American TOS Association - Devoted to bringing TOS to the forefront of modern medicine....

http://www.atosa.org/main

There's a LOT here - I haven't begun to check it all out! Hoping someone will do a summary report on the laparoscopy/robotic surgery options. Lots to read in the Articles section - I'm trying to be good and watch my time, but it's hard!

I have sent an email asking for more info, specifically a list of the board members, and why funds are going for other causes instead of things like partial internship scholarships, patient assistantship, PR/public awareness campaigns, etc.

I also mentioned our little family, and inquired whether they might could use a [B]patient[B] advocacy wing to help with things such as fund-raising (t-shirts, buttons, etc.), TOS brochures (for families, PCPs), assist with local arrangements for TOS guest lecturers to speak to med students/Drs, that type of thing.

The founder comes from a medical background, has TOS herself. This site may not end up being what we are hoping for, but I think it is a step forward. At this point, all I'm after is information, which I'll pass on directly here. I do know LadyParrot (where IS LadyP??), Tam, Victoria and I have talked in the past about the need for a group that promotes TOS education, research and advocacy - well, this one seems to cover a lot of the bases fairly well, IF it could be worked out, we would only have to take on the public awareness and fundraising aspects, that type of thing, and that would not be nearly as overwhelming.

Anyway, just food for thought, really. Enjoy the site!

Alright, I understand from talking with DiMarie and Jo that the ATOSA founder registered here and raised some fears that this person might be someone other than who she was presenting herself as. That's not the case, if you look at the site. It's way too detailed too be a "scam job", there are Drs. on board, and I have spoken with this woman myself. She has many, many great plans, along the lines that we have spoken of ourselves.

Her story does sound kind of familiar, but is NOT identical to another person's.
She is TOS patient #2 under Featured TOS patients if you take a look. Early in July the Board of Directors should be finalized and will be on site, including Drs and researchers, and a national conference is being planned for next year. ATOSA already is recognized as a non-profit organiztion, but is awaiting tax-exempt status, which should arrive within the next few weeks; when that is in place, sponsors already lined up will be sending in $$, and plans are to focus especially on educating primary care physicians, along with public awareness campaigns including a short national commercial!

There will also be brochures for family members, t-shirts, etc. The Drs and researchers will focus on educating the medical community while TOS Patient Advocates on the Board will lead the Public Awareness efforts.

Now really, does this sound like who you thought it might be?

I was very impressed with the website, and even more after speaking with Gail on the phone. I will watch to see the Board of Directors and tax-exempt status appear in a timely manner, but I do believe this is what she says it is - a TOS patient who got messed around with by Drs and the system and got mad, decided enough is enough and decided to do something about it. The goal of the organization is to make TOS (eventually) as well known as carpal tunnel and fibromyalgia - that's something we all want, right?

Check out the web site, then make up your mind, ok?

beth

Hi Beth,
I don't know why but I'm having a hard time opening up their website.
I opened it up yesterday and it looked great. I should have posted that I
did.
Again, today I am struggling to open the website. Maybe it is my security is
set too high. Yesterday I copied and pasted their info into google and it came up.

Maybe others besides me are having a hard time accessing the website.

I think you do have to change your settings to accept cookies for the main page to download - because of the robotics/laparoscopic surgery download, after you've accessed it once before. You don't have to change security settings to view the other pages on the website however, just the mainpage. You can always dump the cookies at the end of the session if it's a concern.
Hope that helps!

Thanks so much for this info.....there's alot to look over.
It's great.
Thanks

Hi Beth,
I think some concern was caution. The site was not up, no ducks in a row to be posting for support from our forum. I wondered why post here if not even set up such as any other.org site?

ALso, I did PM to Gail, but when there were questions, not mine, asked to verify, just as we would a doctor here to protect the community, she dissapeared as a forum member. I became extremly concerned to motive.

We are a huge family, look out foreach other.I wish gail all the best, but without everything proper, it was unusual.
The cookies...another concern to me.

Maybe what she needs is a top sponser, spokes person, like one of the baseball players or their doctors with TOS to give stronger credibility and visibilaity.
Good luck with the endevour, keep us posted.
Di

God Bless you all.

the site is up, a recognized TOS Dr is on the Board of Directors and the remainder will be announced once contracts are signed. The group has non-profit staus and paperwork is filed for tax-exempt, it is only waiting to be approved and returned which was to have been by June 10, so it could be any day.

And the cookies aren't ATOSA's, they are from the medical group that offers the laproscopic/robotic surgery and again, you can dump them on exiting the site if you don't like cookies.

beth

I'm still working on accessing the entire site.

It's kinda frustrating, maybe I'll contact the webmaster.

I want to read her story and I can't open it !

I made several adjustments to the cookie settings.