Quote:
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.
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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."