Originally Posted by girija;42[CENTER

[/CENTER]0340]yes, it is unfortunate that MJFF decided not to include patients. No scientist or investor who is talking in that forum would have the same emotion, dedication and urgency to find a cure/atleast a drug to slow down PD than a patient. Many scientists I know have research projects on diseases, they know all about them, symptoms, statistics, cost for treatment etc but never ever met a single patient suffering from the disease s/he is working on, I was like that before my diagnosis with PD. I am a researcher working on vaccines for HIV. In a conference (organizers invited patients to join in) one patient asked me a simple question after my talk. The question/comment was "yes, you have great data, wonderful vaccine and you have cured mice of AIDS. But what about me, when will i get the benefit of it? When can I get the vaccine?"
My immediate thoughts were well its going to take time, we still have to do this and that, we need more money and a little more time etc etc .................... At that time, mY focus was on the research project NOT ON THE PATIENT. I thought I understood the urgency and need for a vaccine, but I wasnt even close to it. Only the guy with AIDS knew how important and critical it is for him and with one question, he opened my eyes. Soon after that, I found out about my PD and then, only then I understood that question and what it meant. The urgency and the need for a cure NOW and the frustration that it takes too long to get a good candidate from bench to bedside and the fear that it might not happen at all.............only a patient understands and listening to him/her is entirely different from reading it in a book.
sorry......... too long a message....

Bottom line is patient input is valuable in many ways. While I agree with Rick that some of us with < "dual qualifications" could be there and bring back the info to this forum, some sort of patient participation is needed. If we are vocal about it, it will happen. lets try \

Girija