[Todd]

It is exciting to see everyone so fired up, but to be honest, I am concerned of the direction this is headed.

There is much talk about "giving the researchers what they need" and "clinical trials" etc. To me personally, this is what the PPP exists for. We don't need another group overlapping what's already being done.

My initial thought was to get the PD community fired up to start putting extreme pressure on the PD organizations to get their act together and create a unified marketing campaign to bring much needed awareness of our disease to the general population. Like Stand Up To Cancer, like breast cancer awareness, etc. Where is our voice in this?

That is the direction I originally intended and one that I will continue to pursue.

Where you all take this thread will certainly benefit the PD community in the long run, but it's not the mission I suggested or signed on for. I'm all for thinking big and out of the box, but we must learn to walk before we can run.

Fight the good fight.

[indigogo]

Originally Posted by Todd

It is exciting to see everyone so fired up, but to be honest, I am concerned of the direction this is headed.

There is much talk about "giving the researchers what they need" and "clinical trials" etc. To me personally, this is what the PPP exists for. We don't need another group overlapping what's already being done.

My initial thought was to get the PD community fired up to start putting extreme pressure on the PD organizations to get their act together and create a unified marketing campaign to bring much needed awareness of our disease to the general population. Like Stand Up To Cancer, like breast cancer awareness, etc. Where is our voice in this?

That is the direction I originally intended and one that I will continue to pursue.

Where you all take this thread will certainly benefit the PD community in the long run, but it's not the mission I suggested or signed on for. I'm all for thinking big and out of the box, but we must learn to walk before we can run.

Fight the good fight.

Todd - I wish you'd take another, closer, more careful look at was is going on here. The effort to create a scientific database for research is being pursued on a separate track and there has been very little talk about clinical trials. What we are attempting to do is create a united patient voice for advocacy. How can patients be expected to "pressure" or influence anything or anyone unless we can show a unified front?

Is pressuring the organizations to unify on anything really the most effective use of our time, or is it finally finding our own, unified voice and using it to promote PD awareness on a global scale? Personally, I'd rather see the orgs have a united research front before promoting a united awareness campaign; the orgs have the power of fundraising for research in their hands - I wish their scientific boards and research budgets were unified.

The patients are taking the lead on unification. We can lead by example; flex our voice and our power (getting "fired up"), and do constructive things for PD. If we do it right, the orgs will follow. And we have a better chance of promoting awareness than we do in influencing research at first - the research will come if we get the scientific database right.


AJ & Sheryl - I think Sheryl meant that using just "Parkinson's" rather than "People with Parkinson's" in the title indicates a broader coalition. What does everyone think?

AJ - I think your edits are great. I like the sensitivity to the other orgs.

People with Parkinson's Global Coalition or Parkinson's Global Coalition

AJ once proposed "United Parkinsonians" in a conversation we had. I like the acronym "UP" - very positive! Or how about "United for Parkinson's"?

Lindylanka, AJ, et al: we could use the original Latin, "credo" or, as Webster's defines it "our guiding principle."

[SherylJ]

[QUOTE=indigogo;349008]Todd
AJ & Sheryl - I think Sheryl meant that using just "Parkinson's" rather than "People with Parkinson's" in the title indicates a broader coalition. What does everyone think?

Thank you, Carey, that is exactly what I meant. I would hate for potential supporters to see our group name and feel like they would not be welcome.

sheryl

[Todd]

[QUOTE=indigogo;349008]Todd - I wish you'd take another, closer, more careful look at was is going on here. The effort to create a scientific database for research is being pursued on a separate track and there has been very little talk about clinical trials. What we are attempting to do is create a united patient voice for advocacy. How can patients be expected to "pressure" or influence anything or anyone unless we can show a unified front?

Is pressuring the organizations to unify on anything really the most effective use of our time, or is it finally finding our own, unified voice and using it to promote PD awareness on a global scale? Personally, I'd rather see the orgs have a united research front before promoting a united awareness campaign; the orgs have the power of fundraising for research in their hands - I wish their scientific boards and research budgets were unified.

The patients are taking the lead on unification. We can lead by example; flex our voice and our power (getting "fired up"), and do constructive things for PD. If we do it right, the orgs will follow. And we have a better chance of promoting awareness than we do in influencing research at first - the research will come if we get the scientific database right.[quote=indigogo;349008]



With all due respect, I have read each and every response in this thread (a thread that I initially created remember) and I stand by my original statement and intent. In my personal opinion, the direction is headed the wrong way, and while I commend the effort, it wasn't what I originally proposed with the opening statement in this thread.

I am all for a unified patient advocacy front. But I believe we are trying to put the cart before the horse with the plans and ideas I am reading about. With the involvement of many core Pipeline people, whom I greatly respect, I again say that the direction this has taken is more suitable for a PPP project and not a larger scale effort from our community.

I still strongly believe that the first positive step in the right direction is for us to push the orgs to come together and create a unified public marketing campaign to create much needed exposure for our disease. With increased public awareness comes increased public support, both financially and politically, and that benefits everyone involved.

Once we make our voices heard in the arena of public awareness through a joint effort marketing campaign, the rest will follow. Trying to recreate the wheel is pointless. Look to those that have gone before us and had great success and model our approach accordingly. I've provided examples of this and continue to wonder why our orgs can't do the same.

It's a fight I'll continue to pursue. You want to go a different direction, while it's not what I originally proposed, I hope it turns out to be successful. I mean really, the more sides we can hit them from, the better.

But I only have time, strength, and energy for one grand fight and I'm choosing public awareness, because the overall benefits to everyone in our community are phenomenal, as other organizations before us have already proven.

Fight the good fight.

[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