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
An uncommon level of commitment from the chordoma patient community has been the key driver of new discoveries that are changing the outlook for this disease. There are numerous opportunities for each of us affected by chordoma to fuel research advances that will dramatically improve treatments and outcomes. 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
The year has started off with a feeling of great momentum at the Chordoma Foundation thanks to an outpouring of support for our recently-launched ALL IN campaign – including more than $3M in just the last few months. Continue reading
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
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
Immunotherapy is an approach that harnesses patients’ own immune systems to recognize and destroy their tumors. In recent years, it’s shown tremendous promise against several cancers. To ensure that chordoma patients benefit from these advances as well, investing in immunotherapy research is one of the Chordoma Foundation’s top priorities. Our newest immunotherapy grant will support a project to characterize the complex interactions between chordoma tumor cells and the immune system with the goal of identifying new treatment approaches for chordoma patients. 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
On April 7, we hosted the first webinar in this year’s Virtual Chordoma Community Conference (CCC) Series, entitled Options for Comprehensive Pain Management. We know from your responses to our ongoing Chordoma Survivorship Survey that most chordoma patients and survivors experience pain at some point along their journey with the disease and, for many, that pain can be chronic or long-lasting. But you don’t have to accept pain as a normal part of having chordoma. Pain can be managed, and it is your right to get treatment for it. Continue reading