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.

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

Todd Balf’s Complications: A book about recovery, setbacks, and, ultimately, hope

Aug 27 2020 by Chordoma Foundation Team

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

Ask the Experts Webinar: Recording now available

Aug 26 2020 by Chordoma Foundation Team

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

We need to continue progress against chordoma

Jul 31 2020 by Chordoma Foundation Team

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

Ask the Experts Webinar: Join us on August 20

Jul 22 2020 by Chordoma Foundation Team

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

2019 Annual Report: Going ALL IN

Jul 20 2020 by Chordoma Foundation Team

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

Going ALL IN – The Mainey’s Story

Apr 30 2020 by Chordoma Foundation Team

Before Chuck Mainey was diagnosed with chordoma in 1999, he and his family — like many affected — had never heard of it. … Continue reading

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

Apr 29 2020 by Chordoma Foundation Team

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

Chordoma Foundation