When Renée Butler’s oldest son, Seth, was diagnosed with chordoma at age 13, “it was a difficult time for our family,” she recalls. “In the years that followed, the Chordoma Foundation has given him so much support as a survivor. I wanted to do something to say thank you.”
So Renée became a Chordoma Champion: an individual who rallies their personal network to fundraise for the Foundation. Champions speed the path to better treatments, better care, and better experiences for everyone affected by chordoma.
Speaking of speedy paths, Renée — an ultrarunner in her spare time — decided to run 100K (62.5 miles) to raise awareness and funds for the Foundation. She was inspired in part by Seth’s own fundraising campaign, Hike for Chordoma, in 2018. Because the pandemic led to most formal races being cancelled, Renée pivoted and created her own one-woman race. Three days before her 60th birthday, in the middle of winter, she ran a two-mile loop through her hilly neighborhood 32 times in a row. “I got tired, but I didn’t get bored. I just focused on one loop at a time,” she says.
Armed with a space heater, her husband John manned a refueling station in their driveway. As neighbors stopped by to chat with him about the race and learn about the Chordoma Foundation, they were inspired to write checks to supplement Renée’s online fundraising page.
Renée ran circles around her fundraising goal, bringing in 175% of what she’d hoped for at the outset. The thousands of dollars she raised are directly supporting chordoma research and patient services. “When you fundraise like this, you’re able to give the Foundation an amount that you couldn’t write a check for by yourself,” she says. “As a donor, that’s such a meaningful opportunity.”
(Adding to the ripple effect of her efforts, Renée’s run inspired two young neighborhood boys to later complete their own run-bike-scoot event to raise money for a local food bank.)
While Chordoma Champions can and do fundraise without leaving their sofas, some people choose to connect their campaign with a hobby like Renée did. “That way, you have nothing to lose, because you’re already doing something you enjoy,” she says. “Plus, as my husband pointed out: ‘You can’t just run 32 laps around the neighborhood without a good cause. People will think you’re crazy.’”
And because the only thing better than a Chordoma Champion is a returning Champion, Renée plans to repeat her race in June. “It’s easy, fulfilling, and so much fun,” she says. “You feel like you’re changing the world.”
Ways to help
We know chordoma is a solvable problem. How fast it gets solved depends on the contributions of every one of us affected: whether by donating, hosting a fundraiser, or participating in research. There are lots of opportunities for each of us affected by chordoma to fuel research advances that will dramatically improve treatments and outcomes.