[paula_w]

..this summer has been extreme; climate is scorching. i actually dreamed about water shortage - yes i 'm an exciting friend.

are you up for listing every treatmnent that we can think of here? the ones that have failed must be included or there would be no list.

obviously the system, in spite of many good attempts. is flawed.now people in chili are studying the placebo factor. how about the trial. we can get this info from databases...pipeline, pdtrials, but it could spur someone into action over it:

gdnf - it's been over two years since it made it's so called comeback. we need a town hall type meeting.

ceregene-what gives..just how well does it work?

same with neurologix and prosavin.

is anybody significantly improved.

is there truth to the rumor that the fda has asked for more preclinical data on gdnf? could this be a delay tactic until amgen sees how the other ones do?

where deos prosavin fall on the continum?

duopdopa = straight l-dopa...but at what cost. these treatments are out of our leaguewhile we receive minimal charity from the pd orgs. so the heads of the orgs are not performance based? there is too much money ending up in thewrong hands ,

Donations should not be paying orgs. but should represent pwp. so skewed.

then there is ; alpha synucelin;lysosomal sacs; grehlin, allosteric modulators, new drug for dyskneskia, calcium channnel blockers
we could have a prion disease'

oh yes forgot dbs.

what else isn't working?

[Jaye]

While fumbling around the MJFF (Michael J. Fox Foundation, for our newer readers) website one day, I noticed that they were still (at least partially) funding Ceregene trials, or rather CERE-120 Phase II trials. They had trials on it a couple of years ago which didn't show any advantage of the bio-drug over placebo, which means they had half sham surgeries (the placebo) so no one should be able to guess what group they were in. I'm not sure how long the trial was blinded (i.e., who got which was a secret), but somehow it wasn't long enough. They concluded this after two patients died of other, unrelated causes, and they got to autopsy them. Their brains did show new cells just exactly as hoped, but in a different different way than expected, so they studied the real brains and learned a lot from the trials anyway.

So now they're trying this bio-drug in another Phase II trial at higher doses and injecting it into more places in the brain. Yes, they are still using sham surgery, but there is such a tremendous placebo effect in PD that they have to control for it, so that any benefit from the drug can be proven. The new trial will be blinded (the secret of who got it will be kept) for something like two-three years, depending on when any individual joined the study. Advocates have been asking for longer trials of hopeful substances. The animal studies were very hopeful, and with the autopsies for encouragement, Ceregene decided to get funding and try again.

Trouble is, the stuff they are squirting into the brain through a hole or two works by reviving old cells (I think), so people with far advanced PD would find it of no benefit. I hope they try it on a few advanced people anyway, in later trials.

I'm just back home from San Francisco, where I "passed" the screening and had my baseline tests, so they can tell if there's any change after the surgery, which I will have early next month. I have been told it's "highly experimental," involving gene therapy, and I shouldn't compare notes with anyone because too much back-room conjecturing can really mess up the results. But I am allowed to gossip about the medical staff, LOL. They are all very nice.

Paula, I'm sorry I've been so out of touch. All this has been kind of overwhelming.

Hope this helps with your questions. there's a lot more detail on the Ceregene site and in some research papers cited there.

Jaye

GO HARD SCIENCE (are you out there, Howie?)