Being Awarded the RARE Champion Award – Patient Driven Science
Josh Sommer, Executive Director – Chordoma Foundation

He was a freshman at Duke University when a surprise diagnosis spurred Josh Sommer into entrepreneurship. His condition was called chordoma, a rare bone cancer for which there was a 30% cure rate. Fortunately the world’s only chordoma research lab was right on campus, prompting Sommer to begin an educational journey to learn more about this condition.

Using the school’s database of journal articles, Sommer was able to contact the physicians and researchers exploring the disease and speak with them about what needed to be done to bring our understanding of it to a new level. Due to few resources and not enough funding, Sommer dropped out of school to begin his own organization—one that has since raised over 2.5 million to fund research in 11 labs.

“Josh Sommer is a force of nature,” says Chordoma Foundation Board Chair, Heather Lee. “His passion and commitment for solving the mysteries of chordoma, a rare and very difficult disease, are boundless and his charisma and enthusiasm are infectious. Because of Josh, a disease that affects, literally, one in a million has drawn the interest of researchers worldwide and the Chordoma Foundation’s model of eliminating barriers may be replicable for rare disease in general.”

Together with the help of his mother, physician Simone Sommer, the two were able to connect experts and expand the network of knowledge surrounding the rare condition.

“There is a lot that one person can do to advance research for a disease by directing your efforts strategically,” says Sommer when asked about his advice for knowledge-hungry patients. “Develop a deep understanding of the disease, get to know the vocabulary that researchers and physicians use, listen to what physicians and researchers say are the biggest challenges, unmet needs or unanswered questions about the disease and then think carefully about which one(s) you can make a meaningful impact on.”