[reverett123]

... to have intentionally avoided getting too deep into this for several reasons. One was that so many knew each other that it seemed a family affair. Another was that there are a lot of leaders in the PD community and just a few followers, so I preferred to guard the bar during the initial discussions.

All to say that I don't know who is who and am not taking sides but would like to support the idea of raising public awareness - point out the value of having an advocate database as a tool to accomplish it - as well as to assist in building a larger database for science. Separate groups if needed but allies.

[harley]

been wanting to comment here and feel one word is holding me back... politics.

still floundering after a hard blow of it.

[paula_w]

Harley,

I don't know what you experienced,[not sure if it had anything to do with this topic] but I do think that we are trying to work out and avoid politics where humanly possible. Putting it this way might help to explain what I mean. Out of over 300 replies to these two threads, very few were negative. Hundreds are helpful. The worst politics are behind closed doors and we don't have any of those here.

just two cents and hope you overcome your hesitancy,
paula

[SherylJ]

Todd, as you already know, there are many roads that will get us to the same destination and each of us should pursue the one that excites us enough to take action. Go for the gold!

sheryl

p.s, You have already accomplished a huge thing by starting this thread and motivating so many people to begin thinking about what power they have and how best to use it to achieve our ultimate shared goal of finding a cure for PD.

"Two roads diverged in a wood, and I took the one less travelled by, and that has made all the difference." robert frost

[indigogo]

Originally Posted by SherylJ

"Two roads diverged in a wood, and I took the one less travelled by, and that has made all the difference." robert frost

Actually, I think we are all hacking our way through the jungle, blazing trails for those who come later! It's a big jungle, Todd - we need more than one road, and can use an extra machete!

[paula_w]

Recapping: I am seeing interest in 3 areas. Advocacy and other data collection (medical,science), along with a marketing campaign.

Work on whichever you like. This thread title can be continued for databases _ and why not start calling for expertise in databases to answer these title questions, remembering that doc john is not available yet and that we are going to start simple with an email db.
A marketing campaign can also be developed by those who want to.

So who, what, et al.

Paula

[indigogo]

I think we've strayed a little off message.

Here are some things I'm thinking about.

1. I think our goal is to find a way to coordinate as patients to promote issues of concern to us independent from outside influence from pharma, or organizations, or researchers (i.e., the PD Establishment).

2. I believe we have a right and a responsibility to do this.

3. This movement of ours is the wave of the future. The reason this has struck a chord with us is because we are not alone. The internet has made it easy for patients to take control of our lives and our care. All you have to do is take a look at the excellent e-patient white paper commissioned by the Robert Wood Johnson Foundation that Paula posted a few comments back. http://www.e-patients.net/e-Patients_White_Paper.pdf

Guess who two of the authors are? Our own Doc John and John Lester, founder of the original BrainTalk.

Just by participating in this forum we are at the fore front of societal change. It's no wonder a kind of "revolution" is taking place here - we're already right in the middle of it! We are lucky to have Doc John's support.

I think that is why the orgs are so wary. They very much ARE the "establishment." There is not a lot of understanding of what the internet is all about; the leaders of the orgs don't spend their lives online; they don't understand the power of internet communities and communication.

I've been worried about offending them because they spend their working hours and more on our behalf. But that does not mean I owe them my life or unquestioned allegiance. We owe it to ourselves to take the responsibility for our own lives, to use our own voices and to assert our own influence.

4. I am incredibly moved by annefroberts' report. Another example that what we are doing is shared by patients everywhere; that we are not feeling a need to find our voice simply because of the PD situation in the U.S.

So take a bit of time to look at the white paper report. It confirms and affirms what we are doing.

In the meantime, I'm going to take a few days off from THIS internet forum while I visit my family in Denver for the Democratic National Convention. I'll be blogging for the Seattle Times; I'm really excited because I managed to score tickets to Obama's big speech at Invesco Field next Thursday the 28th! I'm leaving tomorrow; have a lot to do before I go; I've gotta turn this thing off!

[paula_w]

Recapping: This thread took a turn with Doc John's offer; it began as a call for pwp to unite the orgs, but we didn't really know what was meant. There was talk about evaluating them, etc. etc.

Now we know what was meant, and I guess it may have looked to Todd like his idea was ignored. This isn't an either or situation, but don't you think it's going to take separate leadership? And no politics?

Thoughts?
paula

[bandido1]

Commentary from an old timer: First, I must complement all who are participating. I understand and agree the PD community would be best served if certain of their activities were consolidated . Advocacy can certainly be a collaborative effort among the 7 (or more) . Getting them all to agree on other elements of a coalition will be difficult, if not impossible, as has been suggested by Carolyn in another patient forum. I would respectfully suggest your team focus on fewer tasks initially. Developing a database can be a daunting task. Check out PLM’s () database driving that “for profit” org. Working on incorporation can be equally time consuming, demanding legal counsel, and is expensive. Your Mission Statement exchanges illustrate the effort involved. It took our Fortune 500 Co. almost a year to agree on one! Finally, a simple phrase I first heard with military service and then in the corporate jungle “KEEP IT SIMPLE STU___D”.Brainstorm a few simple approaches to your focus. What about getting PD orgs to jointly sponsor an educational/advocacy presentation like the cancer special being aired by all three networks next Friday? Participate with other orgs in attracting researchers, drug companies, caregivers and patients to jointly sponsored seminars covering a current “hot topic”. Get “60 Minutes” to update its program on the Monkeys In The Middle. Or if they want t do something more current, an investigative report on Deep Brain Surgery. On the spicy side suggest Dateline determine what, if anything the use of Mirapex and/or Requip: has on compulsive behaviors (gambling, porn etc.) And finally, maybe a simple stu__d suggestion like get someone to sponsor a contest rewarding the most creative idea for encouraging joint org projects like yours. Once again, I commend your efforts and wish you all Godspeed. I am near the end of my journey but will continue to assist on this thread if my two finger typing permits!

[Jaye]

Gosh, it's good to see one of the best old forumicans contributing here. Thank you, and keep the advice coming, please.

Jaye

To quote an old friend: "If you want to keep moving, keep moving."