For the past eight years, music producer and promoter John Rivera has raised money to find a cure for diffuse infiltrative pontine glioma (DIPG), a rare but fatal brain stem tumor.
For Rivera, the fight is personal. His son, Cristian, was only 6 years old when succumbed to the devastating disease nearly a decade ago. DIPG affects less than 300 kids a year but the mortality rate is extremely high — survival time is measured in months, and there has been no significant increase in survival rates in more than 30 years.
"It's still very difficult," Rivera told the New York Daily News, which profiled his work earlier this week. "But I have to be one of the people — one of the tools — that helps find a cure."
Rivera created the Cristian Rivera Foundation in 2009, six months after his son's death, to raise DIPG awareness and to support hospitals and organizations researching cures for the disease, including Weill Cornell Medicine, where his son was treated by Dr. Mark Souweidane, the director of the Weill Cornell Pediatric Brain and Spine Center.
The foundation plans to honor Dr. Souweidane, who has conducted a new treatment trial partially funded by the foundation, during its annual celebrity fundraising gala on Nov. 30.
Learn more about the event and Rivera's story here.