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No Time For Tears


People: CRUSADERS

NO TIME FOR TEARS

When the news came--the news he both dreaded and expected--Brad Margus was away on business, visiting customers of his shrimp-processing company. His wife, Vicki, heard first. Two of their three boys, Jarrett, 4, and Quinn, 2, had ataxia-telangiectasia, or A-T. If the disease progressed as expected, they would be dead by age 20.

TV movies prime us to expect miracle cures and happy endings from such circumstances. In life, more often, a devastating disease hits, a family grieves and learns to cope, and eventually, inexorably, the illness prevails. If the disease picks on the children of a Brad Margus, though, the killer is in for a fight.

GENE HUNTING. Brad and Vicki Margus grieved for about six weeks. Then they got busy. Within four months, they formed the nonprofit A-T Children's Project. Working nights and weekends while running his company, Kitchens of the Oceans Inc., Brad Margus recruited top scientists worldwide to do research, tapped companies for funding and gene-hunting gear, lobbied Congress, and built a database of victims of the little-known disease. Eighteen months later, the A-T Children's Project has funded $1 million in research, sponsored three conferences attended by researchers from around the world, begun collecting victims' blood samples, and helped found a clinic at the Johns Hopkins Hospital. Says J. Craig Venter, head of the Institute for Genomic Research: "I've never seen anyone do so much in so little time."

For Brad Margus, 34, it's all in a 19-hour day's work. Confronted with crisis, he fell back on what he knew best: business. Growing up in Tokyo, Margus first carried a briefcase as a four-year-old traveling with his father, Al, who ran H.J. Heinz Co.'s Asian operations. In 1971, his father joined the Deerfield Beach (Fla.) processor now called Kitchens of the Oceans, and the family returned to the U.S. Brad peeled his first shrimp at 11, bulked up for high school football by toting 70-pound cases of crustaceans, and designed a shrimp-peeling table at 16. While earning an MBA at Harvard University in 1985, he tracked the shrimp company's numbers via computer hookup. Before graduating, he helped his father engineer a $5 million management-led buyout.

For a time, life was idyllic. Margus wed Vicki, whom he had met at a Harvard computer lab. They had three sons and moved into a four-bedroom home on a five-acre spread outside Boca Raton. Brad took over Kitchens' operations as his father moved toward retirement, and the company thrived. He built a network of suppliers in Indonesia and Thailand and invested in a processing joint venture in Ecuador that let him halve his U.S. workforce while boosting production. In 1993, sales jumped 27%, to $57 million, and profits climbed 8%.

Then Jarrett, the middle son, began bumping into walls and falling down a lot. A neurologist ascribed the problem to a birth accident and said it wouldn't grow worse. First son Cole had no balance problems, but when Quinn began to walk, he was clumsy, too. The problem was obviously genetic.

Batteries of tests followed. A-T is rare--there are only about 600 known U.S. victims--and it's often misdiagnosed as cerebral palsy. But cerebral palsy, for all its cruel consequences, has nothing on A-T. Children with A-T begin losing balance around age 2 and have slurred speech when they start talking. Loss of muscle control usually puts them in wheelchairs by about 10. By 15, they can't move their eyes to read. Cancer and immune deficiencies are common. Victims rarely live beyond 20.

The Marguses spent $60,000 searching for a diagnosis, consulting specialists in Miami and New York, and sending skin and blood samples to Seattle and Chicago. Finally, a French neurologist visiting Miami Children's Hospital diagnosed A-T. "That was the bad one, the worst diagnosis anyone would suggest," recalls Al Margus. Brad thought he was prepared for the worst but found he wasn't. "The first month after the diagnosis," he says, "it's almost like you grieve the death of the sons you thought you had."

Then his business training kicked in. First, he decided, he needed basic research. He began reading chemistry and genetics texts and recruited Leon Kapp, a molecular biologist at the University of California at San Francisco, to tutor him through a nightly exchange of faxes. He also wrote to 160 venture-capital firms and 40 biotech companies, suggesting that since A-T is linked to cancer, A-T research might lead to a lucrative screening test for cancer. None bit.

