hi vicky,
your post is very interesting and i agree with many of your points. the people in the trial you are in sound like they are accommodating of the patient capabilities to participate; what is the trial and where can we find it?

i also agree that genetics is new and understand a long way off Advanced patients don't call for a cure for themselves very often; that was promoted through the pd community by the medical scientific community 's "cure in five years" statement - 11 years ago.

I don't think patients should be blamed for bad research or that we are throwing out the baby with the bath water. Informed patients are very few in number. Most pwp are uninformed and listening to their doctors.

This is a corrupt business. Corrupt in both sense of the word - clinically corrupted and corrupted through conflicts of interest. [IMHO]

paula