Rick this is an easy one...he is looking at pictures; we looked and talked to patients. End of response.

go tell him - i haven't joined...lol
paula

sorry i am into sinemet hyper hour - didn't mean to be rude - would you please tell the potential schiller the response as i am not a member of plm.

many thanks,
paula

Paula,
As you recommended, I have ordered Nick's book. I wonder where he is - the e-mail link on his site does not work any more. The other thing I did yesterday was posting Chapter 22, and I included a lot of weblinks supplied by people on this site. I don't need all the details to know where I stand on this but Amgen or their servants use details to confuse, so I thought a few readers of my site would want to arm themselves with information to argue back; which is very easy, if they have the links of all the huge, gigantic amount of information that some of you have posted. And I had to go watch the videos of Andy Grove again, and read his words - I love that man. Can we get him to come to our rescue some more?
With Chapters 21 and 22, all I am doing is adding a search-engine findable site for the future; in addition to everybody else's sites, to make sure that the Parkinson's volunteers are not forgotten. Most PWP do not know about this, and almost no one in the "general population" knows about it. I know that some of you worked hard to get the word out at the time it was happening, and the world just let it go by. But with the Baby Boomers retiring, the number of PWP in the USA is expected to increase from one and a half million to eight million people. I want about seven million of them to know about this. In other words, I expect there will be more people angry about this in the future, than now, or than when it happened. The audience, sadly, is growing; but there will be a tipping point, a critical mass, where they will be ready to turn and fight, and the experience of Amgen will instruct them to be prepared and hit hard. In that sense, the 48 volunteers are the first soldiers landing on D-day, gunned down by the enemy, but winning a landing point where a massive army is going to come ashore.
The only dilemma is how to find enough outlets or e-mail addresses to spread it around. In the past year, I contacted all of the PD associations in the USA, Canada, and most of Europe, and I got one reply. How to get through to actual people, rather than answering machines?
If anyone has lists I can e-mail to, I promise I will only e-mail them once. Or if it is your list of contacts, you e-mail them. "You" being anybody who is interested.
But, in any case, this story has legs. It is a huge story and it involves everything imaginable. Even if I never mention it again after the end of this sentence, I know that the story is picking up momentum and is spreading. The volunteers, who offered up their living bodies for the benefit of all mankind, and who were brutally betrayed, will not be forgotten.
chapter 22:
http://parkinsonsdance.blogspot.com/...hapter-22.html
chapter 21:
http://parkinsonsdance.blogspot.com/...r-21_3946.html

Peace and love. It's not just hippie talk. At the same time:
Give war a chance. We need a full-scale war against Parkinson's, not more studies about how much chocolate we eat or how much gambling we do.

calmed down now
will not forget

Nah, Bob, don't calm down. If nothing else, go to my blog and copy the Amgen sticky to your blog. It could start a landslide

I was one of the 48 in the GDNF phase II trial and I just want to say thank you. My Doctor tried to tell me that it didn't work. I know that it did. I also know that I will probably never again get the opportunity to get better like that, and it makes me really angry. There were so many things about the trial that distroyed trust. One thing that I would really like to see a push for, and that is, that if/when foreign things are put in the body such as tubes (GDNF) wires (dbs) etc. - that they should be monitored regularly and that if the Doctors/powers that be/writers of consent form put something in writing that the patient signs - that they should be held to their promises!!! not just the patient. I understand the need for flexibility with newly gained knowledge, but the patient is not a monkey or a rat but a human with a brain!!

