Sessions
Fri Sep 18
Social Meet & Connect 4:00-5:00 PM
Informal networking before the evening program.
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Social Welcome Reception with Researchers 5:00-7:00 PM
Reception with researchers staying on from the International Chordoma Research Workshop, which ran earlier that week. Posters were on display.
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Awards Uncommon Awards Dinner 7:00-9:00 PM
Evening awards honoring research breakthroughs, collaboration, fundraising leadership, and a caregiver/advocate couple. The first TBXT Challenge winner was announced as a late addition.
- TBXT Challenge: the first compound to cross the binding threshold. The winning team is from a Boston-area company (the name was unclear in the recording).
- Uncommon Collaboration Award to Dr. Bai (Beijing) for 10+ years of collaboration and for leading China's first national chordoma guidelines.
- Collaboration award to the Global Chordoma Consensus group (150+ experts, 90 institutions, 20 countries).
- Uncommon Champion Award to Steve Mandel (Team Chordoma, board member since 2017).
- Impact award for caregivers and advocates honoring Sharon, a longtime patient advocate who died in Nov 2025, and her husband. The award name was unclear in the recording.
- A recognition for patient education work (hard to hear; possibly for a Session III speaker).
Recordings: Chordoma Foundation TBX Challenge Awards · Chordoma Foundation Uncommon Award Presentation · Chordoma Foundation Award Presentation · Supporting the Chordoma Foundation · Uncommon Champion Award Presentation · Chordoma Foundation Underground Impact Award
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Sat Sep 19
Research Welcome: Fireside Chat with Research & Clinical Leaders Morning
A panel covering takeaways from the research workshop and how surgery, radiation, and systemic therapy are changing.
- New single-cell and spatial tools show how tumors differ, both between patients and within one tumor. Treatment is moving toward matching each patient's biology.
- Researchers are attacking chordoma from immune, genetic, and other angles at once. The expected answer is a combination of therapies, not one drug.
- Spine/sacrum: radiation alone is now an option for some patients. Separation surgery plus high-dose radiation and carbon-ion results (Japan, Europe) changed the conversation, which now centers on whether a surgery's side effects are acceptable.
- Skull base: doctors are moving away from radiating every patient. After surgery, tumor pathology helps decide who needs radiation. Better tools allow more complete removal, called supramarginal resection.
- Cryoablation freezes tumor tissue with argon and helium gas cycles. It is done by interventional radiology and should be decided by a multidisciplinary team.
- Radiation plans are built around dose limits that protect function, because chordoma patients live a long time and quality of life matters.
- Current drugs give limited benefit and are used mostly at recurrence. The goal is to use systemic therapy earlier.
- CAR-T challenge: dense tumor matrix and high pressure keep cells out. One idea is to soften the tumor with enzymes first.
- Q&A: the cause of chordoma is still unknown. Genetics play a role, but routine family screening isn't generally done.
Recordings: Chordoma Foundation Strategy and Navigator Programs · Chordoma Research and Treatment Panel
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Strategy Chordoma Foundation 2030 Strategic Plan Morning
Josh Sommer presented the new five-year plan: why this is a turning point and the priorities through 2030.
- MSK data over several decades shows treatment has become more tailored: surgery used more selectively, and radiation alone used more often.
- Skull base: gross total resection (GTR) is now achieved in most patients at leading centers such as Pittsburgh. At 10-15 years of follow-up, GTR patients go much longer without the tumor coming back than patients with partial removal. Near-total removal is not as good as total.
- The old '7-year median survival' figure is out of date and expected to improve as newer data matures.
- Recurrence (Mayo series): about half of patients were alive at 5 years. Those who could have both surgery and radiation for the recurrence had a median survival of about 10 years.
- Genomic profiling finds a usable drug target in a minority of patients.
- Priorities: better access to expert care (more patient navigation), real-world data and a registry (chordoma has no billing code of its own), survivorship, and drug development.
- New types of therapy are growing fast: antibody-drug conjugates, cell therapies, and radioligands (drugs that deliver radiation straight to the tumor).
- Why now: the research groundwork built over 15-20 years (models, the CF lab, brachyury structure) is finally in place.
- 2030 goals include bringing brachyury-targeted drugs forward and extending survival after recurrence. Some specific targets were garbled in the recording, so check the full 40+ page plan on the CF website.
Speakers: Josh Sommer
Recordings: Chordoma Foundation Five Year Strategy
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Research Advancing Chordoma Drug Discovery & Development Session I
Daniel Freed on repurposed drugs, brachyury (TBXT) as a drug target, new immune approaches, and the CDK12/13 finding.
- Drug repurposing has produced 3 active drug options. About 15% of patients see substantial tumor shrinkage, sometimes lasting more than 2 years.
- The focus has shifted to testing experimental drugs and discovering brand-new ones.
