Ari Eisenberg was born in 1971 with blisters on his hands. The skin on his feet had fallen off because he had kicked in the womb. He had to be fed by a nasal tube because blisters in his mouth made breast-feeding impossible.
Afflicted with a rare genetic skin disease, Ari faced a short, painful life. "I visualized his future prospects and they looked very grim," recalled his father, Dr Mark Eisenberg. "I was determined not to accept that."
Eisenberg, a general practitioner with no particular expertise in research or dermatology, set out on a quest to save his son. One thing he developed was an artificial skin. Now, 30 years later, Ortec International, a company he co-founded, hopes to market that skin to treat burn victims.
Not all biotechnology companies are started by scientists eager to advance medicine or make money. Some are started by ordinary people -- a computer salesman, a shrimp processor, meat distributors and lawyers, among others -- hoping to cure a loved one. Their stories echo the movie Lorenzo's Oil, but with a corporate twist.
Nor are scientists already working at biotechnology companies immune from making a business of their personal crusades. Dr Julia Levy was chief scientist at a Canadian biotech startup working on a cancer drug when her mother was diagnosed with age-related macular degeneration, an eye condition that causes blindness.
"I had never heard of the disease," Levy recalled. But after hearing scientists discuss it at conferences, she realized that her company's drug might work for the eye condition. Today, Levy is president of the company, QLT Inc, which sells the only drug for macular degeneration.
Many people with sick relatives will try to collect money, start a foundation, lobby Congress, harangue scientists and take other steps to spur research on that disease. But some say nonprofit research is not enough to bring a drug to market. They start companies to try to get the job done.
At first, Martine A. Rothblatt, a Washington attorney and satellite entrepreneur, started a foundation to seek a cure for pulmonary hypertension, a potentially fatal condition that afflicts her youngest daughter. Then Rothblatt went on to start United Therapeutics, which is now seeking Food and Drug Administration approval of a drug for the disease.
"If you want to cure something you have to do it yourself," she said.
In perhaps no other industry could such a personal stake be so crucial to the start of a business. But having an executive desperate to save a relative can be a double-edged sword for investors. It motivates the executive but can divert corporate attention to, say, a rare disease offering only limited sales for its products. And there can be many emotional distractions.
"What looks like greater motivation could be a shell for what later ends up breaking that person apart," said David R. Cox, a Stanford University geneticist and pediatrician who often deals with parents of children with rare genetic diseases. Many such parents, he said, plunge into work on a cure as a way to "avoid dealing with the difficult reality" facing their children.
That was an issue raised in Lorenzo's Oil, the 1992 movie based on a true story of parents who developed a drug to treat their son's rare neurological disease. But not all such stories end so hopefully.
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