Todd - regarding the lack of patient voice at the PDF symposium; I can't comment on what happened on site because I was unable to attend at the last minute (although I do happen to know that at least one patient hosted a luncheon discussion table), but I do know about the inclusion of the patient voice in general at the PDF. On Saturday, the day after the symposium, the 2nd meeting of the PDF Patient Advisory Council (PPAC) was held. First convened just one year ago, PPAC consists of a dozen patients and a couple of caregivers who advise PDF throughout the year by phone on many adhoc issues and who also are working on an agenda of our own to identify unmet needs in the PD community in an attempt to direct at least a portion of PDF resources to projects deemed important by patients; issues relating to quality of life are huge on our list. I am on the council (I joined the meeting by phone as I was not in town); it was a competitive process that will be open again in another year for another round of selection.

Just so you know, I now live only on my Social Security Disability at the age of 49; had no medical insurance for 4 years after I lost my job until Medicare kicked in, lost my house and every bit of savings. I am only one voice, however. It takes lots; there really is no effective national forum for advocacy on social issues as PAN is reluctant to take up the flag (mostly due to staffing levels) and the other orgs defer to PAN as the single voice for all Parkinson's advocacy. I make my voice known there as well, serving on various committees. But again, it takes a critical mass; raising money and awareness for research and the cure is much easier for most orgs to tackle; dealing with how poor, depressed, chronically ill people deal with their daily lives does not sell well to donors; the cure is much more sexy!

As far as I know, only PDF involves patients in decision making in a formal way among all of the national orgs (besides PAN - they thrive on grassroots activism). PDF really is sticking its neck out in this regard - believe me, there is more than a little grumbling by researchers about the inclusion of patients even in the audience at these research events - that's how far we have yet to go.

Also, the PDF is only one organization - where are the others? I think you will find a greater patient voice present, and greater attention given to quality of life issues on the regional organization level. The Northwest Parkinson's Foundation, the Parkinson's Association of the Rockies in Denver, and associations in Texas, North Carolina, Arizona, Minnesota, etc. lead the way in this regard.

I commend your efforts to get the patient voice into the realm of health professionals training! Very important!

(p.s. my intent is not to challenge you, but rather to assure you that you are not alone - there are others speaking out as well!)