Nick Nelson loved his job as a newspaper reporter for the Corpus Christi Caller-Times. He enjoyed asking politicians the tough questions. He thrived on the adventure of investigating. He took pride in fostering healthy debate about local issues, such as real estate development on South Padre Island. During his time as a reporter, he learned about a controversy brewing in the Parkinson's disease community around a scientific compound called glial cell-line derived neurotrophic factor, or GDNF. His interest led him to research and and write some news stories. In the mean time, the demands of investigations and stories on unrelated issues came and went. Nevertheless, Nelson could not get the GDNF story out of his mind. There were so many people affected; and, GDNF appeared to have so much promise. Why did research and development just stop?
Nelson started to use his own time to research the complex GDNF story. Phone calls developed into contacts. Contacts led him to new facts, and many conflicting opinions. Soon, he found himself using his own money to crisscross the country and interview patients, scientists and physicians. His interviews and research taught him the stories and the science. He learned that many of the people that participated in the clinical trials experienced very substantial improvements in their health. He and saw their videos of miraculous recoveries. He also witnessed their decline after GDNF research ceased.
According to Amgen, the company that owns the GDNF patent, it is a protein . . . "found in the central nervous system that promotes the growth, regeneration and protection of specific nervous tissue." In Phase II clinical trials researchers infused it into patients' brains, over time, using small implanted catheters. They hoped that GDNF's ability to regenerate nervous tissue would regenerate portions of Parkinsonians' brains. Amgen haulted the trials citing a lack of data proving GDNF's effectiveness, and citing safety issues. This frequently happens in clinical trials, for very good reasons. However, many within the PD community were devastated. They had experienced dramatic improvements. Some study participants have even sued Amgen, hoping to force it to continue provide GDNF.
So, last week Nelson took the leap. He left the security of employment and a benefits package to pursue the compelling story. He is writing a book that will detail the GDNF saga, and address a number of questions in all of our minds. My Parkinson's Info had a chance to talk with Nelson today.
"This is already an issue that has attracted nationwide media attention. As different milestones have come up in this case, it has been covered there," Nelson said.
GDNF stories have appeared in many of the nations most prominent newspapers. 60 Minutes sent Lesley Stahl to investigate the controversy as well. Click here to read transcripts and view video from the 60 Minutes story.
"As of yet, no one has taken an in-depth look at the chronology. I intend to write about this from the more human perspective than the more cool, clinical, and scientific approach," said Nelson. "The success of this book, hinges on the participation of people who are close with this issue."
Perhaps you, a loved one or a friend participated in the GDNF clinical trial. If you have insight about GDNF, the Parkinson's community, the scientific community and Nelson could benefit from your help. He welcomes your emails at GDNFbook@Gmail.com, with your knowledge and opinions about GDNF. His book's answers have the potential to return these issues to the forefront, or partly pacify the countless people who wonder why this miracle evaporated. Nelson's website http://www.gdnfbook.com/ serves as command central for his activities. There you can follow links to a number of GDNF articles and resources.
