Chordoma Foundation

Latest Updates


Meet the new team members catalyzing chordoma research progress

For more than three decades, internationally renowned neurosurgeon Dr. Chandra Sen, the Bergman Family Professor of Skull Base Surgery at NYU Langone Health, has provided expert surgical care to patients with chordoma and other skull base tumors. Now, Dr. Sen – a longtime member of the Chordoma Foundation’s Medical Advisory Board – has assembled a team of researchers at NYU Langone to join him in a new initiative to advance chordoma science. Continue reading

2021 Virtual Chordoma Community Conference: Dealing with cancer-related fatigue

On June 2, we hosted the second webinar in our 2021 Virtual Chordoma Community Conference (CCC) Series: entitled Dealing with cancer-related fatigue. Fatigue is an extreme feeling of tiredness or lack of energy not caused by a specific activity, and it is one of the most common side effects of cancer treatment. From responses to our ongoing Chordoma Survivorship Survey, we know that nearly 60 percent of chordoma patients and survivors have experienced fatigue since being treated. Continue reading

An unexpected champion: Jeff Schilling’s story

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

Iron-maniac: Chordoma Champion racing 10 Ironman triathlons in 10 days

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

NYU launches ambitious new chordoma research program thanks to patient philanthropy

For more than three decades, internationally renowned neurosurgeon Dr. Chandra Sen, the Bergman Family Professor of Skull Base Surgery at NYU Langone Health, has provided expert surgical care to patients with chordoma and other skull base tumors. Now, Dr. Sen – a longtime member of the Chordoma Foundation’s Medical Advisory Board – has assembled a team of researchers at NYU Langone to join him in a new initiative to advance chordoma science. Continue reading



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