Wow there are some big hitters on this forum. All people who have found fulfilment in advocacy and contributed so much. And Perry you should know by now that for most of us you are the Godfather of Advocacy. When Marlon Brando said he was "disappointed" everyone shook at the thought of being disloyal to the head of the Corleone family. When you show disappointment we ........ well we also shake and feel disloyal!!
Please don't ever be sensitive about perceived breaks in the ranks. I know I have only been on the periphery but perhaps that gives me a better view of things. You must know that you are held in the highest regard by so many people and Pipeliners has done more than any other single patient-run organisation to give voice, hope and credibility to patients.
Your wisdom is beyond reproach and you have been and continue to be an inspiration to us all.
So please no horses heads on my bed!


Thank you for all your encouraging responses to my post. As my suggestion is slightly removed from the "state of PD organisations in the US" I might take it to another thread. My thought was really to have a structure for the global database so that each member country or region could take responsibility for their own database and communicate messages and/or surveys initially which then fed into the steering group.

Chris and I could handle UK for instance, Fulvio Spain (?) and I know through my EPDA connections patient reps from most other European countries. So if Europe fed into me and you got the USA sorted out and appointed one or two people to co-ordinate the project. Then initially I would propose we also approach Canada, Australia, New Zealand and any other countries this forum extends to. I bet before too long we would have amassed access to a huge database of patients.

This would give us enormous power as a group to deliver clear messages to the Press about the Parkinson's patient views on a global scale and also to disseminate important information to patients. It could also be used as a rallying cry; a global call to action. Imagine if we had had this resource in the GDNF debacle.

The key will be not to abuse the database; to use it only for matters of absolute importance. That way it becomes like the "Batphone".

It will also be crucial for us to take a sensible and unpolitical approach to the set-up process - always remembering the big picture. I, for instance, am quite happy not to be involvced in the instigation of this - I just think the facility would be amazing.,

Show of hands for support? Any further ideas? New thread?

Tom