Posted by Therese Bujold on December 10, 1997 at 00:55:52:
In Reply to: Re: Kudos to JDF posted by Lawrence Ogilvie on December 05, 1997 at 19:28:07:
As much as I am very excited by a possible new era of thinking within the JDF ranks, my blood still boils when I think about the blatant disregard we all received by Eric Schutt and the JDF on August 19th, the forum at Melissa's. For the first time that night I felt like they might make an effort to start a straightforward interaction with a group of people who THEY REPRESENT. I do know that there were a few "give me just a little more time" messages left to Melissa from Eric, but that was nearly 4 months ago. I haven't forgotten.
For the first time since that night, I went back and reread that forum this evening. I would suggest that anyone who wants to be inspired do the same. http://virtualnurse.com/diabetes/clinton.html (scroll to the bottom and read up from there)
There were MANY good points and questions brought up, and people spoke with such passion. (Where are you all now??)
I know I keep beating this dead horse, but It should not BE dead. Some of the issues that were brought up are exactly the same issues that we are pondering now, such as financial investment by JDF in private research companies, the suspect "peer review" grant distribution process, ect.
I sense a crowd here who has been stifled by fear of being seen as a "basher." There is no need to bash. Asking simple questions and expecting honest, direct answers is something that no one should be ashamed to do.
Last weeks conference hopefully is a very important milestone for JDF and the quest for a cure. But I still see a guarded stance by the JDF to reveal numbers and statistics to the general public. Why? If they are proud of what they are doing, why would they simply not give the information that was requested, and come back to the forum for another round?
Guess I'll keep waiting.
Therese