Doing Better at Doing Good

Doing Better: Chordoma Foundation spurs change by following key principles

CorrespondentsJanuary 18, 2014 

For most college students, figuring out what to do with their lives is a big part of the undergraduate experience.

For Josh Sommer, the answer arrived almost immediately.

In the fall of his freshman year at Duke University in 2006, Sommer began enduring terrible headaches. Tests revealed a nightmare scenario: chordoma, a rare bone cancer, at the base of his skull.

Chordoma sufferers have a high recurrence rate and live, on average, for just seven years after diagnosis. As Sommer was stunned to learn, that’s largely because the only treatment options are surgery and radiation. Chordoma is an “orphan disease” – one so rare that drug companies have not invested in any therapies for it.

After surviving a surgery that removed the tumor but couldn’t necessarily prevent its return, Sommer made up his mind. He would put his life in his own hands, quite literally, by spearheading the search for a cure.

When the aspiring environmental engineer from Greensboro started looking for chordoma research labs to approach, he made a serendipitous discovery. The only federally funded chordoma research study in the United States was happening right in his backyard, conducted at Duke by oncologist Michael Kelley.

In studying what it would take to accelerate research on chordoma treatments, Sommer says, it soon became clear that “the challenge we were facing was an engineering problem.” He and his supporters needed to understand the complex system of incentives, investment and medical knowledge that results in the creation of new cancer treatments – and then pull the right levers to run it in their favor.

Do your homework

Since founding the Durham-based Chordoma Foundation with his mother in 2007, Sommer has learned to navigate the system remarkably well. Now 26, he’s been named to the Forbes 30 Under 30 list of emerging leaders and was chosen from a very competitive pool of social entrepreneurs to become an Echoing Green Fellow. Last year, his foundation raised $1.6 million in contributions – double the amount from the previous year.

Sommer and his team have found success by diligently following a few key principles, which amount to a playbook for spurring change from the ground up in any sector.

First, do your homework. After his surgery, Sommer began volunteering in Kelley’s lab. He loaded up on science classes to better understand cancer at a cellular level. He talked with researchers and patients to gain grass-roots knowledge of the obstacles impeding chordoma drug treatments. Only then, after more than a year in the trenches, did he launch the Chordoma Foundation, ultimately withdrawing from Duke after his junior year to become its executive director.

Second, make an offer they can’t refuse. Sommer notes that his foundation does not simply approach funders and say, “We’re doing good work; please give us money.” Nor does it tell scientists, “We really need your help with research.” Instead, Sommer’s team focuses hard on what motivates potential partners, how they are measured and rewarded, and how working with the Chordoma Foundation aligns with their own interests.

Widespread collaboration

For example, to speed up the development of cancer cell lines that chordoma researchers desperately need, the foundation advertised a prize internationally. It was the first time such an award had ever been offered for cancer cell lines of any kind, and two researchers in Austria and Germany have received $10,000 awards for their successful efforts. This innovative approach was spotlighted by The Wall Street Journal and is now being replicated by a handful of other foundations combating rare cancers.

Finally, build a village. The Chordoma Foundation thrives on widespread collaboration. It has created a “biobank” that collects chordoma tumor tissue for researchers, working with dozens of patients and numerous hospitals across the country. The foundation has partnered with the National Institutes of Health to test all FDA-approved drugs for the potential to combat chordoma, identifying 40 that merit further research. Clinical testing of the most promising drugs will begin soon. In the meantime, the foundation’s investment in the Chordoma Genome Project helped uncover a genetic variation that greatly increases the likelihood of developing chordoma and points toward possible treatments.

Sommer himself remains cancer free more than seven years after his diagnosis. But his urgency to find a cure has only grown as he has befriended chordoma survivors across the country, too many of whom have suffered recurrences. “This is not an abstract cause,” he says. “This is truly life and death.”

Christopher Gergen is CEO of Forward Impact, a fellow in Innovation and Entrepreneurship at Duke University, and author of “Life Entrepreneurs: Ordinary People Creating Extraordinary Lives.” Stephen Martin, a director at the nonprofit Center for Creative Leadership, blogs at www.messyquest.com. They can be reached at authors@bullcityforward.org and followed on Twitter through @cgergen.

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