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Old 10-10-2008, 03:23 PM #1
paula_w paula_w is offline
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Default Neurotalk PD Advocacy Issues and Meetings

All,

Doc John will attend our next chat on Monday, Oct. 13, at 4:00 p.m. Another PD chat room will be created for the meeting so do not be concerned if you don't see one now.

Please list agenda items you would like to see discussed, or questions you might have, in this thread. There are some excellent ideas being exchanged via email, and I am certain that with the excellent brains [and some only half brains at that!] on this forum, we will come up with a unique project that is right for this forum.

Many areas have not been deeply explored. We do not want to duplicate Patients Like Me. But there are other areas - psychological [STRESS]. relationships with doctors and, well all relationships - so many things to distinguish us as our own information exchange. Rick has something he has been working on and is discovering that he is not alone in his thinking.

So try to come, the chat log will be saved, so if you don't make it, pm me and I will send it.

Thought it might help to list who attended last week or has been in communication about it:
In attendance: Bandido1; Jaye; Lindylanka; Shake'em Up; RLSmi, myself
In communication: Doc John; Curious; Rick; Olsen; Carey; Perry c; grant r

Scream out if i forgot anyone!
Thanks everyone!
paula
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"Time is not neutral for those who have pd or for those who will get it."

Last edited by paula_w; 10-10-2008 at 04:22 PM.
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Old 10-10-2008, 03:30 PM #2
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East Coast time right?
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Old 10-10-2008, 03:32 PM #3
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yep - thanks! 4 EST.

Quote:
Originally Posted by Curious View Post
East Coast time right?
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Old 10-11-2008, 11:09 AM #4
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Default Advocacy issues and meeetings

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Originally Posted by paula_w View Post
yep - thanks! 4 EST.
I'll try to be there. I was not surprised at Doc's comment. You might want to discuss an earlier suggestion that 23&me would consider a free genetic test if a patient qualifies for their clinical trial. Also, maybe volunteering to poll the NeuroTalk PD'ers in a Q&A format?
One more comment: I saw a 30 second video on Letterman's break time advocating ALS and apparently part of a "CBS Cares" offering. I will try to get more info by Monday. Bob C
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Old 10-11-2008, 12:09 PM #5
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Thanks Bob,

I do want to use the polls; I think talking with Doc John will help to launch this. Another idea from what you said would be to campaign for sponsors to "sponsor genetic testing for a person with PD". Collect an email list of those who are willing to be tested? I don't know if psychologically it's the right time to solicit for anything but there are plenty of people who could afford to pay for one person's DNA testing.

two cents for today,
paula



Quote:
Originally Posted by bandido1 View Post
I'll try to be there. I was not surprised at Doc's comment. You might want to discuss an earlier suggestion that 23&me would consider a free genetic test if a patient qualifies for their clinical trial. Also, maybe volunteering to poll the NeuroTalk PD'ers in a Q&A format?
One more comment: I saw a 30 second video on Letterman's break time advocating ALS and apparently part of a "CBS Cares" offering. I will try to get more info by Monday. Bob C
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Old 10-12-2008, 11:04 AM #6
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so, thats 1 pm pacific?
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Old 10-12-2008, 01:08 PM #7
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yes, maam. Hope to see you there.
paula

Quote:
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so, thats 1 pm pacific?
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Old 10-12-2008, 09:07 PM #8
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Default reminder 4 p.m. EST today, monday

when you sign into chat, don't stay in the lounge. Use the little black arrows at the end of the top menu bar to scroll down to pd chat. it isn't there now but will be.

Cary is planning on attending and has some relevant information about a webcast she attended. This webcast will go online at pdf.org for a year soon. it will possibly have an effect on what we decide to do.

Rick is also pretty sure he can come. OPen to all in pd chat.

Agenda items may include:

DocJohn - what he can do to help us.
Rick' s ideas about a think tank
Carey's findings and info
DNA testing
Future video

This is alot.....may not cover it all.

thanks everyone,
paula
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"Time is not neutral for those who have pd or for those who will get it."

Last edited by paula_w; 10-12-2008 at 09:08 PM. Reason: actually this is sunday but it's almost monday
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Old 10-13-2008, 01:24 AM #9
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Thumbs Up 3:00 pm central... for moi!

I will try to be online...see youall there...
sorta?
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Old 10-13-2008, 05:57 PM #10
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Default Monday, Oct. 13 chat log

ok thought everyone saw the script at the meeting - sorry.

paula
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"Time is not neutral for those who have pd or for those who will get it."

Last edited by paula_w; 10-13-2008 at 08:13 PM. Reason: per member request re privacy
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