Book project

[Guest guest]

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