The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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FAP Gene Article and Verona Presentation

The Role of Support Groups or Patient Associations

Polyps and Polyposis From Genetics to Treatment and follow-up

Prof Gian Gaetano Delaini and Dr. Gianluca Colucci (editors)

Springer Link July 2009 Free Introduction and Preview. Whole Chapter now $25

Springer Link July 2009 Complete Previews

Cover photo of the book

      Rosa Gallo Foundation Page

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.

Palace Gran Guardia the venue for Rosal Gallo Conference

Palace Gran Guardia the venue for Rosal Gallo Conference

Mick says thank you to members of The Rosa Gallo Foundation at the end of his visit

Mick 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 were.

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 for Verona.

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 well.

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