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
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
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 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
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
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
Our Head of Philanthropy, Kenny Brighton, was initially drawn to the Foundation through a personal experience with chordoma — the diagnosis, journey, and eventual loss of his uncle Mike, who fought a heroic battle with the disease for many years. He knows our community because he IS our community, and he shares our urgency for sound scientific solutions and reliable support for chordoma families.
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We are pleased to announce that the Chordoma Foundation and the Cancer Research Institute (CRI) have together awarded a $200,000 grant to a team of researchers at The University of Texas MD Anderson Cancer Center with the goal of creating the first cell based therapy for chordoma. Continue reading
Todd Balf doesn’t think of himself as a survivor. He is, by his own description, a “quote-unquote regular guy” who has been through an extraordinary set of circumstances. You can read Todd’s story in his new book, Complications published in July as part of a new Scribd Original series of audio and ebooks. Continue reading
During our recent Ask the Experts webinar, we were joined by a panel of chordoma experts who provided helpful and informative answers to questions from chordoma patients and their loved ones. We think you’ll find the information shared in the Ask the Experts webinar is a great resource. Continue reading