In a discussion at the Parkinson Pipeline Project meeting yesterday regarding the response to this thread, I pointed out that there was a similar patient empowerment effort previously which no doubt inspired Stan with all his research skills to find out more and keep us all informed as he has been doing for a number of months for the 'Pipeline Project' list. Between Stan and Carolyn and other trackers led by Linda Herman, the Project keeps up with all the news and maintains a data base of up to date information on all treatments in the pipeline (to receive this information, just sign up at www.pdpipeline.org). It has taken a group effort to fill the role previously played by Murray Charters for PPP (may he rest in peace).

Stan's link to the report of the first meeting of the "PD Patient Congress" which was later named "Parkinson's Alliance" tipped the balance for me to respond to this thread which raises issues very important to success in the advancement of PD research. Reading the PARKINSN list post reminded me that I am probably the only PWP advocate who attended the Miami meeting who is still active in National PD advocacy. I guess that makes me an old timer (I certainly feel like one), and gives me license to offer sage advice (LOL)

Past Experience. Carol Walton who for many years has been executive director of PA, was one of the organizers of the Miami meeting, which began as an effort to empower patients. The effort was fatally flawed from the beginning because it was set up as the exclusive domain of one national PD organization to somehow sponsor the voice of patients, and much of the meeting was spent arguing that point with one strong delegate (caregiver). I agreed with this outlier, but was more willing to compromise for the sake of moving ahead. Soon after this auspicious start the mission changed, and the organization was taken over and funded by the Tuchmans (Marty and Margaret who is a PWP) who were interested in seed grants for scientists and matched all contributions. The PA uses Carol's skills to plan fund raising events including the Unity Walk and Team Parkinson, featuring John Ball at the LA Marathon. All of these are good for science, careers, and PD basic research, which I have always valued highly and never criticized, but they are a far cry from the original intent.

I myself advocated strongly for NIH research funding and played instrumental role in opening collaborative relations between the PD community and NINDS in 1999 and in creation of the NIH Parkinson's Research Agenda (2000-2002), which was the most important PD research plan ever. Then I began working with the FDA which quickly became a very compelling agenda because no one else was addressing this in the PD community and the complexities of the 15 year pipeline to realize the benefits of science seemed to me to overwhelm any other consideration for someone with PD now. Fortunately, I found other PWP who understood the ramifications of this inconvenient truth and helped get the message out. Now most of the PD organizations are working where I initially found an open field, so we have succeeded to some extent. However, I feel that the voice of the patient is still needs to be stronger and more widespread.

The advent of Patient Advisory Councils by PD organizations is also a sign that our message is being heard, not just for PD but throughout the health care system. Although I think that part of the intent is to replace truely independent patient groups like PPP, with Patient input that they can better control, I see this trend as positive, because at least they are listening. My only fear is that PWP impact will be diluted if separate advisory groups divide the patient interests the way that separate orgs divide the community's interests.

Pipeliners. When I read through the 13 pages of response I realized that the majority of the posts were from active Pipeliners or formerly active Pipeliners. I dont know what that says about me or the Pipeline Project, but I have noticed that all current and formally active PPP members are able to think and make their own judgments about what is in the interests of patients, and all are willing to speak up firmly and politely (with some notable exceptions) for the Patient's perspective.

I am not suggesting that the PPP become a vehicle for the aspirations of the those posting on this thread. The PPP has a narrow focus on making good use of our status and knowledge from working with FDA staff and the therapeutics development processes for 6 or 7 years. I was the first PD advocate to explain the importance of FDA and Industry to our quest for new therapies, and was allowed to operate independently without interference from turf conscious PD organizations. Others recognized the value and joined in to make us what we are today (with all the +'s and -'s). I think that objectively we have accomplished a lot to make the PWP voice heard.

I think the PPP is too identified with me personally, as the primary proponent of the group for so many years. Most others have alternate identifications. I have been trying to change this so the value is retained for what its worth, as I become less able.

What I can offer to PD advocacy is experience with the challenges of establishing a voice for patients that has only patient interests to answer to. I must say that I shutter at the thought of trying to start a grass roots organization with no budget to reimburse people for necessary travel, and relying on voluntary efforts for technical skills to develop data base software which meant for us starting over three times because the volunteer could no longer contribute before the job was done. PPP is therefore trying to maintain close affiliation with PDF and still retain independence.

In sum, I have had the goal of greater empowerment of PWP in a more unified PD community for a long time. This is not power for its own sake but power necessary to reach the cures.

Perry