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Author of Forthcoming GDNF Book Shares Excerpt with My Parkinson's Info 04/04/07 General, Clinical Trials "The Uncured" follows the experiences of six patients who volunteered to have holes drilled into their skulls, tubes threaded beneath their skin and hockey puck-sized pumps implanted in their bellies, all in the hopes that GDNF would provide the relief that no existing treatment could. Journalist Nick Nelson conducted more than 100 interviews in the United States, Canada and Europe for the book. The 65,000-word manuscript weaves a David-and-Goliath tale of a meager group of determined patients who take on the world's largest biotechnology company for the right to live. "The Uncured" is the true story of a drug that was truly different. When a young surgeon-inventor pumped GDNF into the brains of Parkinson's patients, he witnessed the seemingly impossible. In the face of a disease characterized by its progressive worsening, the patients on GDNF got better. They could walk, talk, smile, smell and make love again. Clinical trial volunteers in England, Kentucky, New York and Chicago reported marked and sustained improvement. It was an "Awakenings" of sorts for the patients, some of whom had lived with Parkinson's for more than 30 years. In September of 2004, Amgen Inc. halted all human testing of the drug abruptly and indefinitely. Amgen officials said new safety concerns made GDNF too risky, but many of the patients suspected it was really just about money. They fought - and continue to fight today - for access to a drug they describe as miraculous. Book Excerpt Introduction - Case No. 1: Stephen Waite It was a brisk, overcast winter morning in 2001 when Stephen and Margaret Waite drove to downtown Chippenham, a town between Bristol and Swindon in southwest England. Stephen parked his car in front of the five-story, steel and glass St. Paul office building, and he held the door open for Margaret and they both entered. The couple stood in line for half an hour before a pretty young woman from the Social Security Department asked them to follow her to a small, boxy room, empty except for a desk and three chairs. Most entered that room hoping to plead or cajole their way into new social security benefits. There was a conspicuous red call button on the desk that threatened to bring security guards running if one wouldn't take no for an answer. The young woman looked bewildered when she heard Stephen's request. The man had just handed her a stack of government disability checks - payment slips he could have exchanged for cash. He was returning them, the man explained with an impish grin. He didn't need them any more. Since she began working at the Social Security Department, she told Stephen, she had never seen a person hand them back before. This was highly irregular. Stephen explained that Parkinson's disease had once left him unable to work and, 10 years prior, had forced him to apply for benefits. But now an experimental drug was curing him. He now had plenty of work and felt guilty accepting government aid. She looked incredulous and said, If you take a turn for the worse, you can come straight back. Nick Nelson has completed the manuscript for "The Uncured", and he is currently sharing it with book publishers. So, it may be a while before the "The Unicured" is on bookstore shelves. If you have knowledge of the GDNF controversy that you would like to share with Nick, he would welcome your email at [log in to unmask] If you know people in the publishing world that might be passionate about "The Uncured" he would also appreciate talking to you. My Parkinson's Info will share more of the book excerpt in the monthly newsletter we send out next week. If you would like to receive the newsletter, simply register in the form on the left side of the web page. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn