Author Archives: Chordoma Foundation Team

The Chordoma Foundation works to improve the lives of those affected by chordoma - a rare and tenacious bone cancer - and is leading the search for a cure. Started in 2007 by patients and families determined to create a better future for those affected by this devastating disease, the Foundation offers a suite of services to help patients get appropriate treatment, overcome practical challenges, and get emotional support. To advance the search for a cure, the Foundation strategically initiates and funds research, facilitates communication and collaboration among researchers and drug companies, and supplies the research community with critical biological resources.

Scientists achieve vital step on the path to drugging brachyury in chordoma

Feb 23 2021 by Chordoma Foundation Team

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

Feb 22 2021 by Chordoma Foundation Team

When Michael Torrey 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

Jan 27 2021 by Chordoma Foundation Team

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

Nov 09 2020 by Chordoma Foundation Team

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

Oct 29 2020 by Chordoma Foundation Team

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

Oct 27 2020 by Chordoma Foundation Team

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

Community fundraising in the age of COVID

Oct 07 2020 by Chordoma Foundation Team

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

Oct 01 2020 by Chordoma Foundation Team

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

Sep 15 2020 by Chordoma Foundation Team

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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Announcing a new grant to support development of the first cell based immunotherapy for chordoma

Aug 28 2020 by Chordoma Foundation Team

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

Chordoma Foundation