Chordoma Foundation

Turning pediatric chordoma into a curable disease

“Each milestone in Frankie’s life is a blessing, made possible by Chordoma Foundation research and modern medicine.”

– Frank, dad of pediatric chordoma survivor, Frankie, pictured above during treatment. Frankie started college in good health this month.

Rapid advances are being made against chordoma, and we’re focused on ensuring that the youngest members of our community benefit from this progress. As a result, our Pediatric Chordoma Initiative has made encouraging strides in recent years. We’ve:

  • Developed and validated 12 pediatric chordoma disease models, and conducted the first deep characterization of pediatric chordoma biology.
  • Tested numerous treatment concepts in these models to assess the activity of drugs or drug combinations that have shown promise in adult chordoma models. This includes screening all approved drugs (≈ 6,000) against pediatric cell lines.
  • Learned more about the natural history of chordoma through our partnership with the National Cancer Institute (NCI), where scientists are collecting patient data to better understand how chordoma develops and grows over time, and determine how patients respond to various treatments.
  • Connected families to teams of experts through the NCI’s annual pediatric chordoma clinic. (Note: the next clinic is taking place the week of October 24, 2022. To participate virtually or in person, contact support@chordoma.org.)
  • Created pediatric-specific resources and provided personalized support to families to help children get the best care and outcomes possible.

Today, our goal is to build on these strong initial advances to make additional progress against pediatric chordoma, with the goal of catalyzing clinical trials that include this subset of our community.

Fortunately, a new $1M donation by the parents of a pediatric chordoma patient – whose previous support has helped make possible our achievements to date – will enable the next big leap and improve the odds for children facing this disease. Over the next five years, the funds will expand on and deepen our progress, and enable us to:

  • Collect additional pediatric chordoma tumor samples. Studying tumor samples is the primary way in which researchers generate ideas about new ways to treat cancer, and a lack of pediatric chordoma samples represents the biggest barrier to advancing this research.
  • Develop and characterize new pediatric disease models. While tumor samples facilitate the generation of new ideas for how to treat pediatric chordoma, cell lines and mouse models are critical to our ability to test these ideas. We’ll build on our successful model-development capabilities to establish, validate, and analyze additional models that more fully reflect the heterogeneity of the pediatric chordoma population.
  • Test drugs against pediatric chordoma models. Identifying existing drugs that could work against pediatric chordoma offers the best chance of providing better treatment options in the near term. We’ll include pediatric chordoma models in ongoing drug screening experiments, whose pace is accelerating thanks to Chordoma Foundation Labs. The data generated will be critical for determining the best treatment approaches for children and designing and justifying new clinical trials.
  • Determine whether pediatric chordomas differ from adult chordomas. Researchers are working to create multi-layered maps (“multi-omic” analyses) of the various aspects of chordoma tumor biology in order to understand drivers of this disease. By including pediatric samples in these studies, we’ll finally be able to answer the important question of whether pediatric chordoma is biologically distinct from chordomas in adults, and potentially uncover unique vulnerabilities to target.
  • Study the natural history of pediatric chordoma. Our partnership with the NCI has led to chordoma being among the first cancers to be extensively studied through their Natural History Study of Rare Solid Tumors. We’ll promote and facilitate additional pediatric patient participation in this study, which will lead to a much more detailed picture of pediatric chordoma, and ultimately to more personalized care.

We’re grateful for this extraordinary recent gift, which will accelerate the development of better treatments for pediatric chordoma.

We need you, too!

The new $1M investment represents a portion of the funding needed over the next few years to maximize progress against pediatric chordoma. To inspire additional contributions to this effort, the donor has set aside $237,500 of the $1M as a matching gift opportunity. To leverage these matching funds today, you can:

  1. Make a donation to ensure better treatments and outcomes for pediatric chordoma patients. Here’s what your support could do:
  • $50 provides laboratory supplies for pediatric chordoma research

    $100 pays for a test kit for a pediatric chordoma experiment

    $250 buys a drug to test in pediatric chordoma cells

    $500 funds a pediatric chordoma research project for a day

    $2,500 funds a pediatric chordoma research project for a week

  1. Create a fundraiser to support pediatric chordoma research. We’re grateful to the following families, whose ongoing fundraisers are making a big difference for kids with chordoma: Dawson’s Circle of Hope, The Drew Barker-Wright Charity, Noah’s Legacy Day, the Riccomini Pub Crawl, and the Sloane Swanton Research Fund.

“In 2016, we were told there was nothing medicine could do for Pio. And that was heartbreaking. But it makes a difference to know we aren’t alone in this.

Gem, mom of pediatric chordoma patient, Pio

Together, we can find better treatments and provide hope to kids and families facing the disease today.



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