The good moments will come again: José Enrique’s Uncommon Story
“You have bad moments in life, and good moments in life. The good moments will come again. It may be your turn to be unlucky, but you can get to the other side.” Continue reading
Category Archives: Latest Updates
Addressing physical challenges associated with sacral chordoma: Bladder function
Sacral chordoma patients often experience side effects that impact the critical functions in the pelvis, including bowel, bladder, and sexual. While these functions are critical to the quality of every person’s life and health, they often aren’t discussed publicly. Our intent with these blog posts is to take the embarrassment out of these discussions and address real questions from real chordoma patients in a candid, direct and — we believe — helpful and hopeful manner. Continue reading
A new chapter for chordoma research
This year has been by far the most pivotal yet for the Foundation, and we want to take a moment to reflect on what our supporters have helped us accomplish, as well as to share a big next step for us in the coming year. Continue reading
How drug repurposing is paving the way for better chordoma treatments
The fastest path to better treatment options in the near-term for patients in need is through existing drugs. Our Drug Repurposing Initiative is systematically identifying these treatment options, with the goal of rapidly initiating new, well-justified chordoma clinical trials. Continue reading
Three paths toward major advances for chordoma patients
Thanks to the generosity of our supporters, significant advances for chordoma patients are being made along multiple paths. Continue reading
Enrollment open for new chordoma clinical trial
Chordoma patients with advanced or metastatic chordoma may soon be eligible to enroll in a new clinical trial testing the FDA-approved cancer drug cetuximab. Continue reading
Exciting progress, and much more to come: Watch our 2021 Impact Update webinar
Our Executive Director, Josh Sommer, hosted a webinar to highlight recent advancements in chordoma research and improvements in the patient experience, as well as the many exciting opportunities now in front of us. Continue reading
2021 Virtual Chordoma Community Conference: Coping with anxiety, depression, and grief
During the webinar, Jennifer Bires, LCSW, OSW-C, Executive Director of Life with Cancer and Patient Experience at Inova Schar Cancer Institute, and Megan Whetstone, LCSW, an oncology social worker with the Kelsey-Seybold Cancer Center, discussed: common mental health challenges experienced by cancer survivors and co-survivors, ways to manage and cope with these challenges, what type of support is available, and how to get help for yourself or your loved one.
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New progress toward personalized treatment for chordoma
Researchers have identified two molecular subtypes of chordoma associated with different prognoses. They also found that the subtypes can be detected through blood samples, suggesting that someday chordoma diagnosis and prognosis could be determined without biopsy or surgery. Continue reading
2021 Virtual Chordoma Community Conference: Improving balance, strength, and mobility after treatment
During this one-hour webinar, Lisa Ruppert, MD, a physiatrist and cancer rehabilitation expert at Memorial Sloan Kettering Cancer Center, and Justin Brown, MD, a reconstructive neurosurgeon at Massachusetts General Hospital’s Paralysis Center talked about the causes and symptoms of mobility issues in chordoma and how to manage them. Continue reading