It behooves anyone who takes the forum seriously to read this book. You can't fully understand the potential here unless you know what has been accomplished by the people in this thread. We have the potential to create quite a leadership, which translates into quite a following.

I know it's hard to focus and hold the book etc etc but this one is a must. It's not one person's story...it's the whole thing - you just have to read it...i so hope you do. We had so much of what he needed because we were living it as he wrote it. This is an accurate book and we all made incredible discoveries and inroads - Tom living a parallel life in the UK, where GDNF was the most successful. Then there's the Univ of K - in the US.. Tom has gone on the radio, written books, walked for ages, video taped the patients, and we all came together at the World PD congress in nyc. Nick Nelson, author, came to PDpipeline project table, saw Tom's video on my laptop - before and after GDNF - Bristol patients with Gill. And decided to write this book instead of taking a job with a Texas TV station.

You will not regret reading this book. It could be a textbook - required reading for a class
no agenda here - my agenda is your agenda

adding this facto that may not be known by some or forgotten by others.

Did you know:

that Jaye was the person to discover the infamous video of Amgen's Roger Perlmutter online saying they wouldn't make money on GDNF but they would go ahead with it anyway ....and Perry Cohen delivered the video to 60 minutes?

Also want to make clear: people aren't named - referred to as a reliable source, etc. Some are named, but it is a serious attempt to be impartial. Hard to do when only one side would talk to him.

paula

This is the first time in a long time that i'm posting here. Can't lurk anymore with so much going on. I wanted to second Paula's encouragement to read the book "Monkeys in the Middle." The GDNF saga is a textbook case of how NOT to conduct clinical research. Read the book, and you will better understand why a cure for PD still eludes us. There are reviews and access to excerpts from the book on Amazon. PWP need to understand the problems with the drug development system, to help prevent loosing more promising treatments in the future. I admit i have been obsessed with GDNF for the last 4 years and dopamine agonists had nothing to do with it. A generation on PWP were denied one of the most promising PD treatments in years. BTW it was predicted that if the GDNF trials had been continued, it could have been available for clinical use by 2007.

If there had been a worldwide advocate's database, as Tom suggested, when a handful of patients and trial participants began challenging Amgen to release GDNF, maybe we would have had enough strength to free GDNF from Amgen's grip. Maybe more of the researchers would have felt empowered to challenge the company's actions. Maybe more of the orgs would have been willing to join with patients and stand up to Amgen, rather than remaining silent.
It's an idea that I think should be given a chance.
Linda

my encouragement to read this book. I m going to start promoting it to the support groups and have the Provincial Society add it to their lending library. It should be made available to everyone, and the cost of the book should not be a barrier.

Joy

History of the GDNF trial halt: http://www.pdpipeline.org/advocacy/gdnf_table.htm

I suggest taking it to the same court, that ruled for PD Mirapex victim...
8.2 million dollars...

take your case to the same lawfirm...as well

Thanks for the kudo, Paula. I didn't think anyone remembered that. Now I see why you wanted me to read this thread.

Nick sort of grouped us independent observers as "Kentucky patients," but that's okay, we didn't go for fame (or because anyone paid for anything) but to stand/sit behind the GDNF patients. I was literally behind one of them, whose wheel chair was situated in the gallery in New York. He shook harder with every verbal shock, almost rising out of his chair at one point. I will never forget how helpless I felt. I'm so glad Nick has recorded the whole story.

Jaye

Attached Images

best Celia.jpg (27.5 KB, 172 views)

Dr.Greg Gerhardt is giving a great lecture on the GDNF serum - in 2000 - in DC pictured here,
Joan Samuelson and Michael J. Fox are in the audience
and me, I was holding the camera.(still)?
I went to the White House with Greg as we were the guest of
Congressman Lane Evans & we met and spoke to President Clinton -

and dear Greg also invited me speak at the University of Kentucky on Young Onset PD...
Morris K. Udall Centers of Excellence:

http://www.ninds.nih.gov/funding/res...s/kentucky.htm

I remember this vividly. I also recall you telling me that there was a characteristic about the monkeys used in the GDNF trials that was unique - their tummies were pink! But I can't remember for the life of me why that was a good thing. Do you remember that and do you have an explanation?

