Teen Rare Disease Advocate Fights the Condition that Took His Brother’s Life

A few years ago, Kavi Gandhi’s parents told him that they had become overwhelmed with the demands of running the foundation they had started to fund research for I-Cell disease, a condition that his older brother Yash died from at the age of 9. Kavi told his parents he didn’t want them to close the foundation and offered to take on some of the responsibilities of running it. Since them he has become a fierce advocate. He’s organized events, raised money, and maintained an active presence on social media for the organization. In recognition of his work, Global Genes named Gandhi the 2018 Global Genes’ RARE Champion of Hope for Teen Advocacy. We spoke to Gandhi, development and communications coordinator for the Yash Gandhi Foundation, about his decision to take a central role at the foundation, the perspective he brings to the work as someone who lost an older brother to a rare disease, and his life as a teen advocate.