Update from the Chordoma Foundation - July 2017

New mouse models provide a valuable tool for chordoma drug development

Until recently, the lack of chordoma mouse models has been a major barrier to research and treatment development. But thanks to the incredible efforts of dedicated scientific partners such as Dr. Byron Hann of the University of California San Francisco (pictured above) and Dr. Michael Wick of South Texas Accelerated Research Therapeutics, we are well on our way to alleviating this impediment.
Prompted by a combination of Foundation-driven prizes and partnerships, talented cancer researchers like Drs. Hann and Wick have turned their attention to chordoma, resulting in an incredible 60 tumors being engrafted into mice, four (and counting!) of which have resulted in validated models, which are now available to the research community. These models are already being used to test the potential of new chordoma therapies and identify the most promising drugs to move into human clinical trials.

Read more about our growing mouse model repository and the researchers who have made it possible »


New clinical guidelines for recurrent chordoma

Recently published in the Annals of Oncology, this newest set of evidence-based treatment guidelines provides physicians, patients, and caregivers with clinical best practices for managing locally recurrent chordoma. Developed by a group of more than 60 international chordoma experts, these new recommendations fill a critical gap in the literature about what to do in the case of recurrence or progression after primary treatment. Together with the first-ever evidence-based guidelines for chordoma diagnosis and treatment, published in 2015, these guidelines help set the standard for optimal care of chordoma patients. 

Read more about the new clinical treatment guidelines for locally recurrent chordoma »

Help us shape a new online community forum

Whether you’re newly diagnosed or many years into the journey with chordoma, connecting with others who have shared a similar experience can provide encouragement, insight, validation, and support when you need it most. Currently, our Community Conferences and Peer Connect program help to facilitate valuable interactions between members of the chordoma community, as does the independent Chordoma Survivors group on Facebook. However, over the years we’ve heard from you that something more is needed.

To help meet this need, we will be launching a private, online forum that will make it easier to build connections with others across the chordoma community. In this safe, interactive environment you will be able to connect with patients and caregivers around the world, share your own knowledge and experiences, learn from the experiences of others, and much more. We are building this as a resource for everyone affected by chordoma, and we need your input to help make it useful to you. Please take ten minutes to tell us what you want in an online community by taking this brief, online survey.
Take the online community survey »

Meet our inaugural Patient Services Committee

In anticipation of continued growth and improvement of our Patient Services offerings, our Board of Directors has formed a Patient Services Committee, which will guide and oversee the important programs that serve the chordoma community. The inaugural committee is comprised of four accomplished professionals with collective experience in patient navigation, health education, social work, nursing, hospital administration, palliative care, and patient-centered outcomes research. The committee is chaired by our Board member Dr. Paula Song, a health policy researcher at the University of North Carolina at Chapel Hill.​

Read more about the committee and its members »


Don't forget to register for the upcoming Chordoma Community Conference at MD Anderson

Registration is filling up for the 2017 Chordoma Community Conference at The University of Texas MD Anderson Cancer Center! Join us for a day of learning as chordoma experts from MD Anderson share the latest updates in chordoma research and care. 

Community Conferences are a great opportunity to meet others who share similar experiences with chordoma, learn practical skills to manage your or your loved one’s disease, and get involved with a community working together to create a better future for everyone touched by chordoma. 

Reserve your spot now »


Becoming a Chordoma Champion is now easier than ever

We continue to be inspired by and grateful for everyone who raises money to fuel progress in chordoma research and care. You are champions! To make online fundraising easier than ever, we’ve launched a new Champion page platform that is modern, mobile-optimized, and social media integrated. Learn how to set up a Champion page to share your story and fundraise for the Foundation. Existing Champion pages will only remain available until the end of August, so you’ll want to get your new Champion page set up before then. We can’t wait to see what you create!​

Learn how to create or update your Chordoma Champion page »

Attend Chords for Chordoma

Join chordoma survivor Steven Golick, in Toronto, Canada on November 9, 2017, for a very special jazz concert benefiting chordoma research. Steven is hosting Chords for Chordoma to give back to the medical professionals who deal with chordoma and the patients and their families affected by it. The concert will be a rare opportunity to hear many of North America’s jazz masters on a single stage.​

Learn how you can sponsor and attend Chords for Chordoma »

Join the inaugural Climb for Chordoma

Ed Les and the Canadian Chordoma Network invite you to join their inaugural Climb for Chordoma on September 9, 2017 at Centennial Ridge in Alberta, Canada. The highest maintained trail in the Canadian Rockies, this 16 km round-trip hike rewards climbers with incredible panoramas and unusual rock formations. All funds raised will go to supporting chordoma research and programs to enhance chordoma care, under the direction of the Chordoma Foundation.

Learn how to participate in or support Climb for Chordoma »

Canadian taxpayers who contribute to Chords for Chordoma or Climb for Chordoma are eligible for a tax receipt through our partnership with the Canadian Cancer Society. 


Immunotherapy trial continues enrolling patients at Johns Hopkins

A phase 1 clinical trial studying the safety and initial effectiveness of the checkpoint inhibitor nivolumab with and without stereotactic radiosurgery is currently enrolling patients at Johns Hopkins Hospital in Baltimore, MD. This research study is designed specifically for chordoma patients whose tumors have come back in the same area or have spread to other parts of the body. Soon, patients will also be able to participate in this trial at Memorial Sloan Kettering in New York City.​

Learn more about the nivolumab clinical trial »

If you're considering this trial, the team at Johns Hopkins Hospital will need to review your medical history to determine if you are eligible to enroll. See the FAQ, “How do I find out if I’m eligible to participate?” for more specific information on eligibility requirements and the enrollment process.


Our Executive Director, Josh Sommer, was featured in a profile by the Duke Innovation and Entrepreneurship Initiative which touted the Foundation’s scientific momentum and philanthropic innovation.   ​

Read the profile »


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