[paula_w]

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

[LindaH]

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

[rosebud]

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

[Stitcher]

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

[lou_lou]

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

[Jaye]

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

[Stitcher]

New Website for this important book:

http://monkeysinthemiddle.com/

A "Miracle" Drug Kept Out of Reach

Including:
GDNF Videos Featuring Actual Patients featured in "Monkeys in the Middle"

Additionally, if you don't care to read the book, you can find the complete history of the GDNF halted trial can be found here: GDNF - glial cell line-derieved neurotrophic factor

[lou_lou]

Monkeys in the Middle by Nick Nelson, June 24, 2008
By M. Kaufman "GDNF 4 PD" (Algonquin, IL) - See all my reviews


My name is Maggie Kaufman. My husband is one of the Phase II trial participants in Nick Nelsons book, "Monkeys in the Middle." Nick spent a week in our home doing interviews with us as well as visiting with Martha Bohn with my husband Steve. This was quite an intense past couple of years for Steve and I. We developed a network of Parkinsons patients and found GDNF supporters all across the country and the world. We know or have talked to most of the patients in both the Phase I and Phase II trial and consider all of them our very close friends. Nick has captured each and every patients story with precision. This book is well written and very factual. Nick wrote this book responsibly taking no sides. As you read the stories of each patient and the stories of the investigators, I believe the truth comes out. The fact is, GDNF works. Just before they removed the drug from Steve's pumps, I actually forgot he was sick. He always forgot to take his regular PD medications and would do just fine. Prior to GDNF he would sit on the couch and shake very rigidly all night long barely getting any sleep at night. 9 months after having GDNF in his system he was walking on the beams while building our deck without any assistance whatsoever. If this isn't a testimonial I don't know what is. A Parkinsons patient cannot fake balancing on a beam! This proves there was no placebo affect.
When reading about the antibodies or the lesions on the Monkeys brains you need to pay special attention to the opinions of the trial investigators in this book. I am not a scientific person but I believe
with the evidence of migrating catheters (catheters becoming dislodged from the pumps sending the drug into the patients abodomen rather than the brain) causing antibodies (good or bad, no one knows) and the fact that immediate withdrawal of the drug caused lesions (just as when a doctor puts you on steriods and you start with a higher dosage down to the lowest level to be "weaned" off the drug), abrupt withdrawal of GDNF caused lesions in Monkeys brains at very high dosage levels. It just amazes us that Amgen turned a blind eye to this. But the reality of it was stated very clearly by Roger Perlmutter at Amgen. It was simply put that Amgen could not make any money on this drug. The cost of the surgery is too great and the hospitals do not have enough surgeons to do these surgeries. They'd rather do back surgeries turning patients more quickly thus making more money. In essence, it would be a hard sell to the hospitals to take on such a costly time consuming surgery. This is a sad state our country is in. Greed takes over in the end. We haven't stopped fighting, we never will. We now can only hope that Amgen wakes up and finally puts the patient first rather than lining their own pocketbooks.

I personally would like everyone to know that you can make a difference in this world. It only took a few emails and a few more phone calls to get the attention of the world. If you find something you strongly believe in, it may seem like a daunting task but you can make a difference. You just need to find the right ear to listen to you. It's really not that hard.

Nick does a very good job of showing how the patients and their caregivers have banded together to get the attention of the world. We will continue this fight and ask for your prayers of support to get GDNF back for our loved ones and I believe, to once and for all cure Parkinsons Disease.

Buy this book. It's worth reading to hear the true, heartbreaking stories of each patient. This is reality bookreading. This is our life. Help other customers find the most helpful reviews
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[Curious]

hi carolyn

what about posting this in the useful links sticky?

btw...i can't help but love the title. i'm going to half price books tomorrow and i'm going to look for it.

Originally Posted by Carolyn

New Website for this important book:

http://monkeysinthemiddle.com/

A "Miracle" Drug Kept Out of Reach

Including:
GDNF Videos Featuring Actual Patients featured in "Monkeys in the Middle"

Additionally, if you don't care to read the book, you can find the complete history of the GDNF halted trial can be found here: GDNF - glial cell line-derieved neurotrophic factor

[lou_lou]

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