[reverett123]

I've been meaning to call but life has been a little rough here. Beginning to settle down, however, and will try to reconnect this week.

Glad to have you.
-Rick

[Jaye]

This old advocate's advocate is pleased beyond words to see our leaders joining up. I see sufficient harmony here already to generate optimism in the ranks.

An all-patients roster with as many names as possible is something that has worked for me in a much smaller population (non-traditional students at a state university). Being able to say we had 300 members instead of just the 25 that were active opened a lot of doors and bought a lot of chairs. I would be happy to see it happen without waiting for another expensive trip.

And 58 members of my mailing list agree with me. (Just as soon as I compile one, LOL.)

Jaye

[Suffolkchris]

Talking of Scotland, take a look at what just one PWP who lives and works there (36 years old and dx only a year), has acheived on his own in a very short period of time. Particularly the media coverage he has attracted in the last month.

http://www.wobblywilliams.com/

Also Tom's suggestion about a simple global data base of PWP has enormous potential across a huge range of PD fronts.
Take the excellent "Pennies for Parkinson's" USA based initiative and how easily it could become a global fund raising initiative with such a data base.

Chris

[reverett123]

http://grassley.senate.gov/public/in...5-6a247f4919ff

"Legislation to Set National Standard for Transparency in Drug and Device Industries...

...Under legislation proposed by Grassley and Kohl, payment information would be disclosed to the public via a searchable, online database. Estimates indicate that the drug industry spends $19 billion annually on marketing to physicians in the form of gifts, travel, meals, and other consulting fees. ..."

Here we have two US Senators addressing one of "our" issues. A database could be used to generate letters in support.

[jeanb]

Nice to hear from you again.

Excellent suggestions!!!

talk soon - Jean

[paula_w]

Splanton is a new member and unable to post a link here yet and came upon a post on the listserve that is ten years old. It brings to mind the truism that those who don't learn from their mistakes are condemned to repeat them.

http://www.parkinsons-information-ex.../msg01552.html

paula

[lurkingforacure]

I am so glad to see this and actually read Merck's letter to the Senators.... could not help but notice the exceptions to disclosure that Merck mentioned....those small, trivial items....I see lots of little things getting pushed under a rug and not having to be disclosed. Not that I think a doctor should have to list every pen or notepad he gets from a drug company, but one man's "insignifiant token" is another man's trip to hawaii....I 'd like to see the details of what all is exempt from disclosure, anyone have access to that?

[Splanton]

Thanks for the translation service! Stan

Originally Posted by paula_w

Splanton is a new member and unable to post a link here yet and came upon a post on the listserve that is ten years old. It brings to mind the truism that those who don't learn from their mistakes are condemned to repeat them.

paula

[myownarcadia]

Dear friends and "travel mates" in PD.
I've recently discovered this forum and I'd like to add my modest opinion about the main issue.
I think the like a part of the "sentence" of suffering PD we must face this lack of unity.
Don't think that over here in EU there is any difference.
Maybe it's part of the so called "PD Profile" to prefer wasting our energies fighting between us instead of against PD.

This analysis moved a group of PD patients in Spain to built a new portal devoted to PD called "Unidos contra el Parkinson" (Together against Parkinson's).

We do believe that never mind who is going to get the golden medal, what it's really important is winning the match.

So we support with our modest possibilities any action or initiative we consider aimed in the right direction, no matter where they come from.

We all have ONE strong enemy to fight with, we don't need any more of them.

Because our only chance to win such a battle is fighting "Together against Parkinson's"

Regards

Fulvio
42 ys / 3 PD

(unidoscontraelparkinson.es)

[jeanb]

Fulvio

Bienvenidos a NeuroTalk. Somos todos unidos contra el Parkinson aqui!

I have visited your website. It is a wonderful resource for all.

Yes let's all fight against this disease - no matter where we live.

Buena suerte,

Jean B