Josh Sommer's excellent talk at the Sage Congress getting more attention. Josh is a 22 year-old college drop-out who was diagnosed with a very rare brain tumor called chordoma as a freshman at Duke. When he discovered the average life expectancy for this disease is seven years and only 20-30% of the patients are cured, he immediately began reading the research. He was disturbed to discover how little research was going on related to chordoma and began working in the lab of a Duke researcher, but realized that progress was still way too slow. He then began to identify the things that were slowing down the speed of the research, and eventually founded the Chordoma Foundation in 2007 to begin attacking these barriers.
The first barrier they decided to tackle was the relatively limited flow of information between chrodoma researchers. As the foundation led workshops and brought researchers together, they saw substantial increase in the number of questions around the disease being answered, and eventually built a research roadmap. He makes a compelling case for the need to change from a publishing model established 400 years ago that is no longer appropriate for the rapid pace of technology to an open access model that changes the culture for data and information sharing across the scientific community.