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Meet the Teen Who Helped Scientists With a Breakthrough in Her Rare Disease

March 4, 2014
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Meet the Teen Who Helped Scientists With a Breakthrough in Her Rare Disease
Cancer survivor Elana Simon explains her rare disease, fibrolamellar hepatocellular carcinoma YouTube
What happens when a high school student suffering from cancer joins a team of scientists? Elana Simon can tell you.

Elana Simon will make you wonder what you’ve been doing with all your time. After all, at only 18 years of age, she’s already a dancer, an acrobat and the co-author of a study about her rare form of liver cancer that’s been published in the journal Science, the Wall Street Journal reports.

Elana was only 12 when she was diagnosed with fibrolamellar hepatocellular carcinoma, an extremely rare form of cancer that affects just 200 people in the United States each year. Because of how unusual it is, the disease is difficult to detect and treat without surgery. Luckily, hers was found early, and after doctors removed much of her tumorous liver, she’s now cancer free.

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While she was in high school, Elana decided to learn more about her disease. With the help of her father, Sanford Simon, who runs a lab at Rockefeller University in New York City, and a team of doctors and scientists, they studied tumor samples from other people with fibrolamellar and made an important discovery after sequencing the genome of this cancer. According to a Rockefeller University press release, Elana and the researchers found DNA that “had been broken and rejoined, creating a mutated gene that had the potential to wreak havoc in the bodies of individuals with the gene.” These scientists are now trying to learn how this mutated gene causes liver tumors. Watch the video above to hear Elana explain more about her story and about the inspiring work she’s doing.

While this discovery doesn’t solve the mystery of this rare cancer, this initial finding is encouraging. Elana is now finishing up senior year and will head to Harvard to study computer science in the fall.

Who says teenagers can’t change the world?

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