Neurotalk PD Advocacy Issues and Meetings

[paula_w]

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

[Curious]

East Coast time right?

[paula_w]

yep - thanks! 4 EST.

Originally Posted by Curious

East Coast time right?

[bandido1]

Originally Posted by paula_w

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

[paula_w]

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

Originally Posted by bandido1

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

[harley]

so, thats 1 pm pacific?