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| Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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04-06-2009, 09:03 AM
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#11 | ||
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In Remembrance
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Most of us already know Gail and ATOSA. But thanks for bringing it up in case we hadn't checked it out and yes, it's bookmarked.
Nothing to do with ATOSA - But remember that with "nonprofits" this just basically means that at the end of the year if they have extra money it can't go to the "owner" of the store. The can still pay employees ANY figure they feel like, they still get advertising money (those ads you see flying by on the site pay the org for that) and as far as I know they have no specific laws or orders on having to pay for studies, help people, etc. So just the word "nonprofit" doesn't mean you stop there, there are sites that show what nonprofit spent their dollars on and they have to disclose financials to the state agencies but you've got to know how to reach those to do a full "due dilligence" before you contribute. I figure, I'm sick, I don't have money to contribute, and until we find a team of doctors who are going to put together a cohesive and not redundant set of testing for us, or have a specific plan to get the word out, then when I am feeling better, I have my own better ideas for what I've got in store. I just can't tell you because the timing is important. So I started the book and first thing a horrid depression hit me. How can I get through it knowing the "ending" (no cure.) Until I've got my ending worked out I don't want to write a book that ends up putting me back 5 years.... I know you'll understand. And, OF COURSE, I will ask you all, in plenty of time, if you want to get involved and put in your story and I'll be more than patient. This is a hard process!!! I think my first job will be to take my "Top 5 Symptoms" (which I did first bring up) (we get so cranky about who thought of what, I don't want to be one of "those") but I want to write to EACH of my 38 docs and tell them that they treated me, did or did not recognize neuro TOS, and here are the Top 5 and my favorite surgeon and they simply cannot keep pushing patients thorugh their office with this time bomb coming. That's all I can muster for today. IF any of you could get someone to drive you to my house in Rancho Mirage off of the 10 freeway we could have a meeting adn really talk about these issues. I am always open for us, I just can't travel and then talk... |
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| "Thanks for this!" says: | (Broken Wings) (04-07-2009) |
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04-07-2009, 07:53 AM
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#12 | |||
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Member
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Feel free to use anything I've posted here.
 Anne
__________________
. "It is what it is." |
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