VOTE NOW TO NAME SITE OF INFORMATION FOR NEW AND OLD

[Guest guest]

We are going to build the site of articles/information in the form of a

web site to simplify finding things and navigating. That way we can list

a subject area and then topics beneath it and any can be clicked. We can

also make topic articles relatively short and add additional information

in sub-topics. This should help in not overwhelming on any topic, but

making all the information we can available.

PLEASE VOTE NOW FOR YOUR FAVORITE SITE ADDRESSES. You may vote for more

than one.

This site will not be medical, nor technical nor absolute in opinions,

but will be used to represent the collective knowledge and experience of

the members of the board. It will be a site of the members for the

members. Anything on it can always be cut and pasted in a post here. It

will attempt to represent where many differing views exist. It isn't

what doctors would say, but what we have all said here over time. It

will be directly linked from here.

The site will also offer help on how to use the board more effectively.

These will range from simple things such as how to receive messages (how

many new members have been overwhelmed with individual emails without

knowing there was a choice) to how to use the search feature to

encouraging people to ask or say anything they want on the board.

The site will start small and new articles will be added regularly. It

will be revised as needed, updated as needed. If any member here

disagrees with something on it they will have an address to express that

and will get a response and in most cases at least their differing view

noted on the site.

All members of the board will be involved now and in the future in the

site's development. Articles will be drafted and put on the board for

comment, recommended additions, deletions, changes. Then these comments

will be considered and revisions made.

The site will not be perfect but will at least attempt to give hope to

newbies as to living with the disease and information to all of us. It

will also highlight issues in many cases. Where there appears to be a

consensus opinion on the board it will reflect it. Where the board has a

variety of views, it will reflect that.

The hope is that as long as there is PF, just like this board, the site

we're talking about will continue to develop and grow. There is no

possible way the site will ever keep up with all the new information

posted on the board. There is never a day I don't learn something on the

board.

Please don't think its going to start out perfect and there will be no

mistakes made. Just know that if the enthusiasm just seen here today on

ideas for the site and the need for making the information available is

continued this can be something very special.

Also, be sure it is meant to augment the board just as the files,

photos, databases, and links do. It would be within the board if there

was a way to make it usable, but the limitations of the structure of the

board led us to conclude a web format would work better. Also, it will

always encourage readers to come to the board and open additional

discussion. If one reads about VATS on the site and general experiences

and expectations and some pros and cons, then the desire is for them to

then come here and ask who did and who didn't and what did they base

their decisions on.

Each of you has equal ownership in this site. While I may be doing more

writing, it will simply be things we have already said here, thoughts

developed here, the collective knowledge and experience of the board.

Also, don't think you're going to get off that easy. I will be

requesting some articles from different members and always taking drafts

you would like to present. For instance, while I might put together a

paragraph based on what Duke says about Familial PF, but Brett is the

one who can express the impact it has on a family and real-life

knowledge. If we want to know what the Flolan experience is like, Joyce

is the only one I know who can tell us.

People will see terms and topics mentioned on the board and go to the

site to figure out what in the world we were talking about. But, just as

importantly those who go from the board may see the topic " Transtracheal

Oxygen " will know they can come to the board and ask about real

experiences from persons who have or are going through the process.

Breathe-Support is all about living with PF. I have PF and my life is

wonderful. I know I sound insane and perhaps I am, but allow me to

remain so. This will be one more tool we have to assist others and

ourselves in living with PF. I wish it was possible to publish every

topic mentioned and the others we could think of immediately. Sometimes

those of us who have been here longer start talking in a language no

newcomer knows. We even forget what those who have been here may not

have been exposed to. We are the teachers. We are the support. Many of

us are beyond working and somewhere had to give up on changing the

world. However, we do help each other every day and help those who join.

I can't imagine things right now without this group. I rejoice every

time someone new joins because I know their is one less person out there

alone and with no one to turn to.

I don't anticipate the site doing miraculous things. But I know that it

can sometimes help some people just a little. For me thats enough to

make me enthusiastic about this new endeavor. Why one day I might even

figure out General Leanne got me to " volunteer, " but, I'm very

appreciative of the opportunity to help in whatever way getting this

started.