Parkinson’s disease typically affects people when they’re around 60 years old. For star actor Michael J. Fox, it hit at 29. Fox was diagnosed in 1991 but didn’t publicly reveal his disease until seven years later. That decision was fueled in part by a desire to raise awareness about Parkinson’s and fund research to fight the degenerative disorder of the nervous system. Two decades later, Fox has become one of the most respected advocates in medicine.
His Michael J. Fox Foundation for Parkinson’s Research, founded in 2000, has raised and invested some $900 million in the quest for a cure. Fox carries a deep belief that Parkinson’s patients themselves must play a central role in curing the malady. “We’re the experts on what we have,” he said in a recent Fortune interview. “We have a responsibility as patients—if we expect [medical researchers] to do what we need them to do, they need to be fully informed on our experience, what works with us, what we respond to, what we can contribute.”