Old 03-14-2011, 09:48 PM #1 (permalink)
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Default Book Idea

I read the previous thread about a book idea. I have a few great stories but I need more. If I can compile beautiful, emotional, real stories that can be shared with the world, I believe we can make more people aware of what ALS is and why it matters. Please PM me if you have questions.

ALS Society of Alberta is onboard but I would love to be able to expand it beyond. I want everyone to know what ALS is and how important it is to find out why people get it. Jodi M

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Old 03-16-2011, 03:56 PM #2 (permalink)
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Default Re: Book Idea

Hi Jodi

I like the idea of pooling resources, if everyone else agrees, but my idea was not to collect stories but instead publish a collection of actual posts.

I don't think that any after the fact story could match the impact or heartbreak of a thread like this one:

Shocking/Devistating News

A 34 yr old who went from second diagnosis to death in a week - a few days before his wedding.

But maybe the book could be a combination of posts and stories.

Just one question, will your book be primarily about Joy? There is no question that Joy is an amazing person who has endured unimaginable hardship and persevered - but there are a number of equally amazing forum members, past and present. So I don't think the book should focus on any one person.

You also don't mention if you plan to sell the book and what is to be done with the proceeds.
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Old 03-16-2011, 06:00 PM #3 (permalink)
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Default Re: Book Idea

Agree with rcharlton. The Chad Bowman story is heartbreaking. Seeing it unfold the way it does, with posts spaced over time, is especially dramatic. You just can't write this stuff down after the fact with the same impact.

-Tom

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Old 03-16-2011, 06:34 PM #4 (permalink)
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Default Re: Book Idea

if you need an editor i have some experience in that area...
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Old 03-16-2011, 07:56 PM #5 (permalink)
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Default Re: Book Idea

I would most definitely want to participate
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Old 03-16-2011, 08:47 PM #6 (permalink)
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Default Re: Book Idea

To be honest you guys... Just look at what happened in Japan this week. If there is something that the world is not short of, it is heartbreak and devastation. I think something smart could be done using the message board as a platform where the stories unfold. Unfortunately it takes more than a sad story to make a successful book. (assuming you'd want for it to be successful, since I presume the hypothetical profits would be going to some ALS-related cause)
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Old 03-16-2011, 09:16 PM #7 (permalink)
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Default Re: Book Idea

Gosh, I remember Chad's story like it was Yesterday, just so sad, so telling.
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Old 03-16-2011, 09:18 PM #8 (permalink)
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Default Re: Book Idea

Joel and Al come to mind as stories of unbelievable greatness.
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Old 03-16-2011, 09:48 PM #9 (permalink)
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Default Re: Book Idea

Quote:
Originally Posted by rocmg View Post
To be honest you guys... Just look at what happened in Japan this week. If there is something that the world is not short of, it is heartbreak and devastation. I think something smart could be done using the message board as a platform where the stories unfold. Unfortunately it takes more than a sad story to make a successful book. (assuming you'd want for it to be successful, since I presume the hypothetical profits would be going to some ALS-related cause)
I am not sure what you were trying to accomplish with your post. Should we just give up? Not bother to do everything we can to raise awareness? Compared to other diseases, ALS is tragically un-publicized and we are dying in silence.

Of course there are other sad stories out there - many a lot more tragic than what is happening in Japan but not as newsworthy- genocide of thousands/millions, child sex slaves, millions dying of aids and malaria in populations drug companies could care less about cuz there is no profit, environmental destruction, species extinction. I wish I could be an advocate for all those who need help. But I can't. I do feel that I am most effective as an advocate for ALS sufferers.

The posts I think the world needs to hear are of those people dealing with tragedy and devastation on a similar scale to what is happening in Japan ON TOP OF dealing with ALS. People who have lost everything and still must deal with this disease. Spousal abuse, marriage break up, bankruptcy, young families - and many can still find a way to smile.

It is very unlikely that will ever manage to put a book out there, but if we do and it reaches a few people it will be a success. The issue of what charities would receive the proceeds is another stumbling block to resolve.
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Old 03-16-2011, 10:58 PM #10 (permalink)
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Default Re: Book Idea

i was just offering some advice from a book publisher's perspective - if you wish to publish a book to reach "just a few people" as you say, then they are likely to be people who already know about ALS and therefore your goal of publicizing the tragedy of this disease will not be met. of course i would never advocate giving up on an idea! it would be very unlike me to harbour such sentiments. if you re-read my post you would see that i was actually supportive of the idea and even offered my help. i just wanted to chime in to say that if you want to make a publisher take notice, you have a different and interesting angle -- i said the idea of an online community works better than just a straight-up journalistic or 'story'-type piece.
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Old 03-16-2011, 11:00 PM #11 (permalink)
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Default Re: Book Idea

also, i was answering someone elses question about 'profits' in case you think i was jumping the gun... read the thread again.
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Old 03-17-2011, 08:06 AM #12 (permalink)
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Default Re: Book Idea

Quote:
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also, i was answering someone elses question about 'profits' in case you think i was jumping the gun... read the thread again.

