I just got an idea but of course no one has to really do it . if we could draw a timeline for our lives...what would be the markers to achieve and when in your own personal life.

CURE TIMELINE: personalized for me - closest is presently GDNF pump infused. It has no adverse effects or events, and it could start at phase II or III.

Gene therapy gaining ground - but many unknowns,just about everything about gene therapy is just now being observed for the first time. Carolyn probably posted this somewhere but says today that Ceregene will have all 51 surgeries completed by mid September I think. We'll have to compare that date with the risk assessment meeting in September. Hopefully, ceregene will slide into home first.

The Cell - our basic little unit - there are so many and we think we can discover a way.

I wish the next generation the best with these fascinating studies. I want pump infused - phase III - GDNF - restarted and Amgen could stand to redeem itself from some shady PR as of late. They won't give it to people for research.

Risks are far fewer than gene therapy. It's even probably less risk than DBS. These researchers are being denied a chance to prove this - and they could make good money - something Amgen lost perspective about.

We have some new information - will share soon. If you aren't interested, please don't write negative responses that say 'give it up". I don't 'give it up because there are too many researchers still working on it. In the case of GDNF, we have clear allies. It's a treatment that should be happening.

XX
paula

...on gene therapy, Neurturin (NTN) is that is going to be the answer we all sought from GDNF.

Yes, this could be the placebo effect , but I have received comments from personal observers in my life that my gait is significantly improved and I can feel it, my tremor, while not gone...darn it all...is somewhat improved (will see what the blinded rater says in mid-Sept at my 3-month eval ), my finger-to-thumb-tap is significantly improved, my hand open/close is significantly improved. How is this a only only eight-weeks post op!! If I remember correctly, Phase I patients saw 38% improvement at the fourth week...could be wrong, of course.

So, for those who are tracking gene therapy...watch for the beginning of Phase III in 2009. The Phase II data won't begin collection and analysis until late 2008...one year after the last Phase II surgery is completed.

Keep the light on , giving up hope now equates to giving up hope for those that follow behind us "oldtimers" (18 years here.) The may have sunk, but as Norman Vincent Peale said, "Lots of people limit their possibilities by giving up easily. Never tell yourself this is too much for me. It's no use. I can't go on. If you do you're licked, and by your own thinking too. Keep believing and keep on keeping on."

I love your spirit Carolyn. Thank you for all you do here. I hope you keep getting better and better.
Maureen

Carolyn I hope, too, that you keep getting better. It's good news for us all and the fact that they are moving quickly scores even more points for a company trying to run a trial as quickly and successfully as possible.

Carolyn

thanks for the timeline - so 2009 is the time to look for the phase III Cere trial - that's good to know. And thank you for your health update - most encouraging and exciting to hear. Yes perhaps NTN is the answer that we all sought from GDNF.

Here's the point for some of us....2009 is two years away. That's for phase III. Much more work to do after that. By the time NTN is on the market, some of us will die. Yesterday we grieved for a 32 year old.

This isn't about how positive one can sound and shooting thank you darts. It's about life and death and the injustice of it all.

GDNF could have been on the market and sometimes staying positive is asking a bit too much. Today could be one of those days for me.

It goes without saying that I have the highest hopes for a successful outcome of the ceregene trial. I also have faith in miracles....and don't like the words 'give up'.

paula