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

[KaraM]

OK, Vicki (and everyone else), here's a fundraising idea...

 

We could each write our story and create a collection of PANDAS/PITAND stories. We could designate the funds from the proceed to go toward Dr. C. to use to pay for people who can't afford the test.

 

Call me crazy...just a thought....

 

Kara

[thereishope]

Actually I think someone once suggested that on here before a long time ago, maybe EAMom? I think that's a great idea. Want to be in charge:)

Edited July 21, 2010 by Vickie

[EmersonAilidh]

I would be more than happy to contribute!

[KaraM]

You know, I'd be happy to collect the stories and put them into one file, maybe even organize them somehow by major symptoms with a table of contents so similar stories are together and easy to find. However, I think it might to have some sort of template/formula for telling our stories (then again, maybe they are all too different to do that). What do people think? Any writers out there that could provide a little guidance about the best way to write a story? Should I even care about that.

 

I'm not sure publishing a hard cover or paper back book would be the best way to go - only due to cost considerations. But perhaps we could put a pdf file on a site to download for a certain price...

 

any other thoughts/ideas?

 

 

 

 

Actually I think someone once suggested that on here before a long time ago, maybe EAMom? I think that's a great idea. Want to be in charge:)

[peglem]

You know, I'd be happy to collect the stories and put them into one file, maybe even organize them somehow by major symptoms with a table of contents so similar stories are together and easy to find. However, I think it might to have some sort of template/formula for telling our stories (then again, maybe they are all too different to do that). What do people think? Any writers out there that could provide a little guidance about the best way to write a story? Should I even care about that.

 

I'm not sure publishing a hard cover or paper back book would be the best way to go - only due to cost considerations. But perhaps we could put a pdf file on a site to download for a certain price...

 

any other thoughts/ideas?

 

 

 

 

Actually I think someone once suggested that on here before a long time ago, maybe EAMom? I think that's a great idea. Want to be in charge:)

Well, I'd appreciate some basic guidelines and some critique of my story (how its written, do I need to clarify, etc) before publishing. I'm willing to try, though the thought of revisiting the early days is scary.

[thereishope]

I'd have to think on this a bit, but a sample of ways could be organized by moments of despair, recovery, letters to our children, turning points,section written by PANDAS kids or drawings, etc. I think a reader may want to learn but also feel as though they are part of the journey so by have different sections being devoted to different stages of PANDAS and PITAND would be nice.

 

There are publishing companies that deal with medical based personal stories, so don't rule out an actual book:)

Edited July 21, 2010 by Vickie

[EmersonAilidh]

I'd have to think on this a bit, but a sample of ways could be organized by moments of despair, recovery, letters to our children, turning points,section written by PANDAS kids or drawings, etc. I think a reader may want to learn but also feel as though they are part of the journey so by have different sections being devoted to different stages of PANDAS and PITAND would be nice.

 

There are publishing companies that deal with medical based personal stories, so don't rule out an actual book:)

 

I could help with the P.A.N.D.A.S. kids part!

We could do it by stages... Or just by characteristics.

Taking certain symptoms? Or by going "Beforehand" "Onset" "Remission" "Flareup" "Treatment" etc....

Or, ya know, everyone could just contribute something. It doesn't have to be sectioned thematically.

[3boysmom]

Think it is an idea to consider. I have our experience documented daily in great detail and our ds10 began to write/journal his experience. He titled chapter 1 "The Day the Nightmare Began!"

 

Here are 2 other thoughts for raising money that I have been pondering for a few months.

 

#1) Getting in touch with Howie Mandel: OK, now that you have stopped laughing...he writes about how he remembers the day that his OCD began and that he was bit by a sand flea at the beach....Anyway, left me wondering if he had ever heard of PITANDS or PANDAS. Seems like a unique "cause" that would be something he may be pationate about. (How on earth do you get in touch with famous people?)

 

#2) I saw Warren Buffet's (Spelling?) sister on a talk show recently, she has this organization where people submit requests for money/donations and a group of her people review them all and decide whether or not to help. (I will look up the title of her book and name of the organization.) Maybe a few PANDAS stories to her fondation may get somewhere.

