The Human Face Of Pharma
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June 19, 2006
Racing For Cures
Chemist sets his sights on improving quality of life while tracking elusive cures for a rare disease afflicting his child
Linda R. Raber
Clark Eid is a Ph.D. drug discovery chemist working for a pharmaceutical company in New York. He is also the father of Amanda Eid, a 14-year-old girl who has Rett syndrome. A devastating diagnosis, Rett syndrome is a progressive neurodevelopmental disorder that occurs almost exclusively in girls. Eid's role as a chemist and Amanda's dad has infused his work with urgency tempered by a deep understanding of the difficulties in finding cures not just for Rett syndrome, but for all diseases.
Courtesy of Clark Eid |
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Happy Family Eid and his wife Mary Potter along with their children Noah and Amanda. |
Rett syndrome is relatively rare. Children with Rett syndrome develop normally until they are between six and 18 months old. Then, they stop learning new skills and gradually or suddenly lose the ability to do things that they had already learned to do, such as controlling their hands, speaking, and walking. Severe scoliosis and muscle wasting often land the girls in wheelchairs. Symptoms tend to worsen, then stabilize during the teenage years, but they do not generally improve.
C&EN readers may remember Clark and Amanda. In 2000, Clark built a kayak, christened it Double Helix, and organized the Great Mississippi River Race for Rett Syndrome. Along with a colleague, Eid raced other kayak teams down the entire length of the Mississippi River—from its headwaters in Itasca Park in Minnesota to the Gulf of Mexico—to raise research money for and awareness of Rett syndrome (C&EN, Dec. 18, 2000, page 37).
"When I'm on a drug development project, I take a deep critical look at the biology involved. I'll take extra time and make molecular tool sets for the biologists," he says. These tools can accelerate success-bound projects as well as quickly identify those projects that are doomed to fail because the underlying premise is not sound.
Eid talks about his work with a sense of impatience. "I don't have the tolerance to waste time. Not that other people do," he says. "I take the projects I work on very personally, and I'm not going to suffer through one that is not put together correctly. I'd rather move on to something that is going to have an impact."
But finding a cure for Rett syndrome may be far in the future. When asked about the future for children like Amanda, he says there will be "more suffering." He believes that the medical advances being pioneered today will likely help people in the future but probably not the current generation. He says that improving the quality of life for people with serious illness is probably a more realistic goal in the short term.
He is frustrated at times when dealing with parents, nonprofit groups, and nonscientists who have the best of intentions but who do not grasp the complexity of drug discovery. "There are a number of groups jumping into gene therapy who believe that it holds the promise of cures within just a few years," Eid says. "It is incredibly frustrating to hear that."
He understands that it's difficult for people who are not scientists and who haven't been in the pharma business to understand that "even with an army of people who have top-shelf resources, you still can't crack some of the simpler targets." For example, "the war on cancer has been going on 40 years," Eid points out, and "we can effectively treat only a few cancers. But for the vast majority, we're still going at them with the chemical equivalent of stone tools."
The family continues to fight on. They organized a canoe race on the Mississippi River in 2003 (www.mississippichallenge.org), in which Eid set a world record, and the family takes part in Rett syndrome "stroll-a-thons." These events help to move research and awareness forward, they believe. "Slow progress is still progress, and it will help someone some day," Eid says.
