Last spring, at the end of his sophomore year of college, Jace Ward developed double vision in his left eye. He thought the problem might have been related to a recent car accident. But when doctors investigated, they found a tumor in his brain. After the tumor was discovered, a biopsy showed that Jace had an almost uniformly fatal form of brain cancer called diffuse intrinsic pontine glioma (DIPG), which is usually found in children. “This was my worst nightmare,” Jace said at a recent NCI-sponsored scientific workshop about personal genomic data, where he was a speaker. Jace had been invited to the meeting to share the story of how he and his family used genomic information about his tumor to try to find a treatment that might extend his life—and the challenges they faced in the process. A turning point in Jace’s story was his decision to allow the surgeons doing the biopsy to collect additional samples of his brain tumor for analysis with a genomic test. The test revealed that Jace’s tumor had a genetic mutation linked to brain cancer, called H3 K27M. And, as Jace soon learned, NCI-supported researchers had been testing a new targeted therapy, ONC201, in patients whose tumors have this mutation. Jace did not meet the criteria to enroll in one of the clinical trials of the investigational drug. He was, however, accepted into an expanded-access program that allowed him to receive the drug following treatment with radiation therapy. As part of the trial, Jace takes five pills—a single treatment of ONC201—once a week. Feeling tired the next day has been the only side effect for Jace. After 9 weeks of treatment, Jace was doing “exceptionally well,” according to his mother, Lisa. Now a junior studying pre-law and business at Kansas State University, Jace has been invited to speak at a planned congressional hearing on DIPG and research funding next year. “It was just lucky for Jace that he had the [H3 K27M] mutation—if you could say that a young man who develops DIPG at age 19 can be considered lucky,” said his mother.