Update from the Chordoma Foundation - April 2016

New Drug Screening Pipeline will streamline translational research

The accelerating pace of chordoma research has resulted in the discovery of an ever-increasing number of potential therapeutic targets and corresponding therapies that could hold promise for treating chordoma. However, until now, inefficiencies in the way preclinical research is typically done have made it time and cost intensive to advance many of those promising therapies toward clinical trials.

To help get better treatments to patients faster, we are excited to announce the launch of the Chordoma Foundation’s Drug Screening Pipeline, a centralized service that provides a fast and efficient way for researchers to test promising therapies in preclinical models of chordoma. In the coming year, we aim to complete testing of at least ten drugs. Positive results from any of these studies could provide rationale to pursue a clinical trial for chordoma patients. Going forward, as resources become available, more drugs will be tested, eventually creating a stream of preclinical proof-of-concept data to justify future clinical trials, and accelerating the translation of insights about chordoma into better treatments for chordoma patients.

Read more »

New patient resource distills expert recommendations for the diagnosis and treatment of chordoma

Getting the right treatment can make all the difference for chordoma patients. But making sense of medical information from various sources and coming up with the best treatment plan can be a daunting challenge. To ease this burden and help more patients get the best care possible, we’ve created a new educational booklet entitled Expert Recommendations for the Diagnosis and Treatment of Chordoma. It faithfully summarizes evidence-based recommendations published last year in the high-profile medical journal The Lancet Oncology by a group of more than 40 leading doctors who specialize in caring for chordoma patients. It also includes commentary from the Chordoma Foundation to help interpret and act upon the expert recommendations. Our hope is that this arms patients and caregivers with information and concepts needed to help make well-informed medical decisions.

Learn more about the booklet from our Patient Services Manager, Shannon Lozinsky»


Physician-scientist chooses career path in chordoma research

Dr. Youssef Yakkioui is a Dutch medical doctor and PhD candidate with a passion for uncovering chordoma’s many unanswered questions. With a grant from the Chordoma Foundation, Yakkioui has focused his graduate work on understanding the molecular underpinnings of chordoma. His work thus far has revealed patterns of protein expression that differentiate chordoma and could point to potential therapeutic targets. Looking ahead, Yakkioui intends to pursue a career that combines research with the surgical treatment of patients with skull base chordoma.

Read more »


Join us at the International Chordoma Community Conference (CCC)

The CCC is a unique opportunity to learn about the latest advances in chordoma treatment and research, to connect with fellow members of the chordoma community, and to take action to advance our shared goals. This year’s CCC is July 16 in Boston, with a special dinner on July 15 with doctors and researchers attending our International Chordoma Research Workshop. We hope you’ll join us for what will be an informative and inspiring event.​

Read more and register »


Run for Chordoma Brooklyn Half Marathon and after party

Chordoma survivor, Steve Mandel and a dedicated group of 30 friends are running their third half marathon to support the Chordoma Foundation – this time in Brooklyn. With $33,000 raised so far, they are well on their way to reach their goal this year of $50,000! You can help boost their fundraising efforts by contributing to their team or ordering an original Run for Chordoma Brooklyn Half Marathon performance shirt. They also invite fellow members of the chordoma community to celebrate with them during a reception on the evening of the race.


We’re hiring a Director of Development

Interested in a career that will accelerate chordoma research and help improve the lives of chordoma patients? We’re looking for a passionate and entrepreneurial Director of Development to lead the Chordoma Foundation’s fundraising program and to work with the chordoma community to achieve our shared vision for better treatments, better care, and a better experience for everyone affected by chordoma. If you are a fundraising professional who cares about chordoma, we want to hear from you. Please contact us or pass this position description along to others who may be interested.​

Read full job description and apply »

Message from our Board Chair

In a recent letter to the chordoma community, CF Board Chair Andrew Schoelkopf outlines the four ways we aim to increase our impact in 2016.

Read the full letter »


Clinical trial available for patients planning to have radiation

Researchers at the National Cancer Institute are recruiting patients planning to have radiation in the near future to participate in a clinical trial testing a new therapeutic vaccine in combination with radiation. Contact our Patient Navigator at to learn more.​​

Patients can advance research through our tumor donation program

Chordoma tumor tissue removed during surgery is vital for many types of research, but too often it is simply discarded.​ Through our Biobank, we can help patients ensure that their tissue is saved for research. If you are planning to have surgery and are interested in donating your excess tumor tissue, please contact our Manager of Research at to participate or learn more.


Copyright © 2016 Chordoma Foundation, All rights reserved.

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