Chordoma Foundation

Author Archives: Chordoma Foundation Team


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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2019 Annual Report: Going ALL IN

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

Chordoma community invited to participate in the Natural History Study of Rare Solid Tumors

The ongoing challenges presented by the COVID-19 pandemic have interrupted and altered medical research across the globe. While some scientists have had to halt their studies abruptly, others can forge ahead thanks to virtual options. The chordoma community is one of many rare disease communities invited to participate in one such study, the Natural History Study of Rare Solid Tumors, currently underway at the National Cancer Institute (NCI). Continue reading



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