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
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
Join us in going ALL IN for chordoma by making a gift of whatever you can contribute in these challenging times. Joel and Shari Beckman have gone ALL IN because they see a real chance of permanently changing the course of this disease. And they know that the tomorrows that will be gained as a result — for everyone affected by chordoma — are the most precious gift of all. Continue reading
Do you have questions about chordoma and chordoma treatment that you’d like to ask chordoma experts? Join us for an Ask the Experts webinar! Continue reading
Our 2019 Annual Report details how a confluence of recent research advances have cleared a path to identify existing treatments that could help chordoma patients in the near-term, and, incredibly, created a line of sight to the first treatments that strike at the Achilles’ heel of chordoma. It also tells how many in our community have rallied behind our recently-launched $16M ALL IN campaign to bring these unprecedented research opportunities to fruition, while at the same time helping patients and families confront chordoma with confidence and get the best care possible along every step of their journey. Continue reading