September 12th Branston Golf and Country Club
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of all we would like to thank everyone involved in making
such an excellent venue available to us. It is often
a worry when anywhere new is tried and we are pleased
to say that we propose to hold a similar event at the
same venue next September.
were 30 of us present at the start to see Andy and Steve
from The Swadlincote and District Round Table present
FAP Gene with a cheque for £1,800. This had been
raised by their Cheap Car Challenge involving four cars
bought for less than £200 each and travelling
to Edinburgh, London and Cardiff over a weekend. As
stunning as this was they also mentioned this was not
yet the final total. Needless to say they were given
a very warm reception by everyone.
2008 at our annual Family/Information Day at Swarkestone
Sailing Club Dr Alison Metcalfe from Birmingham University
talked about The Family Talk Study. This involved seeing
how parents and their children talked to each other
about a genetic condition in the family. Today Alison
returned to give us the final results. Some members
had helped with the study and there were many little
nods of the head during her talk.
being informal and no strict programme there was time
for many questions and discussion about the report.
It was a nice surprise that Wendy Chorley The Familial
Cancer Nurse Specialist from The Derbyshire Hospitals
popped in and helped with some answers. Wendy has virtually
been our resident health care professional from day
one and it is very much appreciated.
was all noted by Krystle Konteh from The Genetic Interest
Group who was later to talk about FAP Genes involvement
in The Facilitating Networks Project which will aim
to improve communication, information and access for
rarer genetic conditions.
ages ranged from a nine year old to the late sixties
with plenty of private discussions going on throughout
the day apart from more general ones from the two talks.
more about Krystle, who has just finished the first
year of the three year project. FAP Gene is one of eight
members of The Genetic Interest Group taking part. GIG
believes there is a real need for a project such as
this as their previous research has highlighted the
difficulties that children, adults and families with
rare genetic disorders experience in receiving high-quality
up-to-date information and optimal healthcare. They
are confident that not only will the results of this
project benefit the patients they will be working with;
it will serve as a template for other Patient Support
Groups to utilise in developing their own Networks of
end of the day soon came and all were still chatting
away and commenting on how valuable such a day had been.
Most had learned of us through the website and hopefully
in the future health professionals might be encouraged
to find groups similar to ours in the same way for the
benefit of their patients.
Mason September 13th 2009
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