Peggy

link
http://www.blackpineanimalpark.com/A...us_macaque.htm

this is a young female rhesus monkey her reproductive area is healthy & pink!
the female rhesus monkeys used in the labs, were older - could not bare anymore young, it was told to me by a very reliable source -scientist.

The monkeys that were used in the GDNF clinical study had an amazing thing happen -according to the scientist quote: the female reproductive area of old rhesus monkeys - reproductive area "turned pink" - indicating that the GDNF did give the hormones that cause reproduction -back to the senior citizen aged - female moneys...
without the GDNF Serum only young female monkeys were pink -indicating the health of the reproductive system...

wiley interscience link
http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0
Article
Intraputamenal infusion of GDNF in aged rhesus monkeys: Distribution and dopaminergic effects
Yi Ai 1, William Markesbery 2, Zhiming Zhang 1, Richard Grondin 1, Dennis Elseberry 3, Greg A. Gerhardt 1, Don M. Gash 1 *
1Department of Anatomy and Neurobiology and Morris K. Udall Parkinson's Disease Research Center of Excellence, University of Kentucky Medical Center, Lexington, Kentucky 40536-0298
2Sanders Brown Center on Aging and Department of Pathology, University of Kentucky Medical Center, Lexington, Kentucky 40536-0298
3Medtronic, Inc., Medtronic Neurological Division, Minneapolis, Minnesota 55421

email: Don M. Gash (dongash@uky.)

*Correspondence to Don M. Gash, Department of Anatomy and Neurobiology, University of Kentucky Medical Center, 317 Davis Mills Building (MRISC), Lexington, KY 40536-0098

Funded by:
Fond de la Recherche en Santé du Québec
U.S. Public Health Service; Grant Number: NS39787, AG13494, AG06434, MH01245

Keywords
trophic factors • basal ganglia • substantia nigra • dopamine neurons


Abstract
Site-specific delivery of trophic factors in the brain may be important for achieving therapeutic efficacy without unwanted side effects. This study evaluated the site-specific infusion of glial cell line-derived neurotrophic factor (GDNF) into the right putamen of aged rhesus monkeys. After 4 weeks of continuous infusion at a rate of 22.5 g/day, GDNF had diffused up to 11 mm from the catheter openings in the putamen into the rostral putamen, internal capsule, external capsule, caudate nucleus, and globus pallidus. Anisotropic flow along the external capsule tracts carried GDNF into the anterior amygdaloid area. Backflow of GDNF along the catheter track from the frontal cortex infiltrated juxtaposed corpus callosal and cortical tissue. GDNF was carried by retrograde transport to dopamine neurons in the ipsilateral substantia nigra, stimulating an 18% increase in the number of tyrosine hydroxylase (TH)-positive dopamine neurons and a 28% increase in dopamine neuron perikaryal size. Also, TH-positive fiber density was increased in the ipsilateral globus pallidus, caudate nucleus, and putamen. Anatomic effects from GDNF stimulation of the dopaminergic system were restricted to the ipsilateral hemisphere. Retrograde GDNF labeling was also present in a few TH-positive neurons in the locus coeruleus and a large cluster of TH-negative neurons in the ventral anterior thalamus. Anterograde transport of GDNF was evident in axons in the pyramidal tract from the cerebral peduncle to the caudal spinal cord. Tissue injury from the intraparenchymal catheter and continuous infusion was confined primarily to a narrow zone surrounding the track and was mild to moderate in severity. J. Comp. Neurol. 461:250-261, 2003. © 2003 Wiley-Liss, Inc.
Received: 21 August 2002; Revised: 20 January 2003; Accepted: 6 February 2003

another research link -
http://jpet.aspetjournals.org/cgi/co...ull/282/3/1396
http://www.pubmedcentral.nih.gov/art...28910#id282096
_____________

Please - go watch the films at "The Monkey's in the Middle" website -

we need a petition to take the lower courts decsion -to the Supreme Court!
OR~
as a humanitarian gesture Amgen give the serum
completely over to the Morris K. Udall's Centers of Excellence...
free and clear, and allow them to prove the Amgen monkey studies false.