jingle/april - with scars

jingle belle I bow down to you. Have any scientists followed up on the 48 to see how they are doing? Probably not. I don't know if anyone even has the names and current addresses of all 48; that is, of those who are still alive. We should at least have the exact names of all 48, so we can require that whichever pharma buys the rights from the evil hands of Amgen, must chisel the names of all 48 volunteers into the exterior walls of their world head office, as a small recognition about what was done. I am also serious about the litmus test - any doctor or nurse or scientist who believes that what was done to the Amgen 48 was acceptable, should not be allowed anywhere near Parkinson's people or Parkinson's research. Some of these people are clearly in the wrong line of work, ethically challenged, and dishonest. The damage inflicted on the 48 has spread like a stain, to widespread distrust and even fear. Is is whispered about in PD clinics. WE ARE NOT THE ONES WHO HAVE TO WHISPER.

another gdnf carepartner is a friend of mine on facebook. i contacted her about our book and knew he had passed away but didn't know details. he was on placebo, had the first two treatments [they did begin giving the placebos the real thing after six months.] he received two doses and it was cancelled. so brain surgery, 6 months placebo, 2 doses, and they cut it off. He drowned at age 57.

I remember some of the caregivers saying the mask face went away right away.

paula

I have gotten much response - from my web stream @ flickr
t has been viewed over 350 times, this week -
as long as I am alive - I will continue to be a patient advocate for
PD
here is the link to my advocacy:
http://www.flickr.com/photos/soloflight/3918099006/

An avalanche would be good. There is nothing to stop this from happening again and again, as long as the perps think they can get away with it and everyone will forget. Elephant memory. Will not forget. Will always look for opportunities to bring it back out in front of people.

Prof. Sander van Deventer,
Chief Science Officer and Co-founder
Chief Executive Officer
Amsterdam Molecular Therapeutics
Meibergdreef 61
1105 BA Amsterdam Zuidoost, Netherlands

Dear Sir,

You bought GDNF from Amgen! (later correction: Amgen still owns it; AMT bought a licence) We hope that you succeed with it. Through no fault of your own, your acquisition has skeletons in the closet. And I do mean skeletons. You should recognize the contribution made by the PD volunteers who were used to test the drug, and you should note the substantial evidence that many of them benefited from the drug before Amgen threw them overboard. You should contact the volunteers directly and learn about them, as Amgen is most unlikely to have told you the truth about anything.
There is real hope that GDNF, with a proper delivery system, may help millions of suffering people, and we are grateful if you even try. Be sure to honour and respect the people who sacrificed themselves to prove the benefits of the drug; the 48 volunteers who tested this drug, who were treated like cattle in a slaughterhouse by Amgen. Their names should be chiselled on your wall. Without their courage and generosity, you would not have the opportunity you have now.
And, you should embrace them publicly, if you have any hope of clearing the name “GDNF” from the stain of shame that Amgen poured over it. We know it is a good drug; but there is a great deal of distrust because of the misconduct of Amgen. You could start to heal the wounds by saluting the 48 volunteers who made it possible. And you will have to disassociate yourself dramatically from the perpetrators at Amgen, if you are to gain the confidence of Parkinson’s people. You will have to pass the Litmus Test, or else you will not succeed. The savagery that was inflicted on the volunteers must never be repeated, and if you want to work with Parkinson’s patients, you must understand that, or else find another line of work.
We look forward to supporting your efforts, rather than campaigning to shut you down. The choice is yours to make.

Signed
Bob Dawson

August 6, 2009
Prof. Sander van Deventer,
Chief Science Officer and Co-founder
Chief Executive Officer
Amsterdam Molecular Therapeutics
Meibergdreef 61
1105 BA Amsterdam Zuidoost, Netherlands

Dear Sir,

Hello? Hello? Is there anybody home? Has Amsterdam been evacuated? No one in your company will return my telephone calls, or answer letters or e-mails about GDNF. Even your Communications department does not want to communicate, which is very Orwellian. Are you starting a new clinical trial? Lots of volunteers lining up at your door? Did you tell them what happened to the last group of volunteers?

As it appears you do not want to hear from me, I introduce you to Volunteer Number 42 in the Amgen GDNF trials, years 2001 to 2004: TOM ISAAC:

"I think what hurts most is the total lack of communication by Amgen, who have put up a brick wall and won't discuss the issue.”

