Hello all! Paula, Peg, and Paula's daughter were all beatutiful. My husband Ed and I were also at the Conference. We overlapped one day and were there ourselves one day. Although not as experienced as Paula and Peg, I think we did a good job getting the word out. I live in the Chicago area and was a Graduate of the Clinical Research Learning Institute. PDF picked up the tap for the hotel for the 1 night and we chose to take care of the train,bus,etc. Not only did we hand out information, discuss patient advocacy, clinical trials,
what's new in Research, ....,but also explained the way trials are done in the US. One lady from another country asked why on earth would I be in a clinical trial? I think she thought I had mental problems until I explained that trials in the US are looking for a cure, neuroprotectine, and to improve our quality of life. In her country, they do clinical trials primarily with terminal patients. So many people had relatives with PD and were thrilled to see people with PD actually participating as advocates in such a public setting. They didn't say that exactly, but mentioned their relatives stay home alot and do very little. It was a great experience and I would definately love to participate again.
Quote:
Originally Posted by pegleg
GregD
That is an EXCELLENT question. Most of our travels are funded because we are advocates under the umbrella of PDF (Parkinson's Disease Foundation). If we don't exhibit materials for PDTrials.org, then we are presenting, serving on a panel, etc.
As part of the Pipeline Project (which is a grassroots effort), PDF has supported patient advocacy for years. They ask u each year which meetings we would like to have t requesy various sconferences and meetings. mosy pothe orgs do th e same, but a little accolade here for PDF - they get it - they really do. Thank you, PDF!
Peggy
OOPS! Paula beat me o posting a eply to Greg D. sorry
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