Update from the Chordoma Foundation - March 2016

Grant to Memorial Sloan Kettering seeks to identify new drug targets for chordoma 

We are pleased to announce our latest investment in research to identify new therapeutic targets for chordoma: a $100,000 grant to help researchers at Memorial Sloan Kettering Cancer Center uncover genes that chordoma depends on for survival. Led by Dr. Cameron Brennan, the studies could reveal new opportunities to attack chordoma and pave the way for new treatment options. This project complements the Foundation’s recent target discovery partnership with the Broad Institute of Harvard and MIT, providing both groups with a way to independently validate their results and move forward more quickly on newly discovered drug targets.
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Join us at our International Chordoma Community Conference this July

Registration is now open for the International Chordoma Community Conference this summer in Boston. The conference will begin with a special dinner on Friday, July 15, where leading doctors and researchers attending the concurrent 2016 International Chordoma Research Workshop will join the patient community. The next day, attendees will have the unique opportunity to learn from members of the Foundation’s Medical and Scientific Advisory Boards and ask questions about the latest treatment options and research. Saturday’s sessions will also include information on supportive care, clinical trials, and integrative medicine.

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We’re halfway to funding two new clinical trials!

Thanks to the generosity of the chordoma community and a dollar-for-dollar matching gift from the family of a 17-year chordoma survivor, we’ve surpassed the $300,000 needed to fund one of two clinical trials we are planning to support in 2016. Both trials have been endorsed by the Foundation’s Medical and Scientific Advisory Boards and represent promising opportunities to find a new treatment option for patients with recurrent or advanced disease. These trials are the culmination of what our research efforts have been building towards for the past eight years, and we are so grateful to everyone who has helped us get to this point!

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Helpful readings to address common patient challenges

Traveling for treatment: This article from CURE magazine outlines the financial, emotional, and practical considerations to take into account when deciding to travel for cancer treatment.
Financial assistance: Our website has a list of organizations that can help lessen the financial burden chordoma can create.
Combatting fatigue: This article from The Huffington Post lists common symptoms of fatigue and explains integrative therapies that may help combat it.

Special offer for chordoma patients extended

A special offer is available to chordoma patients looking for a way to keep track of complicated medical records. PicnicHealth is a service that some patients have found helpful. It collects and electronically stores patients’ medical records, lab results, doctors’ notes, and CT or MRI images in a secure online platform. Their team works with healthcare providers to obtain the medical records and then creates a comprehensive health timeline that can be easily shared with new physicians on the patient’s behalf. Patients have found services like PicnicHealth helpful for organizing extensive records, understanding details of their own medical history, and sharing information when seeking second opinions or meeting with a new doctor.


Third annual half marathon fundraiser

Team captain Steve Mandel and a team of more than 30 runners will tackle the Brooklyn Half Marathon on May 21 as part of the Third Annual Half Marathon Fundraiser to support CF. With just under two months to go, the team is half-way to their fundraising goal. Want to help? Donate here to help them reach the $50,000 mark.


Clinical trial available for patients planning 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.


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