IT’S CHILDHOOD CANCER AWARENESS MONTH
RESEARCH INSTITUTIONS ARE THE BARRIER!
NOT THE RESEARCHERS
Pediatric glioblastoma remains one of the most devastating childhood cancers. My family has lived this journey Documentary Film.mov – Google Drive
The greatest obstacle to progress is not science or technology—it is culture. Too many prestigious institutions hoard data, guard funding, and even divert resources from hospitals that struggle to meet the needs of their patients. The result: duplication, silos, wasted resources, and entire regions left without adequate care. While institutions protect their turf, children are dying from a disease that has seen little meaningful progress in decades.
Why Change Is Non-Negotiable
- Rarity demands scale. No single center sees enough cases or holds enough data to solve this disease. Only pooled knowledge and shared resources can yield statistically valid insights.
- Collaboration accelerates progress. Unified trials and infrastructure reduce duplication, broaden patient access, and generate results in years—not decades.
- Resources are scarce. Every dollar consumed by competition or redundant effort is a dollar not spent advancing cures. Shared platforms ensure maximum impact.
- Mission must outweigh prestige. Institutional rivalries cannot be allowed to determine life-or-death outcomes for children.
For fifty years, billions of dollars and countless hours have been invested with negligible return. Progress has been stalled not by lack of ability, but by a siloed, protective culture. We know what must be done:
- Open, unrestricted data sharing across all centers.
- Shared infrastructure for biobanks, genomic data, and AI platforms.
- Joint clinical trials that expand access and accelerate results.
- Transparent research sharing to prevent duplication and expand the data pool.
- Equitable funding distribution that strengthens resource-limited hospitals.
If a cure is to be found, collaboration and transparency must replace competition and concealment. Every institution should embed transparency and collaboration in its mission.
The Path Forward
Change will not occur by good intentions alone. Institutions are unlikely to move independently. What is required is a pediatric glioblastoma summit—a forum where leaders agree on principles, establish timetables, and commit to implementation.
Childhood Cancer Awareness month is the time for each institution to pledge their support for such a summit; a summit that will knock down barriers, one that will advance collaboration, transparency, and urgency. Make your pledge below.
Click to sign the Institution Pledge to Drive Collaboration and Transparency