 

I know both of those idea are "out there", but they keep popping into my head. I just hate thinking of the kids that can not afford to get help! Keeps me awake at night!

Speaking of that, I should realy go to bed, it's past midnight. Goodnight

Edited July 21, 2010 by 3boysmom

[LNN]

I think Shelia's book Natural Treatments for Tics and Tourette's: A Patient and Family Guide is a good guide. You want to share stories in a way that readers can see themselves and really get a flavor for the struggles. But I think you also have to offer hope and "answers". I personally couldn't read a book that made me cry but then didn't give me some sort of suggestion for what do do about it.

 

Each story would also have to have some sort of maximum length. It is really really hard to sum up the nightmare. So much has to go unsaid. My personal suggestion is that each story that was included would have to have one or two main points plus a "take away" message. Otherwise, I think the stories would only be interesting to our little community.

 

Maybe Shelia could suggest a contact person with editing/publishing experience who could give some mentoring advice.

[thereishope]

Howie Mandel won't get back. I desperately tried that route for the pepsi refresh contest.

 

Think it is an idea to consider. I have our experience documented daily in great detail and our ds10 began to write/journal his experience. He titled chapter 1 "The Day the Nightmare Began!"

 

Here are 2 other thoughts for raising money that I have been pondering for a few months.

 

#1) Getting in touch with Howie Mandel: OK, now that you have stopped laughing...he writes about how he remembers the day that his OCD began and that he was bit by a sand flea at the beach....Anyway, left me wondering if he had ever heard of PITANDS or PANDAS. Seems like a unique "cause" that would be something he may be pationate about. (How on earth do you get in touch with famous people?)

 

#2) I saw Warren Buffet's (Spelling?) sister on a talk show recently, she has this organization where people submit requests for money/donations and a group of her people review them all and decide whether or not to help. (I will look up the title of her book and name of the organization.) Maybe a few PANDAS stories to her fondation may get somewhere.

 

I know both of those idea are "out there", but they keep popping into my head. I just hate thinking of the kids that can not afford to get help! Keeps me awake at night!

Speaking of that, I should realy go to bed, it's past midnight. Goodnight

[tired mom]

I think Shelia's book Natural Treatments for Tics and Tourette's: A Patient and Family Guide is a good guide. You want to share stories in a way that readers can see themselves and really get a flavor for the struggles. But I think you also have to offer hope and "answers". I personally couldn't read a book that made me cry but then didn't give me some sort of suggestion for what do do about it.

 

Each story would also have to have some sort of maximum length. It is really really hard to sum up the nightmare. So much has to go unsaid. My personal suggestion is that each story that was included would have to have one or two main points plus a "take away" message. Otherwise, I think the stories would only be interesting to our little community.

 

Maybe Shelia could suggest a contact person with editing/publishing experience who could give some mentoring advice.

Maybe contact Dr. Kenneth Ginsburg. I know he has published books and he specilizes in behavioral issues that impact upon physical or emotional health. He is not a Pandas Dr. I have personally met with this man and he is amazing. Who knows, maybe if we contact him he may want to board this train. Just a thought...

[forjpj]

Warren Buffet's sister lives in my small city, and is always donating. Thanks to her we have a city pool, and she has made it free to all city members for the past 3 years. My local paper should be doing an article on pandas soon, just waiting on there schedule. I've given them the contacts, waiting on the reporter to have time. She will definitely see the article, but in the meantime I can see what I can figure out!!

[forjpj]

Oh, and I think the collection of stories is an excellent idea, and I would be willing to write ours down too!!

[NancyD]

I'm happy to help and contribute. I have written two books on ASD (published by Random House and Perseus Books) and I have an agent. My second book is part of the FIRST YEAR series and I have thought about doing another book specific to PANDAS and other related disorders.

 

Nancy

[airial95]

I like the idea, and would be more than willing to contribute. I think doing something in the format of the "Chicken Soup" books might be worth considering. Since none of us writing have any real medical experience, I would be heistant to offer up any real "answers" - but sharing our stories - with both our struggles and successes, while focusing on a message of hope (like the "Chicken Soup" books) would work.

 

Also, my sister works for a publishing company. She's out of the country right now, but when she gets back, I can ask her about costs/options to get it printed as well.