Photo: Chordoma Foundation research partners Drs. Cote and Bovee
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A new benchmark to guide future trials
Encouragingly, new potential treatments for chordoma are beginning to emerge more quickly. But because past chordoma trials have each been relatively small, there has never been a sufficiently robust dataset to help researchers, companies, and regulators determine with confidence whether a new treatment is truly better than what has come before.
To help fill this gap, we worked with a group of statisticians and leading chordoma oncologists led by our Senior Clinical Research Advisor Dr. Greg Cote to publish a pooled analysis of outcomes from 328 chordoma patients treated with systemic therapies in phase 2 trials. By bringing these data together, the paper provides a much stronger benchmark for future studies. This will simplify and speed the design of new trials, help reduce uncertainty and risk for companies to invest in developing drugs for chordoma, and give regulators more context for evaluating future trials.
Mapping chordoma’s immune environment
In another paper we supported, this one in partnership with the Cancer Research Institute, Dr. Judith Bovee's team at Leiden University Medical Center provides new insight into the immune landscape of chordoma tumors, which could one day help inform more tailored treatment strategies. They also introduce several new datasets that others in this field can use to build a deeper understanding of chordoma biology.
View all of the recent publications we’ve supported here.
Ask the Experts panel at our previous community conference
Research updates & more at our upcoming conferences
Patients and caregivers: Join us for our International Chordoma Community Conference, September 18–20 in Boston! Along with the opportunity to connect face-to-face with others in this community, you’ll hear about new research progress and the latest in care and treatment advances from scientists and clinicians from leading centers worldwide.
Additionally, researchers and clinicians are invited to register for our upcoming Research Workshop on September 17-18.
CF supporters Zach (chordoma survivor) and Lauren Martin visit CF Labs
More resources = more progress. (Help us grow our team!)
The progress we’ve made together—like launching the chordoma community’s own research lab, and uncovering drugs that provide meaningful benefit to a subset of patients—happens because supporters put significant resources behind this mission. We're adding a Major Gift Officer to our team to expand and deepen that supporter base and enable us to take on even bigger challenges. If you know someone with a knack for getting people excited about scientific progress and a heart for this kind of mission, we'd be grateful if you'd share the opening.
Renee Ofner (chordoma survivor) and her husband celebrate a treatment milestone
"Change itself is not always tragedy": Renee's story
Renee was a pediatric nurse manager in Westchester, NY when a string of symptoms she'd brushed off—trouble swallowing her soup, feeling off-balance at work—led her to the ER and a clival chordoma diagnosis. For three years she mourned the date everything changed, until this year she decided to reclaim it as a celebration of the simple, extraordinary fact that she's still here. Read Renee’s story and consider submitting your own.
Frankie Cordero and Dani Pike (chordoma survivors) at a recent fun run
Signed up for a race this summer? Make it count!
We’re grateful to Frankie and Marea Cordero, who’ve over the years raised more than $13K for our mission, most recently by participating in the Northwestern Survivors Celebration 5K in Chicago. Any race on your calendar can be turned into a fundraiser to drive our progress! We'll help you set up a personalized fundraising page to accompany your run or walk; contact dani@chordoma.org to get started.
(And save the date: our Team Chordoma run/walk returns on Sunday, October 4, in person in Jersey City or virtual!)
Thank you to our sponsors!
We're deeply grateful to our sponsors for their generous support of our upcoming International Chordoma Community Conference and International Chordoma Research Workshop:
Alliance sponsor: Mass General Brigham Cancer Institute
Acceleration sponsor: Cedars-Sinai Medical Center
Champion sponsors: Brown's Neurosurgery Foundation Inc., Penn Medicine Radiation Oncology, NYU Langone Health, Northwell Health
Advocate sponsor: Northwestern Medicine