death/Inherited Cardiac Conditions delivery
group, because CRY is perceived as the organisation with the most knowledge,
expertise and experience in this field of work. The Group will have its
first meeting in the Autumn and be reporting to the Programme Implementation
Board.
Fuelled with optimism we believe that real
progress in tackling young sudden cardiac death is about to begin.
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