In June 2008 John received
an e mail from Prof. Delaini asking us to write an article
entitled 'The Role of an FAP Support Group or Association'.
This was for a Springer Publication through The Rosa Gallo
Foundation in Verona. Also it mentioned our giving a presentation
at their Annual Conference in Verona on December 10th 2008.
Both of us were rather stunned
by the request at first and almost doubted its authenticity.
However we soon realised that FAPGene had truly become an
internationally known group.
Over the next four months
with the help of some of our professional contacts we produced
a joint effort of 4,000 words. This was then forwarded to
the proof reader who said there was very little to alter and
that it was a delight to read.
One of the conditions of the
article was that we had to hand over the copyright to Springer.
However we would be getting two free copies of the book which
contained 248 pages from health professionals and academics
and 10 pages from ourselves.
This was quite a startling
statistic for two senior citizens with a genetic disorder.
Gran Guardia the venue for Rosal Gallo Conference
says thank you to members of The Rosa Gallo Foundation
at the end of his visit
So what can they tell you
without violating copyright? John wrote a short piece on how
FAPgene had evolved and was gradually becoming a web based
support group. To give readers an idea of whom they were there
followed John's story of his own diagnosis of FAP.
Mick complemented this with
his story before they approached the question of Discussion
Forums on The Internet and how important personal stories
They felt it important to
describe what FAPGene was all about. That they worked with
Health Professionals and Researchers to the benefit of Patients,
Relatives and their Friends. Also their plans to have a more
formal membership linked to the Family Day Registration Fee.
Then onto The Family/Information
Days which enabled everyone to meet and talk perhaps for the
first time to others with an interest in FAP. The need for
'Noted Speakers' to attract an audience and yet a long lunch
break for the more informal chats.
John wrote how FAPGene had
become respected by many academics and professional organisations
through its approach in not offering any medical advice. Then
Mick mentioned how both of them had relatively small physical
affects of FAP compared to many and this had enabled then
to continue with their work.
Finally a comment was added
from both a patient who had been to two Family Information
Days and a Health Professional who had aided their work. Overall
it was deemed to be a well balanced article which was well
received and provided the basis of the presentation then prepared
Unfortunately John was unable
to travel so Mick with his wife Ann took a mini break in Verona.
The hospitality of The Foundation was second to none and despite
a rather nervous and initially stressful time all turned out
Mick thanked Prof. Delaini
and members of the foundation for asking them to take on the
tasks. Both found it very useful in showing not only their
strengths but where they might also venture in the future.
John Roberts and Mick
Mason December 2008