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Finding Hope In Helping Search For Cure By Sophia Kazmi CONTRA COSTA TIMES Posted on Mon, Jan. 19, 2004 DANVILLE -- Jim Edlund doesn't really know what to think. On one hand, he's happy that his family history of Parkinson's disease may give researchers new leads on a disease that still has no cure. But on the other, he has had to watch his father and uncle die of a disease that kills slowly and affects about 1 million Americans a year. His father's brother and sister also have Parkinson's. Edlund's paternal grandmother and his great-grandfather also had the disease. "It's a sad disease. I've watched and still am watching family members leave us," said Edlund, 48. "It's not a pretty disease. You normally think (just) of the shaking. But they can't open their eyes. They can't swallow." For scientists at the Parkinson's Institute in Sunnyvale, the Edlund family poses an interesting point of research -- they are the only known family to have an entire generation lost to the disease. Dr. William Langston, chief executive officer and scientific director of the institute, has commissioned a study of the family, with the hope that the Edlunds, who mostly hail from Washington state, can shed light on how Parkinson's is passed from generation to generation. Until last summer, the family was unaware of the institute's existence. "We met by fate," said Gary Thorud, director of development at the Parkinson's Institute. Edlund's father and uncle were twins, and Jim Edlund called for information about the institute's twins study. Thorud sent the information Edlund requested, and after answering more of Edlund's questions, the two began talking about the Edlund family connection with Parkinson's. Intrigued, Thorud set up a meeting with Langston, Jim Edlund and his wife, Chris. A family connection to Parkinson's is very rare, and a family with consecutive generations of disease is unheard of, Langston said. The twins study, which was done a few years ago, concluded that patients diagnosed with Parkinson's before age 40 had a genetic link to the disease, and that environmental factors were involved in those diagnosed after 40. But the Edlund family members with Parkinson's, all but one of whom were diagnosed in their 70s or later, may alter that study's findings, Langston said. The institute is now gathering information about the Edlund family. It has set aside money for a study and hired a researcher. The institute has completed a pedigree -- a family tree that shows who had the disease through multiple generations. Researchers will conduct clinical examinations of all living family members and take blood samples. With those samples, researchers first will see if the family has one of the known Parkinson's-carrying genes, which is highly unlikely, Langston said, because the known mutations are very rare. After eliminating known genes, the next step would be to look for new genetic mutations -- changes in human genes that may cause the onset of Parkinson's. This project would add a genetic component to the institute, which Langston founded 15 years ago. The center, which pulls double duty as a research facility and a Parkinson's clinic, did not emphasize genetic research until the Edlunds came along, Langston said. Edlund, 48, owner of a Danville jewelry store, does not yet know if he will develop Parkinson's. Neither he nor his siblings nor their children have been tested -- because the disease has only presented itself in family members 60 and older. Family studies are a common way to research the disease, said Dr. Katrina Gwinn-Hardy, program director of the National Institute of Neurological Disorders and Stroke in Bethesda, Md. Gwinn-Hardy studies familial ties with the disease, but that known population is small. Most people diagnosed with Parkinson's report no family history, she said. That's why genetic research on Parkinson's was not emphasized until recently. Many, including Langston, thought the degenerative movement disorder was caused by environmental factors -- where a person lives, chemicals patients were exposed to, or other nonbiological factors. Besides providing new knowledge to the institute, Jim and Chris Edlund are also fund-raising for research. Thorud, who is in charge of putting on the institute's annual October gala, invited the Edlunds to co-chair the 2003 event. The Danville couple, who are involved with several other charities, at first didn't want to take on the additional responsibility of putting on an event. Jim Edlund told Thorud he would think about it. But the following Sunday, a church sermon about helping a cause got to Jim Edlund. He called Thorud the next day and accepted the offer. The dinner and charity auction raised more than $1.1 million. Actor Michael J. Fox, one of Langston's more famous patients, was the guest of honor. The Edlunds were awestruck, not only by how much money was raised, but also by the people who attended -- most attendees either had the disease or someone close to them did. "(The event) was so personal for so many people," he said. The Edlunds will co-chair the event again this year, on Oct. 9, and hope to raise about $1.5 million. By raising funds, they hope to help find a cure more quickly for the disease that has afflicted his family. Jim Edlund said he believes that a cure will be found at the institute. While so many people he knows have died from the disease, Langston is reassured by believing that the deaths were not in vain. "Getting to know the Edlunds and their involvement here jump-started the genetics program here. To solve the problem of the disease, you need strong basic research, epidemiology (the study of the incidence, distribution and control of disease) and a genetics program. ... (The Edlunds) are helping finish out that last link of the chain for us." PARKINSON'S DISEASE The current theory is that Parkinson's disease -- a common, debilitating palsy -- is caused by the death of brain cells that manufacture dopamine, a neurochemical that enables the brain's motor centers to control body movement and coordination. It affects about a million Americans. Reach Sophia Kazmi at 925-847-2122 or [log in to unmask] SOURCE: Contra Costa Times, CA http://www.contracostatimes.com/mld/cctimes/news/7745232.htm * * * ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn