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
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
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
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
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
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
Last year, as part of the Chordoma Survivorship Initiative, we called on you to tell us about the ways your life has been impacted by chordoma. Through the Chordoma Survivorship Survey we aim to capture the physical, emotional, social, and practical experiences of 1,000 or more of our community members—both survivors and co-survivors—to learn more about your needs during and after treatment, whether those needs are being met, and how we can help you live the fullest lives possible. Continue reading