[paula_w]

General chat as before - a chat room will be created shortly before it begins.

Meeting: 4:00 ET p.m.

Tuesday: Nov. 25

That's tomorrow.

This meeting is important because it has possibilities for us to become public as an entity....so we have to define who we are. Hopefully, we all know where we are, most of the time anyway. Oh to be kidding! lol

It's urgent ...needs immediate attention. open to all - bring your ideas.

mahalo,
paula

[paula_w]

....and I forgot. Just got home. My apologies.

if anyone was going to attend and would like to reschedule, please let me know.

paula

[lindylanka]

a re-schedule would be good!

[girija]

I am interested, please re-schedule it. thanks
Girija

[reverett123]

...hello to girija. Glad to see you back.

[paula_w]

Cere 120 failed to meet endpoints. I didn't see that one coming altho it is not much of a surprise - researchers are saying publicly that it wasn't as good. I wonder if they truly believed it could be as good as GDNF. I was under the impression from the first mention of neurturin that it didn't work as well as GDNF. On the other hand, they had no choice, thanks to Amgen and made a historical attempt to be quick about it.

Neil asked, "what's next if the other gene therapies don't work?"

Well there's this and that:

http://michaeljfox.org/newsEvents_pa...cle.cfm?ID=419

http://michaeljfox.org/newsEvents_pa...cle.cfm?ID=418

Always hope for symptom improvement. But even Mike says not working to cure himself and the foundation makes no decision based on his circumstance. Look for People mag. next week.

I would like to feel better, have had no delusions about a cure since GDNF .

So now we are helping our children and grandchildren. I would still like to keep kickin as a "patient researcher" - it gives me something to neglect doing. Like there is a purpose behind my utterly pathetic energy bank that will someday emerge as a great discovery.

.....i'm in a changing environment that is a bit like a carnival mixed with solid spirituality. It's getting better, and I am ready to roll up one sleeve at this now. Can we meet next Tuesday at 4:00 PM ET? I'll do my best to remember and will start the chat room shortly before 4.

We heed expert advice on what kind of data is needed.
We need pre-existing resources.

I'm working on some collaborative ideas to help get us the boost we need to start.

so next Tuesday at 4:00 pm. ET in the pd chat room.. I'll create one shortly before 4 and try to remember this time. Open to all who are interested.

Thank you and Have a Happy Thanksgiving!
paula

adding: even my personality is med regulated. As I 'm writing this, I'm quite positive we can add to the valid mining of patient research. In the morning, citing my almost total incapacitation as demonstrated by the bizarre gyrations and effort necessary to make it to the bathroom, I berate myself for committing to another project when i have no energy for my own life. It takes a half day sometimes to wake up....then i'm out of depression and ready to write a database.

[lindylanka]

Totally relate to this - add insane sleep pattern to the pictre too........but would still like to help make a difference, actually there is nothing else that I would like to do more, always of course dependant upon the huge elephant in my room with pd written on it's forehead that most people dont seem to be able to see.............

Originally Posted by paula_w

adding: even my personality is med regulated. As I 'm writing this, I'm quite positive we can add to the valid mining of patient research. In the morning, citing my almost total incapacitation as demonstrated by the bizarre gyrations and effort necessary to make it to the bathroom, I berate myself for committing to another project when i have no energy for my own life. It takes a half day sometimes to wake up....then i'm out of depression and ready to write a database.

[girija]

Originally Posted by reverett123

...hello to girija. Glad to see you back.

thanks Rick, We came back from India a few weeks ago. You will see me more often from now on!
Girija

[boann]

not sure i can make 4pm... work til 6pm... but i can try. if not, will a transcript be available?

[paula_w]

Hi - having computer problems. I 'm entering - oh hell I'm now in- the stage of life where postural instability has become a major factor. Somedays I just don't get alert at all....had to whine first.

On the other hand, I will make a copy of the chat boann, and be happy to send it to anyone who would like one. I cannot focus enough to edit it however, so you'll have to learn to read chat speak. It's pushing our multi -tasking and bradykinesia to the limit..lol

I see soft snow almost forming into a snowball but not quite. We are all tired, but we have to do something and we've all got it. We are required in the process and have to think of things too.

paula