Chordoma Foundation

Author Archives: Chordoma Foundation Team


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. 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

Turning vision into action through empowered philanthropy: Get to know Kenny Brighton

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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