Chordoma Foundation

Latest Updates


What we’re learning from the Chordoma Survivorship Survey

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

Scientists achieve vital step on the path to drugging brachyury in chordoma

In recent years, researchers have identified chordoma’s Achilles’ heel: a protein called brachyury, which drives and sustains the cancer. To date, attacking brachyury has been an uphill battle. But new research has helped illuminate the path forward: with support from the Chordoma Foundation, scientists demonstrated that brachyury could be directly degraded and that doing so caused chordoma cells to stop growing. Continue reading

Living well: Caring for yourself during stressful times

Last November, as part of our work to help all of you who have been touched by chordoma live your best lives before, during, and after treatment, we hosted Living Well: Caring for yourself during stressful times, a 60-minute webinar outlining strategies and tips for self-care. If you weren’t able to join us for the webinar, we encourage you to read our blog post about the key takeaways and watch the recording. Continue reading

Help researchers learn more about chordoma and improve treatment options by participating in NCI’s Natural History Study

The chordoma community is one of a number of rare cancer communities that has been invited to participate in the Natural History Study of Rare Solid Tumors, currently underway at the U.S. National Cancer Institute (NCI). The purpose of this important study is to collect clinical and biologic information including tumor tissue samples from patients with rare solid tumors, such as chordoma, to understand better how these tumors develop and grow. Continue reading

Susie Rinehart’s Fierce Joy

Susie Rinehart has always been strong. She’s a mom, a leadership coach, an international girls’ empowerment advocate, and an ultrarunner. But beneath the veneer of confidence and success, she struggled with anxiety and depression, feelings she neither shared nor confronted until a diagnosis of chordoma forced her to reconsider what mattered most. Continue reading

Community fundraising in the age of COVID

In the spring of 2019, John Mainey and his family gathered friends and supporters across multiple states for the Warriors Against Chordoma Golf Tournament and Hoops Challenge in Austin, Texas. Both events were held in celebration and memory of his son, Chuck, an athlete and sports fan who battled chordoma for 15 years before losing his life to the disease in 2014. Together, they raised an impressive $20,000 for chordoma research and patient care, an outcome that surprised and delighted the Maineys. Continue reading

Becoming a Chordoma Foundation Peer Guide just got easier

Before she was diagnosed with chordoma, Susan Hall had never been hospitalized a day in her life. Fit and active, she initially took the pain in her tailbone to be a pinched nerve before an exploratory MRI uncovered a tumor “the size of a chubby caterpillar.” It was Labor Day weekend of 2016, and the time between learning she had a tumor on Friday and getting into the doctor’s office to have a biopsy on Tuesday felt like an eternity. When she learned the following week that she had a sacral chordoma, the news rocked Susan to her core. Continue reading



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