Why don't we all write a book - a collection of stories

[KaraM]

Couple of things -

 

Love the poem - forgot to mention that, earlier. Stuff like that could go directly in personal stories - or we could have a section for poetry, inspirational quotes, etc... I know on many sleepless nights I would often recite the Serenity Prayer to myself (over and over) - even though, as I said in another post, I don't qualify as "the biggest believer." (For those who don't know that one, it's "(God), grant me the Serenity to accept the things I can not change; the Courage to change the things I can and the Wisdom to know the difference.")

 

As for the book format, cost, etc. My personal goals for creating this are to provide education/support for other parents (as well as docs, therapists) who think their child may have PANDAS and to create funds for the Cunningham test for people who can't afford it. Someone else mentioned it above, but I would not want someone to be unable to get the book because they couldn't afford it either. I know I sometimes waver about buying books that I'm unsure of, haven't seen. ( I took Saving Sammy out of the library several months ago to read before buying and just bought a copy the other day to re-read and to have on hand to lend out to others...).

 

What about the idea of having it in a downloadable format and a "suggested donation amount," but really make it available to anyone who needs it.

 

There is some talk above, too about a website. I wonder whether it makes sense to have another PANDAS website or to try to collaborate with one that already exists. I have to say I really like the way PANDAS REsource Network website is coming along. Dr. C. is on the medical board of advisors there (so not sure if that's a conflict or not..). Maybe we could talk to them about it. (They also have a "share your story" section, but I don't see any stories, yet). If we made a book with a collection, perhaps it could be part of this website, downloadable with a suggestion contribution, with all contributions going to help fund Dr. C tests for those who can't afford.

 

Gotta go, kids waking up...

 

Kara

[forjpj]

Kara...that sounds like a good mission statement to me!!

[thereishope]

I say whomever is ultimately "in charge" of the project can decide what is the easiest and best way to go about doing this. Yes, getting suggestions, opinions, and being as democratic as you can is good, but it's one thing to have the idea and another to implement it. Kara, since you are taking the reigns, I say you have the final decision. As long as we can bookmark funds to a particular way of spending that everyone agrees on, it's okay with me. I do think the spending needs to be agreed on since that is how I feel the most comfortable sharing my son's life for the purpose of helping those with sick kids that cannot afford tests like Cunningham's or to further Cunningham research. I am very protective of the details of my son's disorder and the heck he went through. I also wish to be able to say that my son's PANDAS journey not be duplicated in any way unless I agree to it. I do not want it to become "property" of any organization.

Edited July 24, 2010 by Vickie

[asatwice]

i would love to contribute my son's story to this project--please add me to your list! (sorry if this is a duplicate post--my first response seems to have disappeared.)