Book Project

November 12, 2009

Beth

there is no doubt in my mind that the proceeds would go to the foundation

i was wondering about the archived quotes of people who are no longer here, they can't give permission, how is that handled?

do we turn it into a general statement?

i was wondering if it would need medical proofreading and approval and what the legal issues would be

the files that i set up are in yahoo, where i receive the emails, so i think the files are in cyberspace and not in my hard drive -- unless my technological knowledge is wrong

the only access to these files is via the Internet

also, if we create a list of resources, i have no problem with non-profit resources

what do we do about the for-profit resources?

like optiview for eyeglasses?

or the place that Peggy gets her soft cannulas from?

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Book projectTo: Breathe-Support Cc: ls_pulmonaryfibrosis@...Date: Wednesday, November 11, 2009, 8:35 PM

Hi everyone,

I had a conversation earlier with Leanne. For those of you that may not know Leanne Storch is the Executive Director of the Pulmonary Fibrosis Foundaton in Chicago and is also the owner of the various Breathe Support boards (the patients board, caregivers board, grief board, and the new lung transplant and family support boards)

Leanne shares our enthusiasm for this project and believes along with us that this book could serve several purposes, including educating new patients and their families and raising awareness of this disease in the general public.

She did raise a couple of questions that I think we need to clarify. First that the proceeds from the sale of this book would need to be donated to the Pulmonary Fibrosis Foundation. I doubt very much that there will be any controversy about that.

Secondly if any of the archived posts are quoted in the book we would need to get the express written permission of the person who wrote the post in order to include it.

Third, since the book will in some sense be a product of one of the Foundation's support groups, Leanne would need to be able to give final approval before we actually published and distributed.

Fourth, when it comes to collecting stories and other kinds of information we may want to consider setting up a private blog or something similar where we can collect the various entries. Posting all the stories and entries as files on the board's website is not practical and this solution may be better than sending them all to one person where they will eat up space on his/her hard drive and will allow both Leanne and myself to maintain awareness of how the project is proceeding.

Finally I would ask that while we are all excited about the possibilities for this book the board has to remain a place where pulmonary fibrosis patients can come to express themselves, ask questions and receive answers and support. Make sure all posts about the book project are labeled as such in the subject line so that someone who's not interested can choose easily not to read it. Let's keep up the conversation, empathy and help that has made this board so great for such a long time!

That's it for the moment. Other questions may come up in the future that we can handle as they come up. Thank you, I appreciate each and every one of you and the gifts you bring to this group!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

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November 12, 2009

i remember Ginger being among one of the first to die [bad grammar]

didn't really know what was happening at the time and was too scared to read all of the details at the time

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Book projectTo: Breathe-Support Date: Wednesday, November 11, 2009, 9:08 PM

OK MY TWO CENTS that isn't worth a lot... This is all getting a little MUDDY or UNNECESSARILY detailed.. If we all agree to give our stories for the good of the foundation so be it.. If we submit them to Jack I am certain they will be used exactly for the intended purpose.

If anyone doesn't want their names used just tell him at the start.. give our dream name for your story.. myself I would be so proud to have my name in with such a courageous group. I just hope I can tell my story in a way to help someone along the way.

As far as not scaring the newbies, I know when I first started on this board our Ginger was in pretty bad shape and told us her trials.. It made

me stronger and wanting to help each one I could. I have always tried to do just that. If some do not want to hear the reality of this disease they should not be reading this support board.......

and that is all i have to say about that.. i think.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

MB..... Look again at number 'secondly'.. .you can't get permission to use a quote from archives. Unfortunately, that person died...

Perhaps you mean a family member? That gets sticky too.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Book project