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Junior leads charge against disease

When junior Josh Sommer was diagnosed with chordoma midway through his freshman year, he had never heard of the rare cancer. Now he is spearheading an international effort to find a cure.

Sommer, along with his mother, Dr. Simone Sommer, founded the Chordoma Foundation last February after their search for an organization dedicated to curing the disease proved fruitless.

"We were disappointed to find out that chordoma is a disease that falls through the medical cracks," Dr. Sommer said. "We needed to create an organization that bridges the gap between patients, researchers, care givers, government agencies and pharmaceutical companies working together to find a cure."

About 300 cases of chordoma are diagnosed in the United States each year, according to the Chordoma Foundation's Web site. The bone cancer can occur anywhere along the spine, and patients survive, on average, seven years after they are diagnosed.

The Chordoma Foundation has set ambitious fundraising targets. It hopes to raise $500,000 by April and $3 million by the end of 2009 to fund its goals, which include awarding research grants and creating a "biobank" of chordoma tumors and cell lines to increase the availability of such tissues to researchers.

In addition to seeking funding from traditional sources like the National Institutes of Health, the foundation is also collecting donations and spreading its message through Facebook.

The Chordoma Foundation has raised more than $8,000 using the Facebook Causes applications, which allows users to support registered nonprofits and invite their friends to do the same. The program awards $1,000 to the cause receiving the most unique donors each day-a prize won by the Chordoma Foundation on the day the program was unveiled.

Facebook will also donate amounts ranging from $10,000 to $50,000 for top-ranked causes over a roughly two-and-a-half month period ending Feb. 1, and the Chordoma Foundation is currently in the running for a $10,000 award.

A Web site has been set up at to direct visitors to the Facebook Causes program. As part of an effort to gather 500 new donors before the competition closes, the group will give away an Apple iPhone to one Duke student who donates before Friday at 3 p.m.

Sommer has also taken an active role in finding a cure.

"After the diagnosis, I started going through all the articles I could find and found Dr. [Michael] Kelley's work. He was the only researcher in the country with a grant to study chordoma," Sommer said.

Weeks later, he was searching for genes that cause the disease in Dr. Kelley's lab, working alongside the associate professor of oncology.

Once the responsible genes have been identified, the hope is that targeted treatments can be developed, Sommer said. Traditional chemotherapy and radiation treatments have proven less effective against chordoma than more common types of cancers.

Heather Lee, an associate professor of human resources at Peace College in Raleigh, serves as a volunteer member of the Chordoma Foundation's seven-person board. She brings extensive experience in consulting nonprofit organizations and a personal drive to find a cure for chordoma.

Lee, whose 12-year-old son is currently fighting the disease, said she joined the Chordoma Foundation because its founders were on a fast track and well-connected within the medical community. She was also impressed at the amount of detailed knowledge Sommer had amassed in the months following his diagnosis.

"Because of Josh, my family has hope that a cure may be found and my son could grow to adulthood, and honestly six months ago we didn't have that hope," she said.

Dr. Sommer said she is proud of her son and grateful to those who have helped the foundation.

"The support we've received from Duke has been phenomenal," she said. "We never imagined that when Josh came to Duke it would be a place not only to get a great education, but one that could also help save his life."


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