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Peggy Willocks: Fighting for Parkinson's patients picture of Peggy Peggy Willocks works at her home in Elizabethton. (Dave Boyd / Johnson City Press) By John Thompson Elizabethton Bureau Chief [log in to unmask] Lending her voice - This Carter County resident has been a national advocate for Parkinson's Disease since she was diagnosed 14 years ago. Most recently, she had a letter published in the Wall Street Journal. ELIZABETHTON -Fourteen years after she was diagnosed with Parkinson's Disease, Carter County resident Peggy Willocks continues to be a national advocate for people suffering with the degenarative disorder of the central nervous system. Willocks' latest effort was a letter to the editor printed in the Wall Street Journal on Feb. 8. The letter was a response to a Jan. 31 front-page article "When Drugs Trials Go Wrong, Patients Have Little Recourse." The article discusses the plight of Suzanne Davenport, who suffered a debilitating decline in her health immediately following a clinical trial in which an experimental drug called Spheramine was implanted into her brain. Willocks wrote that the story "hit very close to home" because she was the second person in the world to have the experimental brain surgery in 2000. Willocks explained that the Spheramine trial consisted of taking retinal cells from donor eyes and planting them in the brain of someone suffering from Parkinson's. The retinal cells produce dopamine, the chemical her brain didn't make. Much of the national financial paper's article dealt with the risks of drug trials, both for the patient and for drug manufacturers and medical institutions who conduct the clinical trials to find new cures. "My heart goes out, and I empathize with the family of Suzanne Davenport," Willocks wrote. Despite that family's tragedy, Willocks said "there are no completely failed trials. We learn from our mistakes." Willocks said she received several calls immediately after her letter was printed. One was from a total stranger in Palo Alto, Calif., who had Parkinson's for six years and told her he thought her letter was "compassionately-written." "This is how I have made connections worldwide - we are all only a click away from anyone in the world on the information highway," Willocks said. Willocks' advocacy consists of much more than writing letters. She is a volunteer in a grassroots effort to accelerate the nation's drug approval process. "The Parkinson Pipeline Project hopes to increase clinical trial participation and accelerate approved treatment options through education, consultation and participation with all stake holders - including industry and the Food and Drug Administration," Willocks said. Willocks also sits on the board of directors of the national Parkinson's Action Network and serves as Tennessee coordinator. One part of PAN's work is to include on its Web site a database of current and potential drugs and treatments for Parkinson's that Willocks said has earned credibility among the medical community. "We will put it (the database) against any other," Willocks said. One of the big problems Willocks sees is the long wait for a drug to be approved by the FDA. She said the process takes 15 years. "That's too long, especially for people like me, who have had the disease for 14 years already." "Safety concerns are a big factor in drug approvals, which is where my letter to the editor of the Wall Street Journal comes into play. True, we don't want a system that hastily runs drugs and treatment through the approval process, but we likewise don't want to die or become bedfast waiting for better treatment. The gold standard of treatment for Parkinkson's (levadopa or L-dopa) is 40 years old, and sometimes its side effects are more debilitating than the disease itself." Willocks said the Parkinson's Pipeline Project was also among the first to post a transcript of Andy Grove's comments to the Society for Neuroscience in San Diego on Nov. 4. Grove, the former chief executive officer of Intel and Time's Man of the Year in 1997, criticized the National Institutes of Health for "not thinking out of the box" and gave them suggestions for improving the system. Willocks was recognized for her advocacy work in 2005, when she became the fourth recipient of the Milly Kondracke Award for Outstanding Advocacy. She was presented with the award by Kondracke's widower, Morton Kondracke. Prior to taking an early retirement in 1998 because of the disease, Willocks was an educator and served as principal at Harold McCormick Elementary School. In 1997, she was named Principal of the Year for the state of Tennessee. Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson's Foundation [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn