After almost two years of constant stomach pains, Elana Simon was twelve years old when she was diagnosed with fibrolamellar hepatocellular carcinoma, or FHCC, which is a rare liver cancer with a 32 percent survival rate. Thankfully, Elana’s doctors were able to remove her 15 cm tumor, which had enveloped two thirds of her liver, and she has been in remission ever since. This early battle with cancer forever changed the course of Elana’s life—giving her a specific focus and making her think of science as a way to understand her disease.
After surviving cancer and then seeing so many other kids suffer with their cancers, Elana developed the drive to become a young champion for cancer research. While still in high school, she worked in a pancreatic cancer research laboratory at the Mount Sinai School of Medicine, where she learned genetic sequencing. This inspired her to study the genetics of FHCC. At seventeen, she started studying the genetics of her own cancer at the Rockefeller University lab or her father, Sanford Simon. Elana and her team soon found one genetic mutation common to all patients with FHCC, and their work was published in Science magazine when Elana was just eighteen. Their findings have been re-affirmed by doctors around the world. In 2014, Elana became the first recipient of the Young Champion in Cancer Research Award from the American Association for Cancer Research and she participated in the White House Science Fair.
Elana is a wonderful example of the next generation’s scientist and cancer researcher who is looking for answers and cures. Now nineteen and a sophomore at Harvard University, she studies computer science because it’s an important medical tool she wants to have. She also continues to work on the diagnosis and treatment of FHCC, and is a passionate advocate of precision medicine. Last year, Elana was invited to the White House for the launch of President Obama’s Precision Medicine Initiative, a new era in medicine in which researchers, providers and patients will work together to develop individualized care. The president asked Elana to write his introductory speech.