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June 5, 2006
Paula Wittekind, Editor, Grassroots Connection

"Putting a Name To It"

 

Several days ago, an article caught my eye about a man who passed away from Parkinson's, but had refused to give up the fight along the way. He was a retired CEO of his company, an optimist, well-loved, and never complained. His goal was to play golf again. People said that all you needed was his handshake; he was an honest man.

This article came through email in a Google alert for Parkinson's Disease Research. It  was mentioned that he participated in a clinical trial with Dr. Penn in Chicago and donations could be sent there. I knew that Dr. Penn was the Chicago investigator for the GDNF trial so I called the reporter to see if he knew anything else about the clinical trial this man was in. The reporter sent me the information that the patient's wife had sent to the newspaper,  which he had to modify drastically.

The changes were needed because of length and content.  Her article talked about the GDNF trial and sure enough - it was the halted Phase II  Amgen trial. I called the wife and talked to her at length.  Her husband was first in line for this trial; but he got the placebo. Brain surgery for a placebo....the chance you take. After six months, all were given the real GDNF. This man then got two doses, and the drug was halted.

He tried the only other option, a DBS, which failed miserably. On May 17, he died at the age of 62.

His name is Bob Cameron. And he is the first "what if" from this phase II trial halt. "For him, Parkinson's Disease was a terminal illness. The only alternative, DBS, did not work. We will never know whether GDNF could have eased his suffering or prolonged his life," said Dr. Donald Gash, research scientist at the University of Kentucky.

The FDA approved compassionate use, but the drug was not released. There has been no evidence of harm to humans from this drug. Question is,  just how much harm is going to come from it being withheld?

Read the GDNF Trial Participant profile written by Sherry Cameron about her husband's experiences in this trial: Robert Cameron survey results

 

Copyrightę 2012 Pipeline Project

All rights reserved. Revised: 01/26/12.