- Brachyury drug discovery took off around 2022, and many companies now work on brachyury.
- Brachyury fragments shown on the tumor cell surface are recognized by the immune system, a bit like a virus. That opens the door to vaccines, antibodies, and T-cell approaches.
- A NEW partnership with the Mark Foundation for Cancer Research (announced Sep 18) will fund grants in 2027 to build this immune-targeting approach.
- TBXT Challenge: 26 participants across 4 continents and 9 countries. It drew more than $5M in company resources. Only about 1% of roughly 1,600 transcription factors have ever been drugged.
- CF lab finding: second-generation CDK7/CDK9 inhibitors did NOT lower brachyury. CDK12/13 turned out to be the real drivers. Blocking them lowered brachyury and killed cells in 5 cell models. The Foundation is talking with a company that has CDK12/13 inhibitors about a possible future trial.
- Current priorities: drug combinations, personalized treatment with biomarkers, and borrowing new technology from other cancers.
Speakers: Daniel Freed
Recordings: Advancing Chordoma Drug Discovery and Development · Drug Discovery and Clinical Research
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Trials Clinical Trials & the New Platform Trial Session I
Dr. Cote on why chordoma trials are hard and the design of the upcoming multi-arm platform trial.
- Trials are hard because the disease is rare (about 300-600 US cases a year) and tumors grow at very different speeds. Slow-growing tumors can make a drug look better than it is in single-arm trials.
- Tumor response is measured with RECIST. One earlier trial example had 6 responses in 29 patients.
- Individual patient data from 12 past trials was pooled. Response rates were low, but the pooled results give a benchmark for how long tumors stay controlled. New trials can use it as a comparison group, which means fewer patients have to be randomized.
- Platform trial: several drug arms under one design. Each arm starts with about 12 patients and grows to about 30 if there's a signal. It will open at several sites at once, with an optional European comparison arm on standard therapy. FDA meetings on the design are planned.
- Genetic testing: targeted panels (200-400 genes) or broader ones. Whole-genome sequencing gives more data than is useful for treatment decisions right now.
- Q&A: combinations under discussion include pairing a blood-vessel-blocking drug with immunotherapy.
Speakers: Gregory Cote
Recordings: Chordoma Research Workshop and Clinical Trials
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Trials Clinical Trial Participation Survey Results Session I
Community-wide survey on what helps and what blocks trial participation. The results will shape trial design, including the platform trial.
- About 350 respondents (286 patients, 68 caregivers), offered in 4 languages.
- Top motivator: shrinking or stabilizing the tumor (about 74%), followed by helping research and protecting quality of life.
- Would join a trial that could shrink or eliminate the tumor: 84%. Stabilize it: about 34-39%. Improve quality of life: 51% of patients and 55% of caregivers.
- Barriers: side effects, cost and insurance, and travel. About half would not travel far for a trial.
- Only about a quarter knew about the CF Trial Travel Assistance Program. Once told, about 80% said they'd be more likely to join.
- Knowing about trials matters: 77% of those familiar with trials were definitely interested, compared with 35% of those who weren't.
- Placebo: only 12% would join a placebo-controlled trial. That rises to 45% with crossover and 59% with an active-drug comparison. So: avoid placebo and use crossover.
- About 75% would not stop a current treatment to join a trial.
- Doctors are the most trusted source of trial information, followed by the Foundation.
- Patients want clear information on costs, side effects, and benefits, a step-by-step walkthrough, a single point of contact with after-hours access, and support for side effects and emotional needs during the trial.
- FDA and EMA representatives attended the meeting and were described as open to finding a workable path.
Recordings: Chordoma Clinical Trial Survey Results
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Community Table Discussions: Research & Trials Midday
Small-group feedback after Session I, followed by a staff recap.
- The mood was hopeful: brachyury may finally be druggable, and more options are coming for recurrence.
- Requests: simpler summaries (for example 30-60 second videos), researcher posters shared with the public, and a single overview to bring to your doctor.
- The Trial Travel Assistance Program is well funded and has money available NOW. Reach out if cost is a barrier.
- The platform trial is expected to open at about 4-6 US sites first and add more over time.
- The Foundation's new drug discovery lead joined in March 2026, coming from Boston-area biotech.
Speakers: Josh Sommer
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Care Global Consensus & the 2026 Guidelines Session II
Dr. Stacchiotti on the history of global chordoma consensus and what's in the new update.
- 2013: first consensus meeting in Milan, set up through ESMO. Published in Lancet Oncology (2015) with 40 co-authors from 12 countries, and added to the ESMO guidelines.
- A patient (lay) version was written with the same content in plain language and translated into many languages. It's also a key teaching tool for doctors.
- Later meetings covered local recurrence, pain and supportive care (about 60 authors), and a shared definition of surgical margins.
