Chordoma Foundation

Latest Updates


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

New grant will support chordoma immunotherapy research at Johns Hopkins Medicine

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

2021 Virtual Chordoma Community Conference: Options for comprehensive pain management

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

New research investment to reveal chordoma subtypes, drivers of metastasis

The Chordoma Foundation is thrilled to have awarded two new $250,000 research grants aimed at generating a more complete picture of chordoma biology. The funds will support teams led by investigators at the University of Minnesota (U of M) and the German Cancer Research Center (DKFZ) and the National Center for Tumor Diseases (NCT) in Heidelberg, Germany, as they uncover drivers of chordoma metastasis and actionable differences in tumor subtypes, including tumors of different anatomic locations. Their findings are expected to uncover new therapeutic targets and inform personalized treatment strategies for chordoma patients. Continue reading

Chordoma fundraising in a virtual world

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

Radiation therapy for chordoma: More personalized decisions may be possible through tumor genetics

After having surgery to remove their tumor, most skull base chordoma patients also undergo radiation therapy. However, even in experienced centers, radiation can be associated with some long-term side effects. Thus, patients sometimes wonder if they could forgo radiation – particularly if no tumor remains after surgery. Now, new data could make the choice a little clearer for most patients with skull base chordoma. Researchers discovered that patients whose tumors have certain genetic markers might be able to refrain from radiation if surgery is successful in removing the entire tumor. Continue reading



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