April 2008

It Could Be Worse: Facing Chordoma

Author: Craig Hysell

Life needs perspective. Without perspective circumstances get out of hand quickly. People can get wrapped up in all the wrong sorts of details. Unfortunately levity is fickle, often leaving us when we need it the most.

So what happens when your world suddenly crumbles? Amidst war and relationship tribulations, recessions and tabloid journalism where does one find hope, inspiration and, above all things… a little perspective?

Sometimes, it’s in the last place you’d ever think to look. And it’s amazing how far the human spirit can take you.

Josh Sommers
For most people who go to college, the university experience is a time of experimentation, exploration and, if you can find the time between keg parties and sporting events, some higher learning. Needless to say this demographic isn’t usually referenced for enlightenment purposes by the general public.

Two years ago, prestigious Duke University was rocked by scandal when members of its highly successful lacrosse program were accused of rape. Amid socio-economic and racial tensions exploited in the media, the lacrosse program was suspended, the coach was fired, the case was being pursued by North Carolina District Attorney Mike Nifong and Duke was suddenly scrambling to convince the public they were still a reputable institution.

About that same time, Josh Sommers, then a freshman at Duke, was coming to terms with his own foundation-rattling news.

Josh is a bright young man, full of the potential and verve Americans have always held sacred, but seem to struggle celebrating these days. Named in the top-20 academic all-stars team by a national newspaper, Josh had his choice between MIT, Stanford and Duke. It was impossible for Josh to foresee, but his choice of colleges would have a greater impact on his life than he could possibly imagine.

After an MRI over Christmas for painful headaches, Simone, Josh’s mom, received a phone call explaining the results. The single mother made the drive up to Duke from Greensboro, NC, with Josh’s dog and, fighting back tears, told her son that he had a very rare form of cancer. The doctors needed to operate. If they were successful Josh would have about seven years to live.

About 300 people a year are diagnosed with chordoma, a relentless cancer which attacks the spinal column and is resistant to chemotherapy. Josh’s tumor had taken root inside his skull, extended to his brain stem and wrapped around several arteries. After two surgeries, Josh and his mother spent his weeks of recovery learning everything they could about chordoma. Which wasn’t much.

As one Associated Press writer puts it, “The massive apparatus of medical research… is utilitarian. High-prevalence diseases are at the front of the line; rare ones like chordoma are usually at the back.” But, a sliver of luck lay in this rubble of news. Michael Kelley, the only researcher in the country with a grant to study chordoma, happened to work at the VA hospital in Duke’s backyard. Josh volunteered to go to work for Kelley.

The student, with former hopes of an engineering degree, became an on-the-fly biologist, working to cure his own cancer. But the lab hours weren’t enough. Josh and Simone realized something else was missing. Researchers across the globe were fragmented, working on chordoma without an infrastructure that served as a collective communication base and fund-raising network. The process was too slow and time was of the essence.

In February, 2007, Josh and Simone set up The Chordoma Foundation. By that spring they had brought scientists from all over the world into the same room to talk about chordoma for the first time. Barely a year old now, the foundation strives to raise money, awareness and a proactive culture of researchers and resources.

It’s ironic, Mike Nifong, a man in a great position to help society, was disbarred for breaking more than two dozen rules of professional conduct—including perjury and withholding DNA evidence—in the Duke lacrosse case that would have immediately cleared the players of any wrongdoing. A young man, just 20 years-old, is on a quest to revolutionize cancer research in the hopes of living longer at the same institution smeared with hear-say scandal. And a rape that never happened received considerably more press.

Leadership, yet another ideal to which Americans still sacredly cling, can come from anywhere; maybe we’re just looking in the wrong places lately.

ChordomaFoundation.org is always looking for volunteers and donations. Josh is always looking for a way to win. “For me,” says Josh, “being here now has turned into a way to save my life and save the lives of lots of other people.”

That’s the kind of selfless perspective that needs to stick around.

The Chordoma Foundation is looking to raise $3M over the next few years.

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