By Todd Cohen
GREENSBORO, N.C. — Greensboro resident Josh Sommer, a junior at Duke University in Durham, is on an urgent mission, and the clock is ticking.
Diagnosed in May 2006 with chordoma, a rare bone malignancy that occurs along the spinal column, he is working full-time with his mother through a foundation they formed in February 2007 to spur better diagnosis and treatment of the disease, and ultimately a cure.
“Existing treatments are not acceptable,” he says, “so we decided to find other cures.”
The Chordoma Foundation, which in May co-hosted an international workshop on chordoma to develop a “roadmap” for future research, has raised $125,000 and is developing plans to raise $3 million over two years to launch a coordinated research effort.
To do that, the foundation has enlisted several new board members with expertise in fundraising, nonprofit organizations and scientific research.
With only 2,000 patients in the United States, including only 300 new patients a year, and an average survival rate of seven years, chordoma is an “orphan disease” that attracts little attention, research or funding, says Simone Sommer, Josh’s mother and a physician who is volunteering full-time as president of the foundation.
Josh says the foundation aims to quickly overcome big hurdles chordoma research faces, including a lack of communication and collaboration among researchers and scientists who often work in isolation and do not share information; a lack of access to tissue and cell lines needed for research, with most tumors currently thrown away after surgery; and a lack of funding in a competitive philanthropic marketplace in which diseases that affect the most people attract the most money.
The foundation also is working with a team of MBA students at the Fuqua School of Business at Duke to develop business, operating and financial strategies for the organization, including its plans to create a “biobank” to collect and oversee chordoma tissue and cell lines needed for research.
Heather Lee, a new member of the Chordoma Foundation’s board and the mother of a 12-year-old son diagnosed with chordoma five years ago, says that by connecting researchers and institutions working on a broad range of diseases, the foundation can build a “critical mass” that can attract greater funding and academic attention to chordoma.
Her son, Justin, is just beginning his fifth round of chemotherapy after four previous treatments failed.
“We just don’t know what will work,” says Lee. “There’s no research to reflect chemo and chordoma.”
The collaborative and coordinated research the foundation is fostering can show potential funders the benefit of expanding the focus of research beyond single types of cancer, says Lee, an associate professor of human resources at Peace College in Raleigh whose initial task at the foundation will be to develop plans for building its organizational infrastructure and a strategy for raising money.
“The scientists want the biggest bang for the buck, and so of course going for the big cancers that affect the most people logically makes the most sense and has the biggest benefit for the public,” she says. “And yet there are many cancers like this one that affect a much smaller number of people, and the only way we can save the lives of people impacted by these orphan cancers is to collaborate.”
The foundation already has connected researchers: In May, it teamed up with several institutes at the National Institutes of Health it had enlisted to co-host the First International Chordoma Research Workshop, bringing together 53 leading researchers and physicians from around the world to develop a “roadmap” for chordoma research.
Growing out of that effort, which identified gaps in knowledge on chordoma and developed a plan for filling them, has been a clinical trial at Memorial Sloan Kettering Cancer Center in New York City for 20 chordoma patients with metastatic disease, the second U.S. clinical trial ever for chordoma patients.
With scarce resources, Lee says, potential funders will recognize that “collaboration is the only way to have the greatest effect with your dollars.”