Book idea

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rcharlton

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Jun 20, 2005
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641
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
I'm not sure if this idea has already been suggested by someone else, but do you know what would make an amazing book?

This forum.

Specifically, excerpts of the more heartbreaking and heartwarming threads.

There are a lot of stories here that the world needs to hear about.

People have no idea how bad it can get...nor how good it can it can get too.

All proceeds will go to ALS Charities.

Authorization may be an issue- I'm not sure who owns the posts. Reference to user names only will protect identity.

What do you guys think?
 
I think its a pretty good idea.
 
I like it, so many amazing people here, both PALS and CALS that have so much to offer others
 
it could help loved ones that disappear after diagnosis!
Maybe if they could see what life can really be like, then they will change their minds and come back around.
It would be good from the medical standpoint too. HalsWifeFran started a thread about finding something that has stopped the burning of her PALS eyes. she found out that his urine is acidic. Would be nice if the drs knew this stuff so more folks could be helped!
 
So many stories to tell. Could be a great way to increase awareness. Maybe a standard outline or series of questions that interested PALS or CALS could flesh out with their individual stories.
 
Sounds like a great idea to me as well but who can do it?

AL.
 
So many stories to tell. Could be a great way to increase awareness. Maybe a standard outline or series of questions that interested PALS or CALS could flesh out with their individual stories.

I'd be afraid that if we asked members to flesh out their stories it would never happen. I was thinking of actual posts - which are filled with in the moment emotion. Plus many members are sadly no longer with us.

I'm still not sure who owns the posts and/or who has the authority to allow use.

I checked the terms of service and found the following:
"As a user you agree to any information you have entered above being stored in a database. While this information will not be disclosed to any third party without your consent the webmaster, administrator and moderators cannot be held responsible for any hacking attempt that may lead to the data being compromised. "

The question is what is meant by "any information". Is it just registration information (name, email etc.) or does it include posts as well? If it includes posts we would have to obtain consent.

Obviously, we would want to try to obtain consent in every case in any event - but it might prove impossible or impractical in some cases. So we might not be able to use some posts.

We could start a thread where members can suggest posts which are especially touching and /or powerful.

Any other thoughts?




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I love the idea! I am constantly recommending this site to PALS and CALS in our support group. But for some non-computer savvy folks, the online part is too much of a hurdle. A book would be fabulous!
 
I believe the disclosure agreement pertains to personal information (true name, address, etc), not to the posts.

The posts are public by their very nature of being posted to the internet for all to see!

But I'm not a lawyer. I love the idea of a book! The legal risks would have to be cleared by an attorney.

-Tom
 
I thinks its good idea.
 
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