(And Why It Might Work)
Many organizations, like the Osteosarcoma Institute, are funding research in search of better treatments. But this initiative is fundamentally different — not because we oppose those efforts, but because we believe the entire architecture of treatment development needs to evolve.
🔄 The Ability to Iterate — That’s What Changes Outcomes
What has truly transformed survival in some cancers — especially pediatric leukemia — isn’t a single miracle drug. It’s the ability to test, adapt, and iterate.
- Adaptive timing
- Real-time response tracking
- Intelligent combination of therapies
- Continuous feedback from biomarkers like ctDNA, imaging, and clinical evolution
- Collaborative, non-hierarchical teams of clinicians, modelers, biologists, and patients
We believe that this iterative, collaborative process is far more powerful than isolated “breakthroughs.”
💡 We’re Not Building the Next Drug.
We’re rebuilding the logic of how cancer treatment is designed, tested, and adapted — in real time.
Most osteosarcoma research often resembles proprietary software:
- Limited patient agency
- Built behind closed doors
- Controlled by centralized gatekeepers
- Optimized for one-size-fits-all protocols
- Resistant to real-time updates
- Dependent on regulatory pipelines that can take 10–15 years
🔄 What Does “Open-Source Oncology” Mean?
- Start with real-world patients (like Tico) and their urgent needs
- Draw from multiple treatment strategies, including repurposed drugs, immune modulation, metabolic therapy, evolutionary math models, and adaptive chemotherapy
- Coordinate data openly, so patterns across rare cases can inform rapid iteration (rather than be buried in silos)
- Collaborate across borders, bypassing institutional turf wars and protocol orthodoxy
- Respect individual variation — not as a nuisance, but as a feature of intelligent design
- Test and learn, fast, through ethically sound, iterative decision-making
🧬 The Problem with Protocol Culture
Current osteosarcoma care is stuck in a protocol monoculture:
- Treat every patient the same way (MAP), regardless of biology or response
- Use rigid timelines
- Delay adaptive decisions until it’s too late
- Penalize clinicians who deviate, even when evidence suggests they should
- Ignore novel signals — from ctDNA to immune signatures to patient recovery patterns
It’s like debugging a software crash with tools from 1993 — then blaming the user when it fails.
🔥 Our Case Is the Spark — But the Fire Is Bigger
We’re not building a competing institute. We’re launching a movement:
- A storytelling engine (film, site, outreach) that connects families and clinicians daring to try differently
- A networked experiment in evolving care — informed by math, data, and courage
- A challenge to the system to ask: if childhood leukemia went from 10% to 90% survival by embracing adaptive, collaborative, evolving strategies — why hasn’t osteosarcoma?
🚀 Help Us Build the Future
This is open-source oncology.
We start with a single patient.
We invite the world to contribute.