Author Archives: Chordoma Foundation Team

The Chordoma Foundation works to improve the lives of those affected by chordoma - a rare and tenacious bone cancer - and is leading the search for a cure. Started in 2007 by patients and families determined to create a better future for those affected by this devastating disease, the Foundation offers a suite of services to help patients get appropriate treatment, overcome practical challenges, and get emotional support. To advance the search for a cure, the Foundation strategically initiates and funds research, facilitates communication and collaboration among researchers and drug companies, and supplies the research community with critical biological resources.

NYU launches ambitious new chordoma research program thanks to patient philanthropy

Apr 26 2021 by Chordoma Foundation Team

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

Experiencing survivorship from the co-survivor’s perspective

Apr 22 2021 by Chordoma Foundation Team

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

New grant will support chordoma immunotherapy research at Johns Hopkins Medicine

Apr 15 2021 by Chordoma Foundation Team

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

Mom of chordoma survivor runs one-woman ultrarace to raise money for research

Apr 14 2021 by Chordoma Foundation Team

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

2021 Virtual Chordoma Community Conference: Options for comprehensive pain management

Apr 13 2021 by Chordoma Foundation Team

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

Apr 08 2021 by Chordoma Foundation Team

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

Apr 06 2021 by Chordoma Foundation Team

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

Mar 10 2021 by Chordoma Foundation Team

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

Join the 2021 Virtual Chordoma Community Conference Series

Feb 25 2021 by Chordoma Foundation Team

In 2021, we are excited to host a Virtual Chordoma Community Conference (CCC) Series featuring webinars about some of the most common quality of life challenges you face. Continue reading

Could a blood test detect the presence of chordoma?

Feb 24 2021 by Chordoma Foundation Team

Determining whether a chordoma tumor is responding to treatment – or if the disease has recurred – is a pressing challenge for patients and their care teams. Current techniques are imperfect: imaging can be impeded by surgical scarring and hardware, for example, and small recurrences or metastases may go undetected until they are large enough to show up on scans. Continue reading

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