found this note online from a freelance journalist?
 

I have sent it to many of the VIPs...
peace,
tenalouise
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I'm doing research for a book about a drug called GDNF that was developed by Synergen in the early 1990s and was later bought by Amgen. The drug was used to treat Parkinson's Disease and had performed well in animal testing. Early human tests also showed promise.
In 2003, Amgen conducted a more scientific trial that involved 34 patients in the United States and Canada. Some of these patients reported remarkable improvements after several months on GDNF.

In Sept. 2004, Amgen halted the trial. Amgen officials said not only did they have safety concerns about the drug, but the drug was ineffective -- it had failed to meet the goals Amgen had set when the trial began.

Since then, a group of patients and doctors has fought in the courts, in the media and on Capitol Hill for access to the drug. They say they believe GDNF works and that Amgen should not have halted the trial.

If you have any information about Synergen, Amgen, GDNF or a related topic that could be helpful in writing this book, please send it my way. Also, please send contact info for anyone involved in the trials -- doctors or patients. Your anonymity is guaranteed.

You can reach me at:

GDNFbook@Gmail.com or (361) 774-9400

Thank you,

Nick Nelson
Freelance Journalist
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Hi Tena,

Nick Nelson has been working on the book since early 2005. We met him at PAN and the World Parkinson's Congress which was his introduction into the PD community. We keep in touch updating each other. He wants to write a fair, unbiased book. Any time we get a lead or find a trial participant, we give him a call and he interviews them.

I sometimes feel like my online activism is like stepping into the wardrobe in Lion, Witch and the Wardrobe. This book is being written as it happens. There is a good possibility of a screenplay and movie to follow the book.

paula

I've always liked this forum because
 

if there is anything going on out there, in the big wide world of PD, somebody on this forum will find it and bring it here so those of us who are too lazy or "Parkinsonized" (A new word!!!) or technically challanged to go find all this stuff out for ourselves can stay in the loop! Thank you Tena!!! You are always posting goodies for the rest of us to read and you deserve a star for this one! I for one, always appreciate the information that turns up, and I also believe the truth will rise to the surface, even if it takes a while..... Thanks for posting this.

Dear Paula & rosebud~
 

It is my desire for "us" to be well again - :)
thank you!