Ahem… Seems that Amsterdam Molecular Therapeutics has the same policy as Amgen… not a good start…

TOM ISAAC CONTINUES:

Sufferers who'd been trapped in a living hell were suddenly able to walk, talk and smile again. Men who had been unable to get up out of a chair unaided were walking normally across a room. Their hand co-ordination was unbelievable, in exercises they could move their hand easily from left to right, something that had previously been impossible under the onslaught of Parkinson's. The doctors didn't believe there was anything wrong with the drug and yet it was being taken away. They couldn't offer their patients an explanation because there was none to give. - Tom Isaac

And I introduce you to Volunteer Number 35 in the Amgen GDNF trials: STEPHEN WAITES

Stephen was 27 when he was told he had Parkinson's, and as his condition deteriorated, he had to give up his flourishing architecture business. He volunteered for the GDNF experiment. He says he was given back his life. 'I was able to restart my business. I had more than 40 projects on the go and I really had taken on a new lease of life. I could drive again and even bought myself a new Jaguar. GDNF made me independent, and after years of living with Parkinson's, I began to get my confidence back. It was a cure because it improved my condition more than 60 per cent - I could not ask for more than that and I was delighted. When I was told that the drug was being taken away I felt that they'd taken my life away along with it. I had committed myself to a huge workload and without the drug I couldn't fulfil my commitments. I've deteriorated since the GDNF was stopped - I can't drive any more so the Jaguar has had to go and we also had to downsize the house because I am unable to earn money. I was willing to sign anything to absolve Amgen of responsibility if anything went wrong, if only they'd let me keep taking GDNF, but they were having none of it. I am very low mentally now and I just can't seem to rise above it.' - Stephen Waites

That’s 2 of the 48 volunteers. Each one has a story. You should get testimony from all 48 of them, so you will comprehend the marketing problem you will face. Amgen said the drug was of no benefit, they said there was only a placebo effect; (eight days later they applied for a new patent for the format you are now working on); they lied and after that they told lies and after that they said things that were not true and then they confused us all with a series of falsehoods, after which they became deceptive, and then they committed a savagely cruel and brutal “project cancellation” that People With Parkinson’s have a habit of referring to as “None Dare Call it Manslaughter”.

You see, you have a marketing problem here, in terms of image and branding. How are you going to position your brand in the marketplace?

“NEW ADMINISTRATION! –THIS TIME YOU CAN TRUST US!”

Or how about: “GDNF – 48 volunteers agree – it’s so good, you would be willing to die for it.”

“The New, Improved GDNF – electric drills and abdominal pumps now optional!”

“9 out of 10 Parkinson’s researchers agree – it is unlikely you will be treated as badly as that last bunch of spastics who got butchered”

Dr. van Deventer, None of this was caused by your company. It’s just part of the baggage you purchased. But it is very, very heavy baggage. The stain of shame that Amgen poured over GDNF does not go away just by changing the name on the label and maintaining the same policies; such as, as Tom Isaac says Amgen put up a brick wall and won't discuss the issue.

If Amsterdam Molecular Therapeutics is following Amgen’s policy on this, is there any reason for us People With Parkinson’s to believe that you are not following Amgen’s policies all the way down the line? One thing that Parkinson’s does to us, curiously, is reduce or remove our sense of smell and taste. But it will be hard to swallow the new GDNF pills; we are afraid they are going to taste like blood.

The names of the 48 volunteers should be chiselled into the exterior walls of your head office. Then, maybe, just maybe, maybe we could start to trust you.

This one-way conversation, consisting of my questions and your deafening silence, is being published on the Internet. It may be forgotten by you and forgotten by Amgen, but it will be there in the computer memories of cyberspace, so that the children and grandchildren and great-grandchildren of the 48 volunteers will know that what was done was witnessed. The volunteers’ intentions were pure, their courage was awe-inspiring, and their generosity made us weep, when they offered up their living bodies in the hope that it might cure all of us, and then they were cut down by an enemy they never expected: the zoo-keepers.

