I would say both. The advocacy list comes first. Jean has already set up the basic infra-structure. This is a simple and very effective 1st step. I want to be clear that my preference for collaboration with the PD orgs, does not mean any opposition to a unified patient voice. In fact I had sent out an email prior to the start of this thread voicing concern that the overlapping advisory boards would become more loyal to their home organization than to the interests of PWP, and reinforce the existing structure of PD organizations, which by the way is far more coordinated than when I began in this business 12 years ago, but still leaves important gaps in research and services to PWP in the USA. Bringing attention to and addressing these gaps would be the goal of the PWP advocate network.

The patient data base is my extension and expansion of the first step to a broader necessary step for improving therapeutics development and patient centered health care. This goal will benefit from the success of first step and will build on it to further empower PWP. the second goal takes some resources, which we are still expecting from a non-medical corporate foundation grant (the funding has been delayed again sorry to say, but each delay of the half dozen changes and delays, so far has resulted in a stronger more sustainable proposal). I cant say any more here, but there are a number of encouraging initiatives that I could use help on. This is where the volunteer approach is weakest (getting help for tasks that require special talents).

Perry