Josh Sommer didn’t know it then, but the course of his career was charted after his first semester at Duke, when his terrible headaches turned out to be a rare type of cancer called chordoma.

He’s now executive director of the Chordoma Foundation, a nonprofit he started to help chordoma patients and drive the development of more effective treatments.

Nine years after leaving Duke to build the foundation, Sommer will return to campus in October as a speaker for the 2017 Duke Startup Challenge Grand Finale.

Sommer’s tumor was at the center of his skull, a difficult place for surgeons to access. After having a procedure in Pittsburgh, he stayed five weeks in the hospital, spending much of his time researching chordoma.

Sommer felt grateful that he was a Duke student and had access to medical literature through the University’s library, which gave him an on-ramp to understand what he was facing. But the statistics were bleak: The average survival period was seven years, and if the disease comes back, it’s considered incurable.

But what he discovered next was serendipitous: one of the leading researchers in the field worked at Duke, where Sommer would return as soon as he recovered.

Once he returned to Duke, Sommer and his mom met with Dr. Michael Kelley and spent several hours asking questions and learning about Dr. Kelley’s research.

Dr. Kelley needed help in his lab, and Sommer, although he had no previous experience with lab work, signed on to help.

The sophomore who had come to Duke to study environmental engineering and public policy suddenly found himself learning about cell cultures and other molecular biology basics.

Sommer became fascinated with his work in the lab, and through the Pratt School of Engineering, he was able to create his own interdisciplinary course of study, taking everything from pharmacology to economics to biomedical engineering.

Although the Duke lab’s work was progressing, it became clear that a larger, coordinated effort involving many more labs would be needed to bring new treatments to the clinic fast enough.

Out of six cell lines the lab received, only two were chordoma. The other labs were performing “chordoma research” on materials that weren’t even the correct disease.

For Sommer, this was a wake-up call. He saw this as a huge flaw in the research process and knew there needed to be an entity that could create and check on resources while coordinating efforts in the field.

In 2007, he and his mom started the Chordoma Foundation. For about a year, Sommer also continued to go to class and work in the lab while also navigating the new things he needed to learn about nonprofit organization and management.

In 2008, he received a fellowship from the social innovation fund Echoing Green. The fellowship came with one stipulation: Sommer had to be working on his nonprofit fulltime.

“I realized I was in a race against time and I had this incredible opportunity,” Sommer said. “The foundation was taking off, and so was the research. So I left school to do the Echoing Green fellowship for two years and focus on building the foundation.”

The Durham-based organization started in space in American Tobacco, but has since moved to RTP. It has grown to nine team members and is still growing; the foundation is actively searching for a chief operating officer.

Sommer said that much of the past decade has been about building the fundamental research infrastructure needed to advance new treatments from the lab to patients. For example, the Foundation has built repositories of disease models and tumor tissue, a drug screening pipeline, a clinical trials program and a patient services program. Sommer has set a goal to initiate 10 clinical trials by 2020, and the foundation is working on seven of those now.

With this track record, momentum at the Foundation is picking up. Last year, it raised $4 million, doubling the prior year budget of $2 million. The majority of this funding has come from philanthropy – both individuals affected by chordoma and others who see the Foundation’s approach as a model for rare cancer research.

Looking ahead, the Foundation is pursuing opportunities to partner with industry to drive chordoma research forward. Currently, it is working with over a dozen companies to test drugs in preclinical models and/or clinical trials. Helping to facilitate preclinical and early-stage clinical research de-risks the process for companies, Sommer said, making investing in chordoma a more viable business proposition.

Chordoma patients are never truly out of the woods, Sommer said, and one of the hard parts of his job has been losing others with chordoma who have become his friends.

But he doesn’t think much of his own statistics anymore, the ones he found online directly after his operation. He got married recently, and he’s imagining a life beyond chordoma while he continues to work on changing the statistics.

To learn more about the Chordoma Foundation, visit its website.

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