But the old cohort is dying and being replaced by the newbies, who have never heard of the volunteers. So some senior People With Parkinson’s spread the word to the new cohort.

The volunteers have been forgotten by the Parkinson’s Research Cartel ™ and “the general population” never knew about this in the first place; but some People With Parkinson’s want to keep the story alive, because all the rules and regulations and methods and attitudes and greed and ethical standards that allowed it to happen are still in place; in fact those who approved it are riding high, victorious, masters of the universe. That’s why it is too early in history for us to say, about the 48 volunteers, that it is over now and it is “time to move on” and let by-gones be by-gones. Because it is not by-gone. It is not over. It is right there, right now, in front of you.

There is this guy in the United Kingdom who has PD and he does a lot of Monty Python type of humour on the internet, such as YouTube. I find him hilarious, although in North America we usually think the British are always in the middle of a Monty Python skit because of their accent, and their wit. He proposes we get some of the surviving volunteers to make joke commercials to put on YouTube.

“The all-new GDNF – now in cherry-flavoured bubble-gum format, with FREE COUPONS for COOL GADGETS.”

“Ask your doctor for GRANDMA’S ORIGINAL GDNF WITH NO SUGAR OR ARTIFICIAL COLORING.

“No more messy stomach pumps! No more holes in the head! Now, ask your pharmacist for GDNF in snortable powder format! No fuss, no bother, no blood-soaked bedsheets, no more leakage from the holes in the skull, no more battery failures in the implanted stomach pumps – there are 48 good reasons why you will LOVE the all-new GDNF. Stock up in case we decide to pull the plug again. A limited time offer.”

“48 martyrs were crucified for you. They died for your sinful disease, you fornicators and gamblers. Repent! Repent! Buy our new GDNF drug now or else lose all hope of redemption!”

Run it up the flagpole and see who salutes!

Signed,

Bob Dawson, President, Parkinson’s Underground Internet Conspiracy


September 28, 2009
Dear Mr. Dawson

Firstly, we apologize for the time it took us to respond to your e-mails.

We certainly appreciate your interest in our GDNF program. We know that patients have been treated with GDNF in the past and that these treatments have stopped. We believe it is worthwhile to investigate our GDNF gene therapy approach as a new and better treatment opportunity for Parkinson’s patients. In our program, AMT is developing a Parkinson’s treatment that is very different from any treatment tested in earlier studies. Previous treatments administered GDNF protein chronically, directly into the patient's brain. AMT's objective is to insert the GDNF gene into the patient's brain cells via a single injection, which should induce the patient's brain to make its own GDNF. This type of therapy is a brand new approach to medical treatment. It offers great promise, but it will take considerable time to test it conclusively.

We are pleased to inform you that our Parkinson's program is making progress. However, we wish to stress that we do not want to raise unwarranted hope with patients. We are not yet ready to begin clinical trials in humans. We cannot initiate clinical trials until the full preclinical development program has been successfully completed. AMT does not expect to start the clinical program until 2011.

AMT aspires to use its know-how and expertise in gene therapy to develop innovative treatments that significantly improve the lives of patients with serious, debilitating disorders and as a consequence adding substantial value to health care. In order to accomplish this, we work closely with patients. Their information on diseases and treatments is crucial for us, especially during the clinical trials. Our trials are done according to the highest professional standards and relevant national legislation.

The manner of our communications with various stakeholders is strictly regulated under Dutch law. In accordance with this legislation, we provide information on a regular basis primarily through our website http://www.amtbiopharma.com/ and press releases. All information will be published on our website. There is an option to subscribe to our press releases on our website too.

Again, we appreciate your interest in our GDNF program.

Kind regards,

Rob T.A. Janssen
AMT
(Investor relations and media contact)