- June 2025 Milan meeting: an update for primary localized chordoma only, with 150+ authors from 20+ countries. Published in JAMA Oncology, with flowcharts and a table of what changed.
- The new guidelines emphasize expert pathology with molecular tests, MRI as the best imaging, and supportive care from the start. They add sections on interventional radiology and pediatric chordoma, and cover poorly differentiated chordoma.
- The patient version was posted on the CF website just before the conference, in English. Translations (Spanish, Italian, Chinese, and more) need volunteers.
- Next: guidelines for recurrent and metastatic disease, a pediatric-focused document, and work with regulators, since access to drugs varies widely around the world.
Recordings: Chordoma Global Consensus and Guidelines
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Care Pediatric Chordoma Network Session II
Dr. Wedekind on why kids need a dedicated network and how the virtual tumor boards will work.
- Chordoma in children is even rarer. Many pediatric oncologists never see a case in their whole career.
- Children's tumor biology may be different. Poorly differentiated chordoma (PDC) is more common in children, and dedifferentiated chordoma is rare at any age.
- NIH runs a one-day chordoma clinic once a year. The network is meant to reach families faster, all year.
- Virtual tumor boards: families or doctors upload scans and records, and a worldwide panel (radiology, pathology, pediatric oncology, radiation oncology, surgery) reviews them and gives guidance. Sessions will be at morning and late-night times so every time zone is covered.
- Future plans: biorepositories, a pediatric registry, pediatric guidelines, education, and connecting families with each other.
Speakers: Mary Frances Wedekind
Recordings: Pediatric Chordoma Network Presentation
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Care Survivorship & Rehabilitation Medicine Session II
Dr. Ruppert on symptoms by tumor location and on widening your care team beyond surgeon, radiation oncologist, and medical oncologist.
- Mobile spine: chronic pain, trouble walking, fatigue, and depression or anxiety.
- Sacrum: trouble sitting, leg pain, bowel and bladder problems, and sexual dysfunction. The sexual health conversation should happen with everyone of childbearing age and beyond.
- Skull base: cranial nerve problems, swallowing, hearing and balance, and vision.
- Grow your team: physical and occupational therapy, supportive care (the new name for palliative care, involved early), nurses, and pain specialists. The new guidelines specifically include rehab.
- Therapy works when it's the right therapy with the right precautions, so let therapists know your history.
- Specialized therapies include vision, vestibular (balance), speech and swallowing, and bracing (an AFO crosses the ankle; a KAFO crosses the knee).
- SAFETY: this year two patients with cervical chordoma who'd had neck radiation fainted after massage (carotid sinus syndrome). Tell massage therapists and acupuncturists your treatment history.
- Survivorship is a strategic plan priority. The Foundation is building a network of survivorship providers, including abroad (recently found physiatrists in Italy).
Speakers: Lisa Ruppert
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Community Table Discussions: Care & Access Afternoon
Small-group feedback on gaps in care.
- The biggest gap is at diagnosis: not knowing a chordoma specialist is needed, or where to find one.
- Insurance: state-limited networks can block out-of-state specialists. Traditional Medicare with a supplement lets you see doctors anywhere, while Medicare Advantage is often restrictive.
- Patients in far-away trials need a local doctor who can handle complications.
- Ideas raised: an insurance consultant through the Foundation, chordoma 'centers of excellence' recognized by health plans, planning now for the cost of future drugs, rare-disease lobbying, childcare at conferences, and nutrition research.
- The Cystic Fibrosis Foundation's drug success was mentioned as a model.
Recordings: Chordoma Care and Insurance Discussion
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Community Mobilizing the Community Session III
Kenny Brighton introduced four survivor speakers. Your recording captured Dani Pike's talk on the Every Patient Initiative.
- Every Patient Initiative: staff are personally calling as many patients and families as possible to listen and help each find a meaningful way to get involved.
- Common themes from those calls: uncertainty continues after treatment ends (surveillance, recurrence, new symptoms), people want connection with someone who understands, and people want to be seen as more than their diagnosis.
- Peer-to-peer fundraising: 10,000+ unique donors, and 9,705 of them (94.2%) made their first gift through a peer fundraiser. 21% of all donors came in that way.
- A typical fundraiser brings in about 12 new donor households. If 1 in 10 of the 4,000+ patient households held one, that could raise $500K+.
- Ways to take part: Zoom support groups, peer guides, Chordoma Connections, sharing your Uncommon Story, becoming a monthly Perseverance Pledger, fundraising, and research participation.
- Team Chordoma: raised $100K+ last year with 175+ community participants.
Recordings: Empowering the Chordoma Patient Community
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Sun Sep 20
Social Expressive Arts Workshop & Community Art Project 9:00 AM-12:00 PM
An expressive arts therapy workshop and a community art project around messages of encouragement. Not recorded.
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