Quote:
Originally Posted by Todd
Trying to recover from the YOPN in Atlanta and especially the travel, which has made my mind foggy and my body achy.
And trying desperately to keep up with this thread I started and the multitude of directions it has taken.
Despite all the great ideas generated by my post, my personal opinion is based on my original post. How do we get the PD organizations to at least come together enough to create a national, if not global, joint awareness campaign?
How can we, as people with PD, put the pressure on them to realize how important this is to everyone involved?
How can we use the enormous power we have in a positive and productive manner to enact much needed change, first through a joint awareness campaign?
In my mind, this would be the beginning of many great things for our community. But it will go where it needs to go...
Fight the good fight.
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Todd - welcome back! It would be great to hear about the conference.
Sorry we've gone astray from the thrust of your original post. In some ways we are talking about 2 distinct topics, org unification vs. the patient voice.
I think the reason the patient voice topic took off is because there is very little we can do as patients to unite the orgs in any meaningful way unless we present a united front ourselves. The "database" idea is an attempt to organize in order to do just that.
I think we should survey the patient/caregiver community on the topic of organization unification - like the Harris survey a couple of years ago that produced the "surprise" news that patients were more troubled by the non motor symptoms of PD than by the motor symptoms. The results of that survey had tremendous impact. This new effort at patient unification will provide a platform for those kinds of activities. If we could find a way to do it sooner, I'd be up for that!