Chordoma survivor Ed Les and friends
An uncommon level of commitment from many in the chordoma community has always been the key driver of progress in the fight against this disease. Today, there are numerous opportunities for every one of us affected by chordoma to build on extraordinary recent momentum and contribute to additional milestones: like new clinical trials, immunotherapy development, and the discovery of the first drugs against chordoma’s Achilles’ heel, brachyury.
Five ways to power progress

Research advances

Results from brachyury vaccine trials

Findings have been released from three clinical trials testing therapeutic vaccines against brachyury. Here’s what we learned — and where we’re headed next.

Treatment and support

New clinical trials

We just added three new studies to our Clinical Trials Catalogue: the next-generation brachyury vaccine, a drug to inhibit a protein called CDK9, and a non-treatment trial providing genomic profiling to assess whether patients benefit from treatment guided by such testing.

How to deal with fatigue

Cancer-related fatigue is a common side effect for chordoma patients and survivors. Learn about fatigue and ways to manage it by joining us for a webinar on June 2 or reading about it on the new fatigue page on our website.

Survivorship resources galore

We’re continuing to add to the survivorship resources on our site — most recently, a guide to survivorship care plans. And now you can find all of our relevant materials under a new survivorship menu at the top of our home page. Survivors and co-survivors are encouraged to take our survey (last chance!) so we can keep the most helpful content coming.

Taking action 

Chordoma patient Jeff Schilling and friends

Finding connection in unexpected places

Chordoma patient Jeff Schilling and friends hoped they could make a dent in our quest for better treatments and improved patient support. They were right.

Couple's email sparks 45,000 reasons for hope

Despite the pandemic and a chordoma recurrence, Mick and Noreen Potempa doubled down on their commitment to advancing research. Their remarkably simple effort raised tens of thousands of dollars to power progress for this disease.

Give back as a Peer Guide

Calling all good listeners: Become a Peer Guide to provide hope and comfort to those affected by chordoma. We provide easy virtual training; you provide patients and family the opportunity to connect with someone who understands what they’re going through.

Volunteer on our Finance Committee

We have an opening for a Finance Committee volunteer. If you have accounting or financial management experience, we invite you to help us ensure the continued financial health of the Foundation. Contact to learn more. 


No matter where you are on your journey with chordoma, your role in that journey, or your location in the world, we're here to help.

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