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.

East Coast time right?

[bandido1]

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



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?

[paula_w]

yes, maam. Hope to see you there.
paula

so, thats 1 pm pacific?

[paula_w]

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

[CTenaLouise]

I will try to be online...see youall there...
sorta? ;)

[paula_w]

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

paula

[paula_w]

i'm quoting cyndy below because i like how she stated it when she connected a few dots about where we are headed thus far wth this project.

i wrote to Katie Hood at MJFF and stated the need for sponsors to pay for pwp to get DNA testing. NIH does it, but does not provide results. i informed her that we are developing a data collection project, but not duplicating PLM. [Patients Like Me] I mentioned that we would like to promote DNA testing in a big way with a video and celebrities.

Katie responded favorably, but not specifically, as would be expected. MJFF is also preparing for electronic data to be used in a big way and they are developing surveys to gather their own data. DNA testing alone can only be maximized in usage along with other data to mine [phenotypes] for other conditions, exposures, etc. before onset of pd. Thus patient data collection is just as important for DNA testing to yield maximum benefit. She asked that we keep the dialogue going and keep them updated on specifics as our project develops.

Cyndy [Shake 'Em Up] sent me a pm this morning saying:

I finally get the idea. Great! Gene info + history = minefield of info for researchers. Ahah! I see the light. Mue Bien! Fantastico

So we all are beginning to compehend what we need better. We are working on an idea now for our own original project here at neuro talk, and the discussion at this point is about getting researchers to take us seriously and to communicate in some form with us. More specifically, researchers and medical community [including grad students] from other discliplines related to pD other than neurologists - e.g. endocrinologists. We want to create a "think tank" [quoting Rick]. Format is in discussion and to be determined.

that's about it for now
paula

[paula_w]

Hi all,

Would everyone please take a look at this URL on free conference calling? It's international. At first skim, it looks like local long distance rates would apply so it would cost a little but not much to speak of. I would like to have the next meeting on Monday using this if possible, unless someone knows of a better service.

We need to let people explain much more about things like wiki - we are getting too far along to attempt to type it.

http://www.freeconferencecall.com/prodfreeintl.asp

Need your replies!
thanks!
paula

[Jo*mar]

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[Abasaki]

Hi all...
I apologize for the interuption...

I don't know how many people you would have on a conference call but wanted to pass along that Skype has free conference calling.

I believe up to twenty-five (25) people can conference at one time.

http://www.skype.com/allfeatures/conferencecall/ (http://www.skype.com/allfeatures/conferencecall/)


Best wishes to all!
:hug:
Abbie

[Abasaki]

oops... looked like Jo posted as I was typing my post...

sorry for the duplicate info...

[paula_w]

wow thanks! except now we have to make a decision...lol Do you have a favorite? Or know which is the easiest?

This group is just taking form and there are already more than nine, but thanks for the rec. i have heard of Skype and never used it.

paula

[Abasaki]

I have not used any of the others but I do use Skype and have not had any troubles with it at all. I talk with friends all over the world.

I have a friend that uses Skype for conference calls every day... They must not have any problems with it as it's for their business and I'm sure they wouldn't continue using it if they experienced any problems.

:)
Abbie

[bandido1]

Why not just contact them, ask if there are any costs/fees, hidden or otherwise and if so,ask them to waive their fees and take a charitable deduction?

[paula_w]

i see that skype requires over the computer calls with a microphone and headset. I just spent $200 reformatting my computer and need a new mic. I don't think i can be ready for a mic by tomorrow.

So.....can we handle one more chat? monday, tomorrow? at 4:00 pm ? I'll be there unless we want to pay for calls. freeconference.com really isn't free- it is the same as a long distance call.

i"ve spent hours on the phone getting my laptop under control - it was full of spyware...so shopping for a mic isn't on my priority list today - lol

paula

[paula_w]

Getting good ideas through email, hope you can make it to chat. If you'd like to email me it's:

plwitt8385@aol.com

paula

Monday, 4:00 p.m. ET
We can decide about what to use for conference calling, see who has skype access, etc.

thanks again!

[paula_w]

We are going to try a private forum to continue this project, which continues to take shape. Those who have indicated interest will automatically be enrolled; but this group is open to everyone who wants to participate. You can't lurk tho, to read it you must join. So PM Rick or me if you'd like to join.

There can be problems getting a large group to voice chat over the computer. Conference calls aren't really free, even when they suggest it in their name. So we are going to keep a running conversation going in the private forum. IF you do participate , may I ask that you check the forum daily to keep things moving. There will be polls for consensus, etc. that need to move along.

We need volunteers to do research, work on a calendar, write and create a registration that will become an email list, write polls and surveys, form a few working groups and hundreds of medical contacts.

The goal is to create a think tank that promotes cross discipline communication and data sharing. We hope to come up with new research ideas or new data from fields outside of or in addition to neurology.

Getting researchers and doctors to participate will not be easy. We need profoundly innovative suggestions to get them to do so. So far suggestions have included interviewing them and putting the interview on line, which would explain the person's area of work as a possible PD causal/connected factor. This is how contributors could initially contribute, in the hopes that discussion will continue. A suggestion was to have liasons who are medical assistants or grad students. The interview could be conducted by phone, email , through a survey.

- anyone who attends a research hospital , in clinical trials, your own doctors, etc. should ask them if they know of anyone who is interested in pD causal factors other than neurological. Ask them to recommend any researcher or doctor or grad students, etc. who may be interested in contributing.

Of course, the ultimate objective is to make it self-perpetuating.

I'll wait a week and see who comes into the forum. Then Rick will have some items for research by those who are interested. Until then, the posts can be about anything - no such thing as a stupid idea.

Don't sit on your ideas.

thanks all,
paula