Ilan Ganot never planned a career in drug development. But everything changed for him and his wife, Annie, when their son, Eytani, was diagnosed two years ago with a rare disease.
"Even just looking at Wikipedia, you see wheelchair by 10, 11, 12, and that most of the boys don't make it past their early 20s," Annie said in an interview. "It was devastating. Words can't describe, as a parent, how you feel."
Eytani, 4, has Duchenne muscular dystrophy, a genetic muscle-wasting disease. There's no cure for DMD, and no drugs are approved for it in the U.S.
Ilan, who was working with hedge funds at JPMorgan when Eytani was diagnosed in October 2012, decided to change that. After quitting his job, moving the family to the Boston area—a hub for biotechnology research—and raising $17 million, he founded Solid Ventures. It's a for-profit company focused solely on Duchenne. It aims to step in where traditional drug companies sometimes won't go.
"In rare diseases—and there are thousands of them—we find it difficult sometimes to substantiate the economic value, to justify for big companies to roll up their sleeves and jump right in," Ganot said. "What we're left with is a lot of patients that are left without drugs, and a lot of science that is not getting developed."