Category Archives: Uncommon Stories
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
Chordoma doesn’t just affect the individuals diagnosed; it also affects their loved ones. If you offer the crucial emotional, physical, financial, or spiritual support that someone with chordoma needs, you are a co-survivor. 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
Susie Rinehart has always been strong. She’s a mom, a leadership coach, an international girls’ empowerment advocate, and an ultrarunner. But beneath the veneer of confidence and success, she struggled with anxiety and depression, feelings she neither shared nor confronted until a diagnosis of chordoma forced her to reconsider what mattered most. Continue reading
Todd Balf doesn’t think of himself as a survivor. He is, by his own description, a “quote-unquote regular guy” who has been through an extraordinary set of circumstances. You can read Todd’s story in his new book, Complications published in July as part of a new Scribd Original series of audio and ebooks. Continue reading
Before Chuck Mainey was diagnosed with chordoma in 1999, he and his family — like many affected — had never heard of it. … Continue reading
Chordoma caregiver and fundraiser Noreen Potempa gave an inspiring talk at our Chordoma Community Conference at Northwestern Medicine in Chicago … Continue reading
