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A new chapter for chordoma research

This year has been by far the most pivotal yet for the Foundation.


From our Executive Director, Josh Sommer:

For me, the end of 2021 is quite a meaningful time: it marks a little over 15 years since setting off down the path to tackle chordoma. To say I feel lucky to be here all these years later in good health with a family I adore, truly awesome colleagues, and this remarkable community by my side would be a huge understatement.

This year has been by far the most pivotal yet for the Foundation, and I want to take a moment to reflect on what our supporters have helped us accomplish, as well as to share a big next step for us in the coming year.

A quick recap of key highlights from 2021:

All of this (and more) has been truly energizing, and paves the way for even more significant things to come.

But the excitement is also mixed with sadness and impatience seeing several friends face recurrences or battle progressing disease. I’m grateful that research is moving much faster now than it was 15 years ago and that better treatments are in sight, but it’s not enough. For everyone facing the threat of advanced disease, we need to go faster.

Which brings me to what’s coming up in the year ahead.

There is undoubtedly much more progress that could be made simply with more funding, and we need to continue investing in high impact research to find existing drugs that could be repurposed for chordoma, to apply immunotherapy advances to this disease, and to push brachyury drugs to the clinic. But to actually discover new treatments at a pace that matches our sense of urgency, it’s become increasingly clear to us that fundamentally new capabilities are needed to enable certain important research that can’t easily or efficiently be done in academic or industry settings.

Our Drug Screening Program was a key first step towards meeting that need by enabling any researcher or company to test promising drugs in cell and mouse models at a fraction of the time and cost of doing it themselves (to date, >65 drugs have been tested on behalf of dozens of collaborators, providing rationale for four ongoing trials, one being planned, and more likely soon).

Now we’re on the verge of taking the next big step in accelerating research: In 2022, we’ll launch our own lab 100% dedicated to chordoma. The lab will give us the ability to perform a wide range of experiments critical to translational research and drug discovery. It will allow us to more quickly and efficiently follow up on certain findings from grantees or collaborators than is usually possible today, to conduct experiments on behalf of partners that they can’t easily do themselves, and to more nimbly pursue internally generated hypotheses. The idea is to allow our academic and industry partners to focus on what they are uniquely suited to do, while our central lab specializes in bridging common gaps along the process of rigorously evaluating therapeutic concepts.

The lab will be located in the Research Triangle of North Carolina and directed by Dr. Dan Freed, our Head of Target Discovery and Translational Research. To get started, we have rented a fully equipped lab bench at BioLabs in Durham, and just hired our first full-time lab position.

To a great extent, we are inspired and guided by the success of the Cystic Fibrosis Foundation Therapeutics Lab and the ALS Therapy Development Institute, which have already demonstrated an impressive ability to catalyze therapeutic development for their respective diseases with their own research labs. To our knowledge, however, ours will be the first lab of its kind for any form of cancer. We’re excited about the possibilities it will create to more rapidly translate biologic insights into new treatments for chordoma – and, based on the lessons we learn along the way, the case study it might provide for other cancers as well.

We’ll have much more to share when we begin work in the lab next year, and we look forward to keeping you posted as it comes to fruition.

Until then, sincere thanks from our whole team at the Foundation for being part of this quest.

Ways to help

We know chordoma is a solvable problem. How fast it gets solved depends on the contributions of every one of us affected: whether by donating, hosting a fundraiser, or participating in research. There are lots of opportunities for each of us affected by chordoma to fuel research advances that will dramatically improve treatments and outcomes.

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