I always wonder why we get a blank stare, like why are you asking us to do this and I am surely not going to do this, from the audience when clinical trials are the presentation; support groups. I participate in an educational mode, rather than social, in another Parkinson's board. About two weeks ago I started a thread asking, clinical trials, yes or no. In the initial post I asked such questions as, "Have you ever participated in a clinical trial?" and "If not, why not." It was sad to see only three responses from a group that is many hundreds. I went back in and did a response of my own asking, "where is everyone, let's hear from all of you that have participated and for those who have not and why not." Zero responses other than the initial three. And we wonder why only an average of 1% of Parkinson's patients are involved.

I have done my part in five trials and the last meant that I can no longer participate in clinical trials.

I was at the NIH on a panel in May 2010. The focus was to present all sides of clinical trials, including a patients perspective (my job.) The audience was made up of invited CEOs and other heads of foundations and charities. Ronnie Todaro presented for PDtrials.org. At the end, because there were two presenters talking about PD one women in the audience didn't see this as a message to the audience to think, I wonder what our percentage of participation is, do we promote participation well, I should find that our when I return to the office. She complained about the presumed focus on PD only, what about other diseases. When the actual message was to go home and find this out, are we doing enough to promote clinical trials.

Of course, the point Ronnie was making by presenting pdtrials.org was to present a "template" of sorts that these org heads could take home and put into motion for themselves.

This was the first presentation of its kind and surely Story Landus will use that day the next time she puts such a presentation together again.

Of course, PD was not the only disease presenting!