Join the 2021 Virtual Chordoma Community Conference Series
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
Author Archives: Chordoma Foundation Team
Could a blood test detect the presence of chordoma?
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
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
The quietly powerful gifts of Michael Torrey
Michael Torrey knows how to build things from the ground up. As the President of Avalon Construction Corporation, he’s spent 43 years creating custom homes that perfectly blend unique design and smart efficiency. So when he was diagnosed with chordoma in 2004, he approached it with a builder’s perspective, systematically researching the landscape and assembling key players to construct the strongest and most supportive framework possible for tackling his rare disease. 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
Announcing additions to our Board of Directors and advisory boards
As the Foundation continues to break new ground, particularly in the areas of new drug development and in survivorship, we’re thrilled to announce several additions to our Board of Directors and advisory boards intended to build strength in those areas. 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. In that moment, her entire life’s focus shifted from “What do I need to achieve?” to “How do I want to live?” From treatment through recovery she pondered this question, sharing her thoughts in letters to her children. Those letters evolved into blog posts and then a book, Fierce Joy. Published in 2019 as a #1 Amazon New Release, it is one survivor’s memoir about bravery, authenticity, and choosing joy over fear. 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