Chordoma and Tumor Banking
CR Magazine: Collaberation – Results

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By Alanna Kennedy

Advocate Q&A: Tackling a Rare Cancer

A mother and son turned a chordoma diagnosis into a foundation

By Alanna Kennedy

Josh Sommer was a freshman at Duke University, in Durham, N.C., beginning his studies in engineering in 2006 when he developed intense headaches. He didn’t think much of it when his family doctor ordered an MRI, but when his mother brought the results to campus the day after his test, Sommer knew something was up.

Josh Sommer and his mother, SimoneFirst Sommer learned from his mother that his headaches were being caused by a tumor in his skull that was pressing against his brain stem. Then doctors told him the tumor was a rare bone cancer called chordoma. Diagnosed in only about 300 people in the United States each year, chordoma develops from the remnants of embryonic tissue and occurs on the spine or at the base of the skull.

For weeks, Sommer and his mother searched for a doctor and gathered opinions on the best way to treat his rare cancer. The news wasn’t good. Sommer needed surgery to remove the tumor, but there was little else doctors could do. This type of cancer is so uncommon, no drugs have been approved to treat it, and no clinical trials were taking place. More bad news followed: The median survival for chordoma is about seven years.

Where some might have walked away defeated, Sommer and his mother saw an opportunity to make a difference. Shortly after Sommer recovered from surgery, they founded the Chordoma Foundation. Now, at age 22, he serves as the executive director of the foundation, which is currently based in Greensboro, N.C. Recently, CR talked with Sommer about how he and his mother turned his diagnosis into a national organization.

CR: How did the Chordoma Foundation come to be?

Sommer: My mom and I researched everything we could and we found that there were very few scientists researching the disease. The only federally funded researcher was Michael J. Kelley, an oncologist at Duke. We met with him and talked about how we could jump-start the research process.

I began working in Kelley’s lab and saw how difficult it was to research such a rare disease. We didn’t have access to tumor samples and we didn’t know what other researchers were doing. We needed to build a community so researchers could collaborate and be on the same page.

CR: What are the biggest barriers to chordoma research?

Sommer: Access to high-quality chordoma tissue is the single biggest obstacle. Making tissue available to researchers will unlock a number of pending projects, and will entice researchers to consider new projects.

We’re in the process of setting up a chordoma tissue bank. We’ve signed a contract with Ohio State University in Columbus, are currently working on developing standard operating procedures, and are finalizing an institutional review board protocol.

CR: How does the Chordoma Foundation help patients and survivors?

Sommer: Patients can connect through our Chordoma Champions community. It’s a section of our website that enables chordoma patients to find others in their vicinity, to communicate with one another, to keep friends and family updated on their health status, and to raise money for the Chordoma Foundation. We’ve had two annual community conferences and each had over 100 participants.

CR: What advice do you have for others interested in starting their own foundation?

Sommer: Before starting a foundation make sure to do extensive due diligence to see if it’s possible to partner with an existing foundation—this could potentially save a lot of time, energy and hassle. If we had been able to partner with another organization, it would have saved us a lot of hard work.

Just about any problem or situation you’ll encounter will have already been encountered by other organizations. Don’t reinvent the wheel; there are many potential role models in the medical research space. Learn from the successes and failures of other groups.

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(photo: Courtesy of the Chordoma Foundation)