RE: Re: to Virgie Sue -LYDIA

October 31, 2005

Chris

You have brought up some valid points. I was also wondering if 's

family would object. We might should ask them if they approve of this. The

benefit of this book is for the colon cancer group that Priscilla Savary is

connected with. I think that is all I was wondering about. Jolene

Re: to Virgie Sue -LYDIA

> This is Lydia. Mainly what we have been doing: is pulling out different

emails from the

board. We have started from the beginning - that is: from when

started this board.

What we would like to do eventually is to make a book to help other people

like us. Plus,

the idea of this book is also just another idea to raise some money.

Hi Lydia

Just a couple of questions.

1. Which organisation would benefit from any money raised?

2. Would it be prudent to request permission at the begining of the venture

rather than at

the end and risk a refusal?

Also has anyone envisaged a possible logistical problem of contacting

relatives of

contributors who have passed away.

Whilst I think this is a noble idea, I remember well the furore caused by

someone in Spain

who wanted to take useful info from an expats group, and provide a monthly

printed

magazine for the benefit of thousands of expats living in Spain who dont

have a telephone

and no Internet access. The backlash was awful and the group imploded and

had to go

private.

I will give you another example to ponder. The Lance Armstrong Livestrong

campaign is

known all over the world.

Spanish people along with other nationalities are often asked to contribute

to that charity.

Especially when the races are held here in Spain and France.

From the little I know, the only people or organisations to benefit are in

the USA.

I think the issues of copyrite, permissions and anonymity should be

addressed early on.

Writing a book a a full time occupation and requires dedication of both time

and

resources, something that most sufferers and/or their carers dont have much

of.

in Spain

> Some time ago, I have started to read the emails and the stories that were

written, long

ago on this board. I thought they were very touching and so instructive. I

have learn more,

reading from the board then from anywere else. 's writing, but even

other people's, is

full of details, truths and have so much humanity.

>

> So according to Priscilla, Narice and me, we have decided to put things

together. We are

choosing the emails that we think, may be important for readers.

> Also, this is something that we are doing, for now, just as a group, but

eventually

Priscilla will have to ask for the permission to either the people who have

written or to the

people who are related to those who unfortunatelly, aren't here anymore.

>

> I myself, believe that this is a great idea in terms of humanity and in

terms of being able

to raise some money. Plus the more we can spread those news, the more people

can be

aware that colon cancer is not a thing just for older citizens, but it can

happen even

younger people.

> People don't usually talk about those things in America, but even less

overhere in Italy

and I would presume that's like this, all over the world.

>

> Lately Narice was doing most of the job, as sometimes my computer gets

blocked.

However I will try to do it again as much as I can.

> To see our job, please go to ccsupportstories.

>

> Well Sue, thank you for your help. If you need me, don't be afraid to

contact me. Should

any body else want to join us, they would be more then welcome. Especially

because this

is a big job. (reading so many letters to find out the right ones is not

easy, especially if

most of them are so beaufiful and so important.)

>

> Love and prayers to all,

>

> Lydia

>

> Virgie Sue <suebutler45@y...> wrote:

>

> >

> > As I will need to be spending more time with Phil I can not do this

> project

> > for now

> > If someone wants to take this on for now please let Lydia or I Know.

> > Narice

> >

October 31, 2005

As far as who will benefit, yes the lions share will go to people in the US.

Primarily because that is the larger population to connect with us. With mail

patient packets all over the world - at no cost to the receipient. We also on

average, answer around 3,000 emails annually from people outside of the USA.

Answers often include researching specifics for their situation, finding

resources that exist in their country (if any do) and getting recommendations of

doctors in their country who are experts if called for.

I didn't realize that the Lance Armstrong foundation wouldn't send their

materials outside of the US.

Priscilla A. Savary

Executive Director

Colorectal Cancer Network

PO Box 182, Kensington MD 20895

psavary@...

www.colorectal-cancer.net

_________

Screening for All. Colon Cancer for None.

ProjectMARCH -- rarely in life do you get a chance to make major change or save

thousands of lives. March 6, 2006 you can.

http://www.colorectal-cancer.net/projectmarch.htm