Chordoma Foundation

Survivor teams with fellow cyclists to raise funds for foundation

Chris Kuhn uncommon chordoma story

Chris Kuhn BikeFor most of his life, Chris Kuhn wasn’t a cyclist. At age 38, he still preferred distance running, hockey, and golf. But after a chordoma diagnosis in 2004 resulted in several surgeries on his lumbar spine, his body no longer reacted well to his favorite sports. Craving a new way to stay active and fit, Chris found that bicycling fit the bill, and he and a friend soon started Not Dead Yet, a group of cycling buddies who get together regularly for fun and fundraising. About half of the guys in the group are cancer survivors.

In 2005, Chris and his Not Dead Yet mates held their inaugural fundraising event: a 25-mile bike ride along the shores of Casco Bay north of Portland, Maine, followed by a lobster bake for family and friends. Even a Nor’easter storm that day couldn’t stop them from celebrating another year of life. Through that event and subsequent fundraisers, the group has raised tens of thousands of dollars for the Livestrong Foundation and the Cancer Community Center in Portland, Maine.

In 2013, Chris and his cycling group decided to raise funds for the Chordoma Foundation. On September 13, 2013, they held the inaugural Climbing Cadillac, Conquering Chordoma ride on Mount Desert Island, a beautiful national park in Maine.

“That morning, 13 of us rode to the top of Cadillac Mountain, the first part of the continental United States to see the sunrise. For us, it was a symbol of hope. Through this event, we were able to raise nearly $16,000 for the Chordoma Foundation, and we were able to educate many people who didn’t know about chordoma as well,” Chris says proudly.

As the only group member to have battled chordoma, Chris felt particularly gratified that his friends chose the Chordoma Foundation to support. “The Foundation has gotten some terrific science going, and a little bit of money matters an awful lot to this organization. We hope these funds will be used to advance chordoma research, and perhaps to help connect some promising work being done in Maine with some other studies being supported by the Foundation.”

Chris Kuhn and FamilyChris, an interventional radiologist and married father of two, has been living well with chordoma since 2005, although he did have some residual tumor and underwent an additional course of radiation this summer.

“When you get the diagnosis, it’s crazy,” he says. “Unlike with many other cancers, there really hasn’t been any data on chordoma, and we’re just starting to understand what treatments do and don’t work. There are a lot of people with this disease who really need an organization like the Chordoma Foundation pulling for them. I hope that, as a result of supporting the Foundation, it will be easier for the next people who are diagnosed.”

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