FREE TICKETS. With no research funding in sight, Brad and Vicki formed the A-T Children's Project, eschewing the name "foundation" because it implied permanence. Working at side-by-side computers in their family room, they developed a plan by benchmarking the work of other foundations. After identifying experts through medical literature databases, Brad met with top cell biologists, chemists, and geneticists. He solicited every foundation and trust that had donated to medical research, not only in Florida but in California and New York--where the money is--then worked Harvard B-school's alumni directory so hard the school ordered him to stop.

The campaign began to bring results. Although most funding still comes from family and friends, it was a coup when noted geneticist David Cox signed on as scientific adviser. Margus got his first conference off the ground in part by sending researchers free airline tickets--thanks to a former classmate who created a bank for donations of frequent-flier miles.

There have been disappointments. After locating the top six A-T researchers, Margus was discouraged to learn that two aren't on speaking terms. This year, he canceled four grants because the researchers weren't focusing intensively on A-T. Now, Margus reviews every recipient's progress after six months.

To sustain momentum, Margus employs a "critical path" approach to anticipate needs several steps beyond the present. "Brad flow-charts his entire life," says Vicki, seated at a desk in the Project's new offices in Boca Raton. While scientists hunt the A-T gene--one using an $80,000 gene sequencer donated by Perkin-Elmer Corp.--Margus is already contacting protein experts who would help develop gene therapy. He has established a bank of blood samples at Coriell Cell Repositories in Camden, N.J., and has opened channels to regulators to speed human trials once a therapy is developed. Researchers expect the A-T gene to be found within a year. Developing a cure will take years more. "It's not crazy to say that a therapy in five years is possible," says Cox. On the other hand: "How many people have succeeded in doing this? Zero."

"DOUBLE LIFE." All the while, Margus has worked to keep Kitchens of the Ocean afloat. Under tremendous stress and operating on little sleep, he says he can be short-tempered and impatient at work. "Someone's complaining to me about a tough sale, and I'm thinking, `You're marginal, pal. For what I'm paying you, I could be funding some great scientist,"' he says.

Margus concedes that the company has suffered. When a market developed for high-end shrimp sales at retail, he was slow to respond. Reducing his international travel also slowed his move into shrimp-farming in Ecuador. When he travels now, Margus tries to visit an A-T family and a researcher or lab. "You should be thinking about your business from the time you step into the shower until you go to bed," he says. "But sometimes now, it seems a little trivial."

Even so, customers say, Margus doesn't neglect details. "He leads a double life. I don't know how he does it," says Roger D. Anderson, president of Seafood Partners Inc., whose unsolicited $1,000 donation was the Project's first nonfamily contribution. "He could use his situation as an excuse, but he chooses not to," says Joseph Leahy, senior seafood buyer for Red Lobster restaurants. To help keep the company on an even keel, Al Margus, 68, has returned to work nearly full-time.

Brad Margus doesn't know, of course, if his efforts will pay off in time to help his sons. Home from work at 6:30 one recent evening, he watched Cole, now 7, and Jarrett, 6, chalk a large portrait of Vicki on the driveway. It was complete down to the baby growing inside her. It's a surprise pregnancy, and doctors say the child won't have A-T. Quinn dragged a tumbling mat onto the grass, and, following Cole's lead, Jarrett and Quinn, 4, did their best to turn somersaults. Laughter rolled off the mat.

The parents clearly savor the boys' efforts. And they hope--against hope perhaps--that their own strivings may make such scenes possible for longer than is likely. Margus doesn't ignore the disease's timetable. "It's my nature to consider all the scenarios, so I don't blank out the scenario that we won't succeed," he says. "The consolation is, of course, that the work we're supporting will eventually help a lot of kids. It's not wasted effort at all." It's a damnable consolation to accept.

CHASING A CHILD KILLER

NAME Ataxia-telangiectasia, or "A-T."

SYMPTOMS Around age 2, muscle control deteriorates. Cancer, immune deficiencies common. Victims wheelchair-bound by 10, totally disabled in teens. Fatal by 20.

VICTIMS At least 600 U.S. children; 1% of population are thought to be carriers. Gene may be a factor in thousands of cancer cases.

OUTLOOK Gene that causes disease may be identified in a year. Developing a cure will take years.By David Greising in Boca Raton, Fla.


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