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Bob Dawson

I don't know Valerie and Diane, but Kate is one of the lighthouse beacons that prevent me from crashing my boat on the rocks, so her enthusiasm in introducing us to Valerie and Diane tells me that we were very well represented at that conference. This is really new, folks. Thirty-eight people with Parkinson's invited to something about Parkinson's: this did not used to happen. It is good.
I will, of course, provide my own interpretation about why some PWP are avoiding clinical trials. The Parkinson's industry is committing a major strategic error in refusing to look that question straight in the face. I, myself, have volunteered for a three-year PD experiment, with neurologists that I trust. At this point in the history of Parkinson's disease, it is difficult for some of us to trust, because we have seen at close range the extent to which the Parkinson's industry is riddled with deception and contempt towards the "end-users"; the extent to which competence and honesty are considered to be unnecessary frills. But this one Parkinson's association has done something that makes me take off my hat, bow down, and thank them. They invited Kate Kelsall to their meeting. And many other people with Parkinson's. And as a Parkinson's person, I am proud to be represented by Kate Kelsall, and those like her. Thank you, whoever you are out there, who opened that door and invited these people in. I have seen this kind of thing many times before. Someone opens a door, where nobody even knew there was a door, and they make the deliberate decision to let those outsiders step through the door, and the most wonderful thing is: once opened, that door can never again be closed.
Thank you all, Kate and I have no idea how many others, who were involved in opening that door. You know who you are. Have a glass of red wine. I lift my glass to salute you.
Rock on.

Kate Kelsall

Hi Bob,

Thanks for your kind words of support and your thoughtful response. The Parkinson’s Disease Foundation sponsored the 38 participants with PD who attended the Clinical Research Learning Institute. I was honored to be chosen out of the highly qualified group of applicants. It was a life-changing experience that already seems to be opening new doors for the PD community.

I am assuming that you are referring to the Amgen study in your comments. The following book was recommended by classmates at the Institute:

Monkeys in the Middle: How One Drug Company Kept a Parkinsons Disease Breakthrough Out of Reach
By Nick Nelson

Book Description from Amazon.com:

Some said it was a miracle drug; others called it the cure. A drug known simply as "GDNF" seemed to do the impossible by actually reversing the effects of Parkinson's disease. The miracle ended in the fall of 2004 when Amgen Inc. abruptly halted clinical trials of GDNF and denied access to the drug. In "Monkeys in the Middle," investigative reporter Nick Nelson recounts the true story of the brave patients who took on the world's biggest biotechnology company for the right to be kept alive.

Bob Dawson

Wow! Classmates recommended Nick's book! I keep 10 copies of it on hand to give out. The reaction from officials up here is to silence it (a Canadian group of patients were involved and have largely been kept silent and hidden, or bullied or paid off) and so I am an enemy of modern medicine or something, so it is encouraging that the Amgen fiasco was even mentioned at all. Nick's book pretty much shows how a clinical trial should NOT be done. Rule of thumb: do the opposite and it should work out fine.

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