Update from the Chordoma Foundation - July 2016

Research Workshop and Community Conference reflect tremendous momentum

Earlier this month, nearly 120 doctors and scientists from 11 countries and 56 institutions came together in Boston for the Fifth International Chordoma Research Workshop (ICRW) to share the latest data, exchange ideas, and forge the collaborations needed to advance the search for better treatments. The resounding take away: progress is reaching an exhilarating tempo.
Recently-developed cell lines and mouse models are enabling powerful new technologies to be applied to chordoma. More and more highly accomplished researchers and drug companies are starting to devote attention to chordoma. New vulnerabilities and potential therapeutic targets are being uncovered. And a growing pipeline of promising therapies are in, or headed towards, clinical trials.
In short, there is tremendous momentum in the field. Through vibrant discussion over the course of the two-day workshop, we were able to collectively advance the state of knowledge around chordoma, identify new research priorities, and lay the groundwork for even greater progress to come. To learn more about the ICRW and key outcomes see:

On the heels of the research workshop, the Chordoma Community Conference (CCC) brought together patients and family members to learn about the latest advances in chordoma research and treatment, develop new relationships, and work together to advance our collective mission to improve the lives of those affected by chordoma. It was our largest community conference yet, with over 120 participants joining from 5 countries and 21 states. Highlights included dinner with doctors and researchers participating in the ICRW, presentations on topics ranging from research advances to ensuring quality of life, and the always-popular Q&A with a panel of expert physicians. To learn more about the CCC see: 


Chordoma Foundation recognizes those making uncommon contributions to the cause

Thanks to the tireless dedication of chordoma researchers, and the donors, volunteers and champions within the chordoma patient community who make their work possible, together we are making tremendous progress towards better treatments for chordoma. Last week, as we gathered in Boston, the Chordoma Foundation recognized several of those individuals who have made truly remarkable contributions to propel the field forward with our Fourth Annual Uncommon Awards.

Read more about the 2016 uncommon award winners »

Voice of the chordoma community represented at Cancer Moonshot summit

Last month, Executive Director Josh Sommer was invited to participate in summit hosted by Vice President Biden to kick off the Cancer Moonshot Initiative – a national effort to accelerate the pace of progress in cancer research. The summit brought together government, nonprofit, and industry leaders to brainstorm and share ideas with the Vice President and the Cancer Moonshot team. Our participation provided an opportunity to put chordoma on the radar of policy makers, company executives, and regulators (including FDA oncology chief, Rick Pazdur, pictured left). Josh’s message: patients are central to accelerating research – not only must research be designed at every stage to meet the needs of patients, but proactive patient groups serve a unique and increasingly vital role in catalyzing the research and development process.
Read more about Josh’s experience and insights from the Cancer Moonshot »


Registration for the next regional Chordoma Community Conference now open

Mark your calendar to join us for the Chordoma Community Conference at Mayo Clinic in Rochester, Minnesota, on Saturday, October 15, 2016. Learn about the latest advances in chordoma treatment and research, and connect with peers from across the region and the world. 

Register today »


Pathologist pioneers chordoma research through collaboration

Last month, Adrienne Flanagan – a sarcoma pathologist based at the University College London – and colleagues from nine institutions in the US and Europe published a landmark paper providing strong evidence for EGFR inhibitors as a potential treatment approach for chordoma. Based on these findings, a clinical trial is being planned later this year. But this is just the latest in a string of impressive accomplishments in Dr. Flanagan's quest to uncover the mysteries of chordoma. It began with an unexpected finding in 2005 that led to “a light bulb moment” and a drive to find a way to stop this disease. We are grateful for all that she has done to move the field forward over the past decade and excited to tell her story as this month’s featured researcher.

Read Professor Flanagan’s featured researcher profile »


Clinical trial available for patients planning to have radiation

Researchers at the National Cancer Institute (NCI) are continuing to enroll patients in a phase 2 clinical trial to determine whether a type of cancer vaccine can improve the effectiveness of radiation for patients with localized chordoma. The vaccine is designed to stimulate the immune system to recognize and destroy tumor cells that produce a protein called brachyury, which is found at high levels in chordoma but not in normal tissue. Chordoma patients with inoperable or residual tumor who do not have metastases and are planning to be treated with radiation are eligible to participate. For more information about participating in this study, contact our Patient Navigator at or the senior study investigator at the NCI, Chris Heery.

Study seeks volunteers to help uncover the genetic basis of chordoma

For 20 years, scientists at the National Cancer Institute (NCI) have been conducting research to understand the genetic causes of chordoma. Their research has revealed that some cases of familial chordoma - rare instances of chordoma occurring in multiple members of the same family - are caused by inheriting an extra copy of a gene called brachyury, a finding that has sparked research into the role of brachyury in non-familial chordoma as well as other types of cancer. Now, they are seeking to determine whether other genes could also play a role in familial chordoma, and how changes in those genes may also contribute to the development of chordoma in individuals without a family history. If you are affected by chordoma – whether or not anyone else in your family has chordoma – you can help advance this research by participating in the NCI Chordoma Study. For more information about participating in this study, contact our Patient Navigator at or the senior study investigator at the NCI, Rose Yang


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