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By: Jennifer Bails
Fourteen hours after entering the world, Noah Rothberg stops breathing. His skin turns blue, his blood unable to feed his cells and tissues with enough oxygen. In a terrifying instant, the hospital room swarms with medical personnel. The newborn is rushed from the protective cradle of his mother’s arms to the neonatal intensive care unit. The NICU is dimly lit, with the drone of beeping monitors and wheezing respirators punctuated by the occasional infant’s cry or alarm. Specialists stabilize Noah, placing him in an incubator to warm his tiny body. He is placed under oxygen. An IV delivers fluids and drugs. Chest wires track his vital signs.
In the nearby waiting room, Noah’s father, Jonathan Rothberg, paces in shock. It has been a matter of only hours, but already it seems like a lifetime has passed since he and his wife, Bonnie, were celebrating their son’s birth. Now they are confronting an all-too-familiar nightmare. Three years before, the couple’s daughter, Jordana, was diagnosed at six months old with tuberous sclerosis complex, a rare genetic disorder that can cause benign tumors to form in the eyes, heart, kidney, skin, lungs, and brain. Symptoms range from mild to severe, but doctors warned that Jordana might never speak and could suffer from seizures and other life-threatening complications.
Still reeling from these possibilities, Rothberg tries not to fall apart in the face of Noah’s crisis. He spends a sleepless night on the waiting room couch as doctors run tests to figure out what’s wrong. What he finds most unbearable is the lack of answers. “Why can’t I have complete information on Noah?” he wonders.
To Rothberg, a biotech entrepreneur, “complete information” means viewing Noah’s genetic code to see whether he has an inherited disease. The twisted ladders of DNA that form each person’s genome are comprised of three billion “letters,” or chemical bases. Rothberg wants to read the “words,” or genes, spelled out by Noah’s unique sequence of these bases, which could reveal why his son is fighting to breathe. He thinks, “Why can’t we sequence his genome so we know what to worry about and what not to worry about?” But he understands that’s out of the question.
In 1980, British biochemist Frederick Sanger shared a Nobel Prize for developing a process to read the exact order of chemical bases in DNA. Scientists working on the Human Genome Project throughout the 1990s built factories of huge sequencing machines that used this method to collectively decode one human genome for the first time. It took longer than a decade and almost $3 billion to reach that milestone. As of July 1999, when Noah Rothberg is born, there’s still no faster, cheaper way to crack the genetic code.
Rothberg learned how to sequence DNA while working in a lab his junior year at Carnegie Mellon, where he studied to be a chemical engineer like his father. He is the sixth of seven children raised in a family of technology-minded entrepreneurs in New Haven, Conn. He often went on sales calls as a boy with his dad, Henry Rothberg, who founded Laticrete International, which makes adhesives for stone and ceramic tile.
During his senior year at Carnegie Mellon, Rothberg heard Steve Jobs speak in Hunt Library after the launch of the Macintosh; he had been clipping articles for years about the Apple co-founder and still has a 1982 Time magazine cover about the late computing legend. Jobs told the audience the secret to his success was to “just do it,” several years before Nike coined the phrase.
“I wanted to understand if Steve Jobs was made out of something different than the rest of us, but he explicitly said you are really defined by what you do,” Rothberg recalls. “It was that ‘aha’ moment, where I realized life was about doing as opposed to hesitating. And it reminded me of something my mother told me: You don’t go through life with your IQ on your forehead—what matters is what you do with yourself.”
After graduating from Carnegie Mellon in 1985, Rothberg saw his chance to “just do it” by applying his chemical engineering degree, and what he had learned about DNA, to the burgeoning field of molecular biology: “I realized there were huge opportunities for an engineer to systematically improve biological methods like DNA sequencing.”
In 1991, after earning his PhD in biology from Yale, he started a company called CuraGen in his basement. On his team were Craig L. Wiener (S’85), Gregory T. Went (E’85), Leonard D. Bogarad, and John W. Simpson. There, he mined the troves of genetic data being generated by the Human Genome Project for new drug targets. For instance, the company developed an antibody now in clinical trials for treatment of breast cancer and melanoma. It was the height of the dot-com boom, and stocks of genomics companies, in particular, soared. CuraGen filed its public offering in 1998 and soon afterward became the fastest rising stock on NASDAQ. At its peak, CuraGen had a $5 billion market cap—higher than American Airlines.
In 2001, CuraGen landed a $1.5 billion deal with Bayer to develop drugs for obesity and diabetes. Rothberg was ranked 37th that year on the Fortune magazine list of America’s 40 richest under 40, with an estimated net worth of $168 million. “I would be on the top of your rich list if I had skipped graduate school,” he quipped to the publication with trademark exuberance.(Continued …)