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A Fast Tracker On A Life Or Death Mission



Sharon L. Monsky has always thrived on competition. As a teenager, she traveled the world as an internationally ranked figure skater. In the early 1980s, she became a management consultant at McKinsey & Co., where her life was a series of 12-hour days and late-night, cross-country flights. Under the watchful eye of boss Robert H. Waterman Jr., the management guru who co-authored In Search of Excellence, she was clearly a rising star. "Had she stayed at McKinsey," says Waterman, "I'm convinced she'd have become a director."

Sharon Monsky is still running flat out. But the competition is no longer about promotions and pay raises. In 1983, her McKinsey career was cut short when she was diagnosed with an obscure, but often fatal, autoimmune disease called scleroderma. Now, in a race for her life, the hard-charging 39-year-old is managing a foundation she started in 1986 to help find a cure. "That's the contribution I want to make in my life," she says. "It's my mission."

Little is known about scleroderma. Why it occurs remains a mystery. Nevertheless, the medical establishment's best guess is that some 300,000 people suffer from some form of the disease. It tends to strike women in their childbearing years, causing the body's production of the protein collagen to go into overdrive. That contracts and toughens the skin, disfiguring the victim and restricting movement. In mild cases, the condition remains localized. But in severe cases such as Monsky's--which comprise roughly half of the total--the collagen buildup can ultimately lead to a fatal hardening of vital organs.

VISIBILITY. Despite its reach, however, scleroderma has never garnered much in the way of research dollars (chart). Last year, the National Institutes of Health (NIH) granted only $3.9 million in research funding. And in the seven years since its inception, Monsky's Scleroderma Research Foundation has raised just over $2 million.

The problem is one of recognition. Since the disease is not well known--perhaps because until recently doctors had problems diagnosing it--scleroderma has attracted little private funding. That discourages researchers, who make the proposals for federal dollars. Diseases that are more widespread or those that affect children, such as cystic fibrosis or muscular dystrophy, have long had successful PR campaigns. Scleroderma, by contrast, has lacked a celebrity champion or other efforts to make it a public issue.

While Monsky has yet to make scleroderma a household word, "she has greatly enhanced its visibility almost single-handedly," says Dr. E. Carwile LeRoy, a professor of medicine at Medical University of South Carolina in Charleston. Drawing on the skills acquired during her brief career at Mc-Kinsey, she has attacked scleroderma as a marketing executive approaches a new product introduction. She has researched the market thoroughly, differentiated her product accordingly, and organized publicity to win over converts.

CLOSER TIES. In countless interviews with doctors and other experts about scleroderma, Monsky discovered that medical research is often impeded by the lack of coordination among scientists. In many cases, they end up competing for the same funding dollars and are slow in sharing research results.

To avoid such infighting, Monsky devised a new approach: She formed an interdisciplinary team of researchers from the San Francisco Bay Area and persuaded them to work more closely together. How? Grants from the Scleroderma Research Foundation are conditional upon open sharing of findings to avoid needless duplication. "We're so naturally competitive, we don't like to share," says team member Youn H. Kim, an assistant professor of dermatology at Stanford University. "But this way, we don't have to wait until one group presents [to collaborate]."

Some researchers criticize Monsky's teamwork approach. They complain that a lay person should not have such a big role in orchestrating the direction of research. But Monsky has plenty of expert counsel. Despite her foundation's puny size, she has loaded its board with such medical-establishment heavyweights as National Academy of Sciences President Bruce M. Alberts. And Monsky's lobbying of Senators Barbara Boxer (D-Calif.) and Sam Nunn (D-Ga.) has resulted in her appointment last year to one of the advisory councils at the NIH. There, she has made connections that are helping get a second research team up and running, this one on the East Coast.

Having made solid progress courting the medical community, Monsky is now working on the general public. Upon learning that Lily Tomlin had lost an aunt to scleroderma, Monsky spent five years writing, faxing, and phoning the comedian until Tomlin finally agreed to meet her for 10 minutes last year. Three hours later, Tomlin emerged from the meeting committed to hosting and performing at the organization's annual fund-raiser. Held July 11, the event was attended by such luminaries as Diane Keaton, James Woods, and John Candy. It raised $200,000.

There's little doubt that the personal nature of Monsky's appeal helps win interest. Those she has wooed to the cause are impressed by her doggedness and willingness to drag her misfortune into public. Regis B. Kelly, a leading molecular biologist at the University of California at San Francisco, was skeptical about Monsky's foundation before he met her. Now, he's on the board. Normally, he says, an organization with such limited resources wouldn't merit a lot of attention. "But," he says, "her intensity and courage were amazing."

MOUSE THAT ROARED. Monsky, who grew up in Omaha, has been on the fast track ever since she began figure skating at age seven. By the time she was 11, she was spending most of the year at skating camps in cities such as Colorado Springs or Los Angeles. She eventually decided school was more important, and after graduating with an economics degree from Pitzer College in Claremont, Calif., she earned an MBA at Stanford University. She married college buddy-turned-sweetheart Mark Scher in 1977 and signed on with McKinsey's San Francisco office in 1980.

Now living with her family in Santa Barbara, Monsky surrenders as little as possible to scleroderma. "I refuse to let it dictate my life," she says. She has had three children--despite doctors' warnings that the disease would hinder her body's flexibility during pregnancy. When her eight-year-old son Max took up in-line roller skating, she did, too, even though a fall could be disasterous: The disease hinders blood flow, rendering her bones dangerously brittle.

There are other effects, too. Monsky's hands lack mobility, and she sometimes has to work from bed because she's too stiff to get up. Worse, the collagen buildup has caused lung disease that limits breathing capacity. While an experimental drug helps alleviate the symptoms, Monsky knows a cure may not come in time to save her life.

But she remains upbeat. When she was diagnosed a decade ago, doctors gave her just seven years. Friends and family agree the work has helped keep her going. "As I've gotten sicker, I've found I love life even more," Monsky says. Scleroderma's other victims could hardly hope for a better champion.THE PAUCITY OF SCLERODERMA RESEARCH FUNDS

Disease Estimated number of NIH research dollars

Americans affected spent in 1992


CYSTIC FIBROSIS 25,000 $53.1



SCLERODERMA 300,000 3.9



Amy Barrett in Santa Barbara, with Joan O'C. Hamilton in San Francisco

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