Chordoma Foundation

You can’t let a disease run your life

Schilling uncommon chordoma story

Jeff Schilling Profile PictureJeff Schilling credits his wife, Erin, for the philosophy he lives by. “She always drums it into my head that you can’t let a disease run your life. You never know what tomorrow is going to bring. There could be a cure for chordoma. There could be a drug for chordoma. There could be anything for chordoma that gives you a different life outlook than what they’re saying today.”

It’s a philosophy that has served the Kansas City, Missouri couple well in the years since he was first diagnosed with chordoma in 2003 at the age of 25. That positive outlook is what led them to move forward with their plans for a family despite multiple surgeries and other therapies for the original occurrence and recurrences in 2007, 2010, and 2013. The Schillings now have three beautiful daughters.

Throughout Jeff’s treatments at Loyola, Massachusetts General, and the University Pittsburgh, Jeff and Erin’s close friends and family wanted to know how they could help – and they were eager to raise funds to help find a cure for the disease Jeff was battling.

For a while, Jeff said, he wasn’t ready to stand in front of a group of people and proclaim “I have cancer.” But in 2008 he mustered his courage, and with the support of six couples, the Schillings co-hosted a bowl-a-thon, raffle, and silent auction for nearly 150 participants. The event proved so successful that it has been held annually each August (with a timeout in 2014 as Jeff was undergoing treatment) and has raised more than $70,000 in support for the Chordoma Foundation.

More friends have stepped forward to co-host fundraising events. In July 2013, Jeff and a college buddy teamed up to start an annual golf tournament in Kansas City that raised thousands of dollars for the Chordoma Foundation and the Leukemia & Lymphoma Society. And in November 2013, a high school friend hosted a fundraising dinner at his sushi restaurant in Jeff’s suburban Chicago hometown, where 130 diners contributed $8,000 to advance CF’s work. That, too, became an annual event.

How does the full-time IT professional, devoted husband, and father of three little girls find time to organize all of these fundraisers? “Luckily I have a lot of friends who help me, and when we divvy up the responsibilities it’s a lot easier than you’d think,” he shared.

One strategy that has worked well: “To make these events successful, we ask individuals who have different groups of friends to reach out to those groups. By branching out in that way, we’re able to fill the bowling alley every year.”

Most importantly, Jeff says he knows it’s worth the effort. “I always tell people I meet through the Foundation, ‘Get out there and help raise money. The money you raise goes to finding a cure for something that affects your life.’”

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