UM’s Brain Endowment Bank is looking for donors to help science

06/13/2014 2:46 PM

06/18/2014 6:03 PM

Science needs your brain. As researchers explore the mysteries of the most mysterious of our organs, they need tissue to study. They need donors who will pledge their organic intellectual matter to advance medical research.

The University of Miami Miller School of Medicine’s Brain Endowment Bank, one of five such facilities around the country and the only one in the Southeast, has received an $8 million contract from the National Institutes of Health to facilitate researchers’ access to much-needed brain tissue and to raise awareness of the need for … well, for more donated brains, both diseased and healthy.

The award, says brain bank director Deborah C. Mash, underscores the importance of brain research as “the next great frontier,” where scientists hope to unlock the clues of such diseases and disorders as Alzheimer’s, Parkinson’s, autism and schizophrenia. Spread over eight years, the NIH award also creates a network of repositories to coordinate scientists’ requests.

Tissue is usually free to researchers, but as medical science advances the demand has far outstripped the supply.

“We have learned more about the human brain in the past twenty years than throughout all of human history,” said Mash, recipient of the Jeanne C. Levey endowed chair in the Department of Neurology. “But there’s still so much more to do. We have many more scientific inquiries and needs than we have brains donated to study.”

Miami’s bank currently has about 2,000 brains. Five hundred more have been pledged by donors after they die. Half of the 2,000 have come from people who died with degenerative diseases such as ALS or Parkinson’s, while 35 percent had no known diagnosis. Only 2 percent come from those who suffered from some form of autism. The remaining brains were donated by the families of patients with mental illness.

One donated brain “supplies tissue for hundreds of researchers,” Mash said. “It’s truly a precious gift to science.”

Tissue samples have been sent around the world, including to scientists studying neurons in Stockholm, researchers looking into Alzheimer’s in Ireland and investigators in South Carolina exploring humans’ “brain-clock genes” that control our circadian rhythm. Tissue has also stayed closed to home — for brain cancer researchers at UM’s Sylvester Comprehensive Cancer Center and for the brain bank’s own scientists.

Mash would like to double the number of pledges to 1,000. She already has teams of pathologists trained to harvest the brain — which must be done within 24 hours after death — in 45 states. To spread the word, she spends many of her evenings speaking at assisted living facilities, senior centers, nursing homes, organizations — anywhere they will have her.

Getting donors to pledge is a challenge. “People don’t know they can do this,” she said. “The disease advocacy groups are engaged, but others aren’t aware of us.”

And while donating a brain is no different than donating another organ, donors must sign a separate pledge card, which is not always as readily available or publicly promoted as traditional organ cards. The reward of a traditional organ donation is also immediate — a heart transplant, for example, will save a life. The gratification for the family of a donor is almost instantaneous. Brain tissue, on the other hand, is stored and handed over to scientists who may take years to achieve a medical breakthrough.

Mash counters this delayed gratification by telling potential donors and their families: “A brain donation is truly an endowment to science. It lives on for many years and contributes to our understanding of disorders and diseases that affect our quality of life.”

Susan Miller, 65, has pledged her brain to the bank. Miller, who lives in a nursing home in Hollywood, was diagnosed with Parkinson’s in 1993 and now needs assistance for daily tasks. She heard about the bank through her doctor and the National Parkinson Foundation and signed up more than 10 years ago. “If they don’t have brains to explore, they will never find a cure for this disease,” she said. “I’m willing to do anything to help. It’s for a good purpose.”

Not everyone feels that way, she admitted. At the nursing home, as she tries to spread word about the bank, a few patients adamantly refuse to consider a donation. “They think they’re going to come back and need their brain,” she added. “There’s a lot of ignorance and fear. But what else would I do with my brain when I die?”

The Brain Endowment Bank, housed at UM’s Life Science and Technology Park building on the eastern edge of Miami’s civic and medical center, was established in 1987 after Mash completed two years of postdoctoral studies at Harvard University. Establishing the bank was not an easy sell for the neuroscientist who says she felt “privileged” to study Alzheimer’s, Parkinson’s and drug addiction. Brain research was then in its infancy and technology had not caught up to the medical community’s concern with the diseases and disorders that affect an estimated 50 million Americans. But seed money for the bank was eventually provided by the National Parkinson Foundation.

The bank opened with 21 donors. Mash’s first donated brain came from a local woman who had suffered from Alzheimer’s for six years. Mash was so touched that she attended the funeral. “It was a big deal for me,” she recalled, her eyes tearing as she tells the story. “The family even invited me back to their home. They were so committed to trying to help find out about this disease they had lost their mother to.”

Guiding a visitor through a labyrinth of offices and special labs where researchers prepare brain tissue for study, she gestures animatedly at storage areas right out of a sci-fi movie and threads her way through counters full of microscopes. In The Cold Room, plastic containers holding slices of brains ready for processing are stacked on metal shelving. Another area contains freezers that store coded plastic bags with small portions of light gray tissue.

“We as scientists haven’t done a good job of infecting the public with our enthusiasm,” she said. “But we are living in a time of discovery and we can’t send tissue out fast enough. That’s why our promise to the families [of donors] is that their donation could very well lead to the next science breakthrough.”

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