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Sue Johnson


As Sue Johnson contemplated how to mark her three-year cancer-free anniversary, she was pragmatic. The chordoma survivor and married mother of three knew she wanted to raise money for chordoma research, but chronic back pain meant she was unable to run or walk one of those common fundraising events.

“I can swim!” Sue realized … and a fundraiser was born. Sue asked friends and family to sponsor her as she swam 1,000 laps – about 33 miles – at her local pool in the suburbs of Washington, DC. The Army veteran even started a blog ( so supporters could track her progress. She swims five days a week, and completed the last lap on December 16th, 2011, the third anniversary of her surgery to remove the chordoma tumor from her lumbar spine. Sue’s goal was to raise three dollars per lap, for a total of $3,000 to go toward research through the Chordoma Foundation. She exceeded her goal and raised more than $3,200.

Sue first learned about the Chordoma Foundation after her doctor raised the possibility that the tumor in her lower back might be a chordoma. After several weeks of tests, that possibility became a reality. Sue, who lived in Washington State, went to M.D. Anderson Cancer Center in Texas for treatment. Eventually, when her family moved to the East Coast, she was able to attend CF’s annual Chordoma Community Conference.

“Going to the conference was sobering, but at the same time very uplifting and positive. It really solidified my desire to be involved with the Foundation,” Sue recalls. “I met doctors and researchers, and learned how important information-sharing and collaboration is to making quicker progress in the treatment of chordoma and other cancers. And as someone who had never been involved in fundraising before, it was really interesting to see where your money goes when you donate. That’s why I decided to put myself out there and raise money for the research that the Foundation supports. Otherwise, I figured, it was a waste of a life experience. Besides, I felt like I might explode if I didn’t try to do something for further the cause!”

Tell us your Uncommon Story

Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.

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