Gloria Garcia Castellvi, a friend of Juan Manuel who lost her little girl Alicia to DIPG, came all the way from Spain to see me on Tuesday, December 6. Gloria is very involved in the DIPG community in Spain and hosts a DIPG symposium there every February. We had a very emotional conversation. She told me stories about Alicia’s journey and they brought me back to my own experience when Cristian was sick. We also talked about curedipg.org, a new platform I am forming that will have 30 DIPG foundations and families participating, pooling our resources to eventually open a cli nic where leading doctors in the DIPG community can work toward a cure. I’m excited about this new idea, which Juan Manuel will run, and I was happy to discuss it with Gloria. She and I plan to have dinner together in Spain when I go in February for the next DIPG symposium.
John “Gungie” Rivera
Forever Cristian’s Daddy