Thanks to advanced technology and the family, friends, colleagues, and caretakers who make up his  “crew,” Penn neuroscientist and alumnus Scott Mackler continues to function professionally and personally a decade after being diagnosed  with the lethal neurodegenerative disease ALS.


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BY KATHRYN LEVY FELDMAN |In a laboratory on the ground floor of the John Morgan building, senior research investigator Laxminarayana Korutla and research lab technician Trevor Jackson C’07 are trying to determine how a protein in the brain known as NAC-1 interacts with other proteins in our system. In rats, NAC-1 plays a role in regulating addiction to cocaine—rats with more of the protein are less likely to become addicted, and vice versa. NAC-1 may also be an important genetic marker identifying susceptibility to addiction in humans.

To find out, researchers first isolated the protein and deleted the gene that causes the increased sensitization. Now they are trying, through trial and error, to determine how NAC-1 interacts with other genes. “It is theoretical, challenging, painstaking work that moves in incremental steps,” Korutla explains. “Every researcher builds upon the knowledge of others.”

The director of the lab—Scott Mackler C’80 PT’80 Gr’86 M’86, associate professor of medicine and psychiatry in the School of Medicine—first identified NAC-1 in 1996. That was three years before he officially learned he had Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. The condition has since left him “locked in”—mentally alert but unable to move, speak, or breathe without a respirator.

In his darkened office just off the main floor of the lab (his eyes are sensitive to bright light), he reclines in his wheelchair, attended by his longtime assistant Dana Williams. Wearing a blue rubber cap fitted with electrodes that pick up his brainwaves, Mackler stares intently at a flashing computer screen that cycles between letters, numbers, and symbols that provide the equivalent of a standard computer keyboard. Taking advantage of a brain-based communication device known as a brain-computer interface (BCI), Mackler concentrates on the number of times the screen flashes to select a letter. When he does, it appears on another screen in the body of an email. In this way, thinking letter by letter, he types about six words a minute.

Like the researcher’s quest to understand NAC-1, this is slow, challenging, painstaking work that moves in incremental steps. But it is the lifeline that allows Scott Mackler to continue his research on cocaine addiction, to publish his findings, and to communicate with his family, friends, caretakers, and the world.

A decade after his devastating diagnosis, Mackler’s mind, untouched by the motor-neuron disease, is helping to sustain him. But it is not the only thing. Because as much as this is a story about brainpower, it is also a story about the power of love.

A Life Worth Llving By Kathryn Levy Feldman
Photography by Chris Crisman C’03

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Last modified 6/26/09