Behind Noah’s incandescent smile was a painful journey: when he was just 20 months old, he was diagnosed with chordoma, an extremely rare cancer that’s even more rare among kids. Continue reading
It was a sunny Easter in Chicago this year, but Mick and Noreen Potempa had another reason to feel warm at their family egg hunt: For the first time since the start of the pandemic, the newly vaccinated couple enjoyed a holiday with four of their grandchildren. Continue reading
Jeff Schilling never expected to be the kind of person who openly shared his experiences with cancer, and he certainly never planned to do it in front of an entire bowling alley full of people.
When Jeff was first diagnosed with chordoma 18 years ago, he didn’t even want to talk about it. At 25 years old, he wasn’t about to let the fact that he had a rare cancer define him or change how people saw him. Continue reading
When Kenny Brighton joined the Chordoma Foundation in 2019, his off hours were spent in training mode: preparing for a race involving 10 Ironman triathlons in 10 days. Then came the pandemic; race cancellations followed. Rather than let his preparation go to waste, Kenny decided to pivot, taking the event into his own hands — and legs. As we speak, he’s in the midst of a one-man “Ironman x 10” in the balmy Florida beach town where he grew up. Over 10 consecutive days, he’ll run, bike, and swim a mind-blowing total of 1,400 miles. Continue reading
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.” Continue reading
Adaptability is a skill we’ve all had to sharpen over the past year; life in a pandemic is anything but business as usual. But coming together to adjust to new conditions and accomplish the improbable is something we in the chordoma community know how to do. So even when COVID-19 put unprecedented roadblocks in the way, Chordoma Champions — individuals who rally their personal network to fundraise for the Foundation, directly supporting research and patient services — forged ahead. Our Champions broke through obstacles none of us could have expected with ingenuity and perseverance. Continue reading
When Michael Torrey was diagnosed with chordoma in 2004, he approached it with a builder’s perspective, systematically researching the landscape and assembling key players to construct the strongest and most supportive framework possible for tackling his rare disease. Continue reading
In the spring of 2019, John Mainey and his family gathered friends and supporters across multiple states for the Warriors Against Chordoma Golf Tournament and Hoops Challenge in Austin, Texas. Both events were held in celebration and memory of his son, Chuck, an athlete and sports fan who battled chordoma for 15 years before losing his life to the disease in 2014. Together, they raised an impressive $20,000 for chordoma research and patient care, an outcome that surprised and delighted the Maineys. Continue reading
Join us in going ALL IN for chordoma by making a gift of whatever you can contribute in these challenging times. Joel and Shari Beckman have gone ALL IN because they see a real chance of permanently changing the course of this disease. And they know that the tomorrows that will be gained as a result — for everyone affected by chordoma — are the most precious gift of all. Continue reading
Chordoma caregiver and fundraiser Noreen Potempa gave an inspiring talk at our Chordoma Community Conference at Northwestern Medicine in Chicago … Continue reading