Sorry - misread your post - I thought you were dismissing the whole idea. And I am glad you raised the issue of profits as it made me realize something.

The more I think about it, it would probably be better if we didn't try and sell the book, but instead gave it away for free. It would be nice to be able to raise money for some ALS charities but this would lead to too many other problems- which charities? Who is going to manage the money and oversee distribution? Accountability? That is just asking for trouble.

We could just add a list of ALS charities to the end of the book and leave it up to readers to donate.

And to eliminate out of pocket costs, we could just create a pdf file or ebook version and distribute it by email and make it available for download.

Look at that- out of a silly misunderstanding I think we made some real progress in making this actually happen. What do you guys think?

We could use a good editor rocmg if you are still on board.
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Old 03-19-2011, 07:44 AM #13 (permalink)
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Default Re: Book Idea

I would suggest a book & GIVE THE PROFITS TO STU AT THE ALS GUARDIAN ANGELS he desperately needs donations, my husband and I have lived in desperation since his diagnosis and that is just the tip of the iceberg for losses we have dealt with & Stu is the ONLY person that has come forward to help us, I think a book about ALS from the perspective of many folks dealing with ALS would accomplish a lot, as Tim says from the "often Awesome" documentary " Hi my name is Tim & I have ALS the best kept secret in America" if it is the best kept secret then it needs to be shouted about so people know, just this week I tried like all heck to get Lady GaGa to come on board as a spokesperson for the ALS community ( you might not like her but SHE IS A MEGA STAR WITH A HUGE AUDIENCE) through her gaga gone google project, I sat at my computer for a whole day posting and watching and had the most votes from the public for my question so much so that F&^%$# youtube took my question to her off google THEY EVEN REMOVED IT OFF MY YOUTUBE PROFILE , WTG youtube WTG in helping the ALS community reach a mega star! I understand there is strife in the world & possibly some poor soul with als in Japan might even have perished in the tsunami,what if this is sadly so?I know they would want ALS out on the world radar to help sufferers & their family's
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Old 03-20-2011, 12:25 AM #14 (permalink)
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Default Re: Book Idea

Sorry, I havent been on for a few days...will try to catch up. I agree that the posts from the forum are far more real and relavant than a story after-the-fact, but I had not thought about it at the time. I wanted to create stories that would bring people from the outside, into the fold and help them understand the disease and issues that PALS and CALS face as well as the high points, or moments of inspiration. Which comes to the other point made...no one wants to read about sadness and hardship. I had considered that also, so I wanted to try not to focus on the bad, but instead on the good...in people and in life.
I know about Stu and promote, assist and am still mad that he didnt get the pepsi contest...both times. Really miffed and boycott the stupid drink. However I am from Canada and wanted to start local only because I am not sure how successful the writing project would be and also because I know that the local ALS Society focuses on assisting CALS and PALS (as Stu does in the US) and isnt injecting mice for more than ten years without success (not mentioning names) or funding things that may or may not lead to anything relevant.
My plan was and is that if this idea were to be successful, Stu should be considered as the US recipiant as I believe in what he does and why he does it. Not sure about much of the rest.

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Old 03-20-2011, 12:35 AM #15 (permalink)
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Default Re: Book Idea

I will add that on Hope for Joy - I am asking for stories and poems from people from various experiences, not only ALS. However, it is for awareness and raising funds toward those with ALS, and it needs to bring awareness of the disease.
However, perhaps there is a way of taking a few stories from here and adding them? Not sure, just thinking out loud. I think that if it were a pooled effort, then I would be interested in talking about who should receive funding and how that would look. I plan to write this book, one way or another.
As an aside, almost 20 years ago Joy gave me a polished redwood writing box with "Novel" engraved on it. She said that one day I would write a wonderful book. I think a book that raises awareness and helps those with ALS would be a wonderful book>
Regarding publishing and editing, would love to hear your thoughts, Rosheen. I was prepared to selfpublish and the ALS Society was prepared to help market, but that may have limited reach. I am also a terrible self-editor...this I know.
This is where I have the info for what I currently have online and have received several great stories thus far.
http://www.hopeforjoy.ca/writing.html

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