because - from what i hear - the symptomatic benefit from GDNF was so dramatic for so many, i tend to forget that it is thought to be neuroprotective/restorative - i would *certainly* include it on a list of non-levodopa-centric therapies to explore - anything that relieves symptoms without causing debilitating side effects that need 2 or 3 other drugs to control is ok in my book - neuroprotective or not!

as far as PWP being lab animals, you aren't kidding. I know there is at least one organization out there trying to change this, but at this point, the whole research enterprise - from researchers to institutions to industry to funders - has the latitude to be as impermeable as it wants to be. researcher doesn't like a question you ask about their study (like, "um, so, you kinda claimed you identified a causal relationship without providing any incidence rates - what's up with that?") researcher can just ignore you. researcher only wants to talk to members of the club? you never hear from researcher again when you reveal you are just a person with the disease they study. Journal, institution, funder, pharma company - *none* of them is under any obligation to listen to anything anyone outside of the club has to say.

it is hugely frustrating, and i haven't been wrestling with anything nearly as perplexing, opaque, frustrating and complex as Amgen/GDNF.

so yes, i agree 100%.

boann