I thank you all. I was diagnosed in 2004; have been dancing ever since, knew nothing much. I even registered here at one time and someone sent me a poem. But I went back to music and the forest. Deliberate ignorance, perhaps. Sometimes happier knowing little.
Now it's 2009 and I find out about this. Maybe because I live on a farm on a back road in Quebec, don't get to town all that much, and most of our media is in French and this never got translated. And I have always been very good at ignoring the big bad world out there. But I do know quite a few PWP, and most of them never heard of this either. Wow!
That sweet 70 year old woman in the waiting room did me a great service. She handed me photocopies of articles, and she told me about enough to make me angry. I think it is important that the experienced people hand the history on down to the newbies, as just happened to me. There are things that must not be forgotten. Their are memories that must be preserved, and taught to others. I consider the ones who survived Amgen to be real heroes.
Are the volunteers of that group still in touch, still being tracked in some way?
Well, I better go have a beer. This has been an intense day.
But I think this is powerful: in Quebec, and in how many other places, there are People With Parkinson's who lived thousands of miles away from the Amgen outrage, and years later it is the story at the center of what they know about PD. That 70 year woman came at me hard to make sure I knew the story, and she said the story continues to spread - and it must not be forgotten. She was teaching the story in the hospital waiting room - thousands of miles away and years after the event, about people she did not know; but she would judge people's true position or true beliefs based on how they respond to that controversy. As she said, there is no controversy - it was wrong.
Now I really need a drink.

Steve, why did you meet him, or how, or something? What were you doing there? He was filming in your town? He was great in some movies I saw.

whoever the 70 yr old who was teaching it deserves a big thanks from the pd community. we traced some canadians who paticipated but some changed from enthusiasm when we first contacted them to clamming up and saying they weren't even unblinded. it smelled - someone obviously got to them and convinced them to be quiet. poor people had to retract there enthusiasm from just one night prior. where one lady said gfdnf gave her the energy to leave her husband. the second night she said she wasn't sure she got it or some such story change.

if amgen would release the gdnf to a competent company who believes in it, they could start at phase III and an entire generation would have hope. why not restart the pump while gene therapy is being perfected? why do people have to suffer till a silverbullet is created. heartless and no idea what it feels like,,,,

but this thinking has been referred to as circular. i don't think so..what do non-circular thinkers think should be done?
we are pursuing the truth,,,,no matter what shape the thinking is.

paula

Yes, the sweet Grandma at the hospital who educated me about the Amgen scandal really conked me on the head with it. She was teaching a bunch of us in the waiting room, with photocopies of articles and telling the whole story in her own words.
I would like to spread the story even more; as I am free and independent I can say things that other people cannot so easily say because of their job; or in the case of a lot of PD associations, their need to appear neutral or reasonable or at least not burning with anger.
If I had e-mail addresses for the whole world, I would SPAM the whole world about GDNF, just one time. If anyone has any suggestions who I should send my article to, let me know. That sounds like personal vanity, but I consider it time to create a "teaching moment" and conk people on the head like the 70-year old woman conked me on the head with this story, and the litmus test: people's reactions to the story. If someone says that what was done to the 48 volunteers was all okay, count your fingers after you shake hands with them.

Yes..The Jason Isaacs..I have a buddy who works on the special effects crew, and was also Jason's chauffer..I got to meet Jason through him..He filmed 3 seasons of "the Showtime series "Brotherhood" here in Rhode Island where I live..I also have another friend who was an extra on the Brotherhood set

http://www.sho.com/site/brotherhood/home.do

Jason Isaacs with Mel Gibson in that movie... my wife informs me that's as good as it gets. You could get a lot of mileage out of that.. I mean, I sure would. You should practice up saying things he said, and what he was like... I'm not kidding. I knew a guy who was Marlon Brando's bodyguard for awhile, and everybody wanted to know, from someone who was there, what he is really like. It would not be fun to do that if the news was negative; but as Jason is a great guy and he hung out with you and your buddy, that's a happy story, and a great pleasure for his fans to know that Jason Isaacs is a cool dude in real life, and not just on the silver screen. People are hungry for good news about people, because there has been too much bad news. And they are not sure they can trust the press, but they will trust what you say, because it happened for real, and that comes through when you talk about it. You hung out with Jason Isaacs.

Yes, and as I mentioned, he is an interesting guy to chat with..and a gifted actor..I go to see by hanging out with him just how gifted he is..He of course has an British accent, and to play Micheal Caffee in Brotherhood, he had to adopt a Rhode Island accent, and he speaks it like a native on the show

http://www.sho.com/site/video/bright...lid=4610870001

In future reserch contracts why not make the contract btn the study participant and the pharmaceutical entity? Not the physician or institution and participant.

I'm still steaming.
Will try to cool down on the week-end

There are many details I still have to learn, so I have to read through the amazing archives you built up about the Amgen betrayal. I do not even have the book yet! (Monkeys in the Middle). I will get the book and read the archives, but even without that, without all the arguments and counter-arguments, it is immediately obvious that what was done to the Parkinson's volunteers was WRONG. Is anyone tracking the 48 volunteers, and what became of them and how they are doing? And the list of their names - does anyone have that? So that whoever starts producing the drug can chisel the names of all the volunteers on the outside wall of their head office, in recognition of the courage and generosity of those who put their lives on the line for all of us.
I have no power except what we all have - the power of truth and the knowledge of what is right and what is wrong. I do not know what will come of this, but one thing, and only one thing, I guarantee: the courage of the Parkinson's volunteers will not be forgotten. A whole new generation of PWP now being diagnosed are going to know the story and carry it in their memories to teach the ones who come after them. We have not forgotten; and anyone who tells you that what was done was acceptable, normal, and routine, has flunked the Litmus Test and should find another line of work; far away from People With Parkinson`s.