Chordoma Foundation

A momentous year for the chordoma community

Like a pebble making ripples in the water, you can see how small things grow. Friends who’ve been part of our chordoma journey over the past eight years have seen firsthand how many more options exist for patients now. They see in real time how their contributions are directly impacting progress. They see the future with better treatments ahead.

Noreen Potempa

spouse of chordoma patient Mick Potempa

As each year at the Chordoma Foundation expands into the next, this community helps us build on past progress to reach milestones that once seemed improbable. Today, we’d like to preview what your support is making possible in 2021.

Our plans for this year include pressing forward on a number of exciting scientific priorities, including — for the very first time — preclinical studies to test the efficacy of drug candidates that strike at brachyury, the Achilles’ heel of chordoma. We’re also making substantial headway in applying existing drugs and powerful new immunotherapy approaches to chordoma. And, at the same time, we’re increasing the breadth of information and support we provide to patients and families, particularly to help address the many quality of life challenges that often come with a chordoma diagnosis.

This progress is possible thanks to your consistent generosity. We’re now 97% of the way to our $16M ALL IN campaign goal, which is especially inspiring in light of tremendous collective challenges over the past year — not to mention an amount that’s nearly unprecedented in the rare disease world. Support has come from $100 Facebook fundraisers and extraordinary major gifts, from brand new friends and Chordoma Champions who’ve rallied their networks for us year after year. Each and every show of support adds up to better options and outcomes for those facing chordoma today, and we’re deeply proud of the progress you’re powering.

2021 Priorities

Chordoma is a solvable problem. Your support accelerates our focused quest for solutions. 

Brachyury drug discovery

Developing drugs that strike at the Achilles’ heel of chordoma

  1. The moment we’ve been waiting for: Begin first preclinical efficacy studies of emerging brachyury drug candidates (2-3 drugs)

  2. Begin studying safety of therapies targeting brachyury


Applying powerful new technologies to harness the immune system to fight chordoma

  1. Initiate and fund projects addressing top immunotherapy research priorities (2-3 projects)

Drug repurposing

Systematically identifying existing drugs that can help chordoma patients in the near term

  1. Complete testing of all approved drugs in chordoma cells

  2. Initiate and support new drug repurposing clinical trials (1 or more)

  3. Identify new treatment approaches that show strong preclinical efficacy to pave the way for future clinical trials (3 or more)

Patient experience

Helping patients and their families confidently take on health challenges and get the best care possible

  1. Start new virtual support groups for patients and caregivers
  2. Host virtual community conference series focused on addressing quality of life issues (5 webinars)
  3. Develop and translate educational materials addressing key questions identified by our community (5 topics)

Clinical learning

Understanding how different treatments impact patient outcomes to continually improve patient care

  1. Surpass 100 patients enrolled in the Natural History Study of Rare Solid Tumors

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