I want to clarify my message and respond to some of the comments and suggestions that have been raised.

First, Tom, I had intended to respond to your always relevant and insightful thoughts, but I ran out of functioning brain cells and forgot. I do like the idea of creating a PWP data base for advocates world wide. I would like to take this idea several more steps to further empower PWP by getting additional data on patients, and implementing personal health records and providing targeted individualized education and information, and otherwise provide information support to doctors and patients for patient centered health care.

"Patients like me" website has been written up in the NYTimes, and hailed as a new paradigm in the internet age by people I respect in health policy conferences at IOM (Institute of Medicine, National Academy of Sciences) that I attend regularly. When I have looked at the Patients Like Me site, I have been underwhelmed by the PD section. Am I missing something, or are my standards to high? I think we as PD advocate leaders can do a better job. It will take some resources and staff to do this correctly.

The original PPP concept included much of this activity, but with no resources, the concept has remained on the shelf. This to me is a high priority task and my intention is to focus energy and resources that I can muster on this topic. As always, I invite anyone with an interest to join the PPP to participate (www.pdpipeline.org). As I said previously, PPP is probably not the right vehicle for this effort, but it is available now.

I have some other interesting ideas cooking, so Tom let's talk on Skype to share and update each other. Also, thank you for anointing me as head of the family. I like power, but not for its own sake, rather for the ability it gives you to open doors and be listened to and heard. It helps to understand the situation, and to make consistently correct judgments, which I have been increasingly been able to do with help and coaching from my colleagues. While this PWP power should be viewed as an asset, it may also be a threat to some so I just become a bigger target (to borrow from another fairy tail) for those sitting in their castles saying "mirror, mirror on the wall, whose the most powerful of them all." The risk of a head in the bed would be my head.

(Tom, I am curious why you have used the godfather analogy and what I said to make you think I was disappointed)

In response to those of you who want to start a patient only organization with no money, the lessons learned from the PPP indicate to me that we need some money and full time, healthy staff that is responsive to PWP to manage the volunteers in order to accomplish multiple tasks simultaneously. From what I have heard from the grapevine, The PD organizations view this thread with alarm, because it challenges their moral authority to conduct research and speak on behalf of patients' interests. I think it is good challenge the complacence of the organizations, to take our concerns about the failures of science and regulators to confirm what we know from first hand experience in clinical trials to be true.

I want a unified voice for patients and a unified voice for PD organizations and will support any movement to create such an organization, if asked, with my experience and advice to those who want to form such an organization.

What I would rather see is the PD organizations collectively create this PWP council, recognize the value of the independence of PWP advocates and take direction from it, nurture it, sustain it, not control it for the sake of other constituencies, and reap the benefits for patients in the creativity and focus on real issues that results. This is kind of relationship that I want to set up for PPP with PDF

Perry