Report is also below Photo's
feel these photographs show how everyone joins
in to make our Informal Chat Days such a success.
For some the chance to meet others with FAP for
the first time years after being first diagnosed.
FAP Gene Support Groups 3rd Annual Informal Chat Day
Branston Golf and Country Club
upon Trent Staffordshire Saturday 4th September 2010
Once again we held the event at this
rather luxurious setting and attracted twenty people
including four visiting for the first time. The latter
always gives a boost to both organizers and those
attending. We have always stressed it is not the number
that counts but what is gained from such a day. Meeting
others with FAP for the first time 20 years since
being diagnosed sounds amazing. However it is not
a one off for us and hopefully something FAP Gene
is helping to put right.
In true FAP Gene fashion a rather
casual start to the day with tea, coffee and shortbread
helping to break the ice. This time our members came
from Plymouth, Bridgnorth, Stockton on Tees, Walsall,
Wakefield, Derby, Melton Mowbray, Bretby, Sheffield
and London. Apologies if I have missed someone.
Mick started by welcoming everyone
and mentioned some of the subjects that might prove
interesting to chat about during the day. These included
the effect on absorption of medication due to the
lack of a large bowel, Vitamin B12 deficiency, Videoing
of future events, members own experiences, trials
and a quick look at the early days of The FAP Gene
There were also details of the talks
given to around 900 health professionals and those
interested in FAP over the past 3 years by John and
Mick. These are now adapted to the audience which
have included Dieticians, Student Nurses, Cancer Networks
and our own events.
With everyone settled down John gave
his updated Introduction to FAP Presentation and his
decision to include Curcumin (The Indian Spice) in
his diet. In a private trial by Peter, one of John's
contacts, sanctioned by his GP and consultants, this
has shown significant benefits in the control of polyps
in the colon. John has often been forced, in a nice
way, to start our Family Days with versions of this
talk. For those who have often heard it Mick is sure
they appreciate how much it has changed and been updated
over the past 5 years.
Progress on FAP Gene's involvement
in The Genetic Alliance UK Networking Project was
given by project leader Krystle Konteh. Krystle is
always a popular visitor and was asked about what
happens after the project finishes and the chance
of any findings being implemented. With 7 other groups
involved she had high hopes that some would but everyone
was aware this depends on the future changes in the
NHS especially with the Primary Care Trusts and Cancer
Kay from Shropshire was asked to
give some advice for those looking at fundraising
after her own mammoth effort raised funds for equipment
in The Shrewsbury and Telford Hospital Trust. This
was well received and showed what is possible but
with a lot of time, effort and concentration.
There were varied opinions on videoing
of future events. Most seemed quite happy in principle
but several wonder if it would inhibit the main object
of the day, the informal chat. We encourage free speech
for want of a better phrase and it was agreed we would
look further into it all. An audio only version was
suggested with editing but with the same concerns.
The initial thought had been raised by a member who
is unable to travel to our events and for others in
a similar position. Afterwards Mick realised he actually
had an audio version of his booklet 'My Genetic Journey'
on CD. Anyone wanting a copy only has to contact him.
Then it was over to general chat
and with no formal programme this continued with most
needing to be almost kicked out at 4pm as we finished.
We felt this just proved how much this sort of day
is needed and even without formal speakers it was
Once again our thanks to the staff
at The Branston Golf and Country Club for looking
after our needs and hopefully we shall be returning
John and Mick