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Unlocking Alzheimer's: Donated Brains Are Vital to Researchers Studying the Disease

Posted on: Friday, 16 June 2006, 15:00 CDT

By Jennifer L. Boen, The News-Sentinel, Fort Wayne, Ind.

Jun. 16--After seeing patients all day, neurologist and medical researcher Dr. Fen-Lei Chang heads to the third floor of Classroom Medical on the campus of Indiana University-Purdue University Fort Wayne.

In a small lab, he dons a white coat and surgical gloves before gently lifting a rounded-edge organ from a container of preservative. He checks the blood vessels, the various lobes and the size of the interior ventricles. Magnified 200 times under a microscope, a specially prepared, ultra-thin slice of the organ -- a brain -- reveals circular dots of black with yellow edges and yellowish spiderlike formations throughout the specimen.

"This is classic Alzheimer's," Chang says of the plaque and neurofibrillary tangles that are hallmarks of the disease.

Across town, Fort Wayne attorney Mary Thomas wonders how much of her 84-year-old mother's deteriorating mental and physical condition is due to normal pressure hydrocephalus, or NPH, and how much is due to Alzheimer's. She's been diagnosed with both. NPH is a neurological disorder that's treatable if caught early.

Thomas and her mother do not know Chang and his colleague Dr. Robert Sweazey -- but they are linked. The brains of Thomas and her mother will one day be among those at the medical school's brain bank, formally the CNS Tissue Bank for Alzheimer's Disease and Related Conditions. Chang and Sweazey hope others like them will sign cards donating their brains to the regional brain bank for research.

"I don't know if we'll find a cure, but I want us to be on the map," Chang said.

Since the Brain Bank, one of three in the state, became active early last year, 19 brains have been received, the majority from people with Alzheimer's. Chang says it's a good start. The Terre Haute Brain Bank, for example, averages six to seven a year.

It is Chang's and Sweazey's passion as they work in laboratories at the Indiana University School of Medicine's Fort Wayne campus to uncover what causes Alzheimer's disease, and to help find earlier and better means of detection that may one day lead to prevention or a cure. Because Alzheimer's is not found in any other animal, including primates, research is limited without both diseased and healthy brains to study.

Mary Thomas is only slightly at greater risk for Alzheimer's because her mother has it. Only 5 to 10 percent of cases are familial, and most of those strike early, with noticeable memory loss and other symptoms setting in before age 65, Chang said.

Chang and Sweazey get their specimens, on average, 3½ hours after the donor has died. To be useable, they must come within 24 hours. Chang praised area hospice services, the local office of the Indiana Organ Procurement Organization and funeral homes as being excellent partners in notifying them when a donor has died.

Chang and Sweazey remove the brain per autopsy protocol, so an open-casket funeral is possible.

People seem more hesitant or squeamish about donating a brain than other body parts, Chang said. "The brain touches to the very essence of who we are. It always catches our imagination. There are some mystery aspects of the mind."

Thomas, who is power of attorney for her mother, knows her mother can't be helped but hopes she can help others by shedding additional light on Alzheimer's and NPH. The donation also will bring some closure in that the family will know her diagnosis for sure.

"This would help me and the rest of her family have a little peace of mind to know for sure, even though it would be after the fact. We all want a cure, but a better diagnosis is also important.

"Alzheimer's in years past had such a negative connotation. You need to talk about it like any other disease -- heart disease, kidney disease, cancer. The only way we can learn about the disease is to study the anatomy of it. Donation is just common sense."

Said Chang, "I feel one day we'll crack the code, whether the cause proves to be environmental, genetic or a combination."

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To be a brain donor

To be a voluntary brain donor requires more than signing the organ donation line on a driver's license: --Obtain a special donor card from Indiana University School of Medicine-Fort Wayne by calling 460-3257 or toll-free at 1-800-866-6463, Ext. 3257. --Fill out the card and keep it in your wallet. --Discuss your wishes with your family and your medical power of attorney. --When death is imminent or at the time of death, a family member or friend should notify staff from the medical school's CNS Tissue Bank for Alzheimer's Disease and Related Conditions as soon as possible. Call one of the phone numbers listed on the donor card. --Tell the funeral home of the planned donation. --There is no cost to donors or families. Neither do families receive any money for a donation. --Note: No one with a highly contagious disease or an infection of the central nervous system can be a donor. --For more information: Call 460-3257.

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Copyright (c) 2006, The News-Sentinel, Fort Wayne, Ind.

Distributed by Knight Ridder/Tribune Business News.

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Source: The News-Sentinel (Fort Wayne, Ind.)

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