Help save a life - give your brain to science

Joe Daniell of Orlando made his final gift to his family and fellow man when he died eight years ago at age 86.
Daniell, like his mother and sister before him, succumbed to dementia. But because his brain was donated to science, he gave his wife and children a precise diagnosis for the illness that claimed his life.
He also gave researchers a peek at the mechanics of that insidious, poorly understood disease.
"The report came back that he had Alzheimer's," said his widow, Katy, 84. "It is so heartbreaking, but my daughters and I agreed that we wanted to know."
Joe Daniell's brain tissue was preserved through the Florida Brain Bank, a program that remains relatively unknown despite being more than 20 years old. Not only does the program ensure an autopsy -- the only definitive way to diagnose Alzheimer's disease -- but it also makes the tissue available to international researchers studying everything from the role of genetics to possible treatments to the accuracy of presumptive diagnoses made while people are still alive.
Experts estimate 500,000 Floridians suffer from Alzheimer's. And although it is commonly associated with the elderly, early-onset forms can strike people in their 30s. Roughly 15 percent to 20 percent of cases are thought to be caused by genetic factors.
But there have been only 1,159 donors since the Brain Bank began in 1987.
"Researchers continue to have a desperate need" for brain tissue to study, said Martha Purdy, the Brain Bank coordinator at the Alzheimer Resource Center in Orlando. The agency pushed for the program's creation.
Last year, Purdy enrolled 42 potential donors, all of whom have to undergo a complete neurological evaluation. And for the first time, she is recruiting healthy individuals or those with very mild impairment so that when they eventually die, their brain tissue can be used for comparison.
"We've been wanting to do that for years, but we are just now finding the money," she said.
While dementia patients routinely undergo tests so they can be diagnosed and treated -- a process typically covered by insurance -- a complete neurological work-up for people with healthy brains would run $3,000 to $5,000 out of pocket.
Dr. Ranjan Duara, medical director of the Wien Center for Alzheimer's Disease & Memory Disorders at Mount Sinai Medical Center in Miami Beach, said such comparative tissue samples are increasingly important as researchers study treatments designed to halt the disease.
"We're trying to develop tests to diagnose the disease very early," he said. "But if we want to know what the accuracy of these tests is, the best way is by looking at the brain itself at autopsy."
In 2007 alone, five research papers were generated from Florida Brain Bank tissue donations. And recently, UCF's NanoScience Technology Center formed a partnership with the Alzheimer Resource Center to study neurons taken from the donated brains. No donation goes to waste, Purdy said.
In spite of the importance, Purdy doesn't pressure people to enroll themselves or loved ones in the program. She tells them the diagnosis they'll get may be important for family medical history, and she assures them the donation will not interfere with memorial viewings or funerals. But she understands some people are still disturbed by the notion of organ donation.
On the other hand, some find out about the program too late.
Jo Emerson, 75, had never heard of the Brain Bank when her husband died of early-onset dementia in 1999, two days before their 46th wedding anniversary. She didn't even know there were other types of dementia besides Alzheimer's disease.
"Everyone just said it was Alzheimer's, and I believed them," said Emerson, who lives in Altamonte Springs and has two grown daughters from her marriage. "I missed my chance, and now we'll never know."