In March, Fortune editor-in-chief Clifton Leaf sat down with actor, producer, and activist Michael J. Fox to discuss the disease that has been present in his life since it was first diagnosed in 1991: Parkinson’s.
“If I accept it, and I recognize it, and I look at it, and I’m honest with it, and I say, ‘This is what it is’…I can keep track of it,” Fox told Leaf. If “I don’t recognize it and I don’t accept it, it’s just this amorphous blob of goo that seeps into every cranny of my life and confuse things.”
Fox’s namesake foundation is dedicated to finding a cure for Parkinson’s disease and assisting the development of improved therapies for those living with it. (The foundation has deployed some $900 million to research the disease, rivaling the U.S. government’s spending.) In conversation, Fox explained how he’s encouraging patients to come forward and contribute to research.
“Parkinson’s patients, we’re the experts on what we have,” he said. “We have a responsibility as patients—if we expect these people to do what we need them do, they need to be fully informed on our experience, what works with us, what we respond to, what can contribute.”
Debi Brooks, who cofounded Fox’s foundation and sat with the actor during the interview, said there’s much work to be done. “We still don’t have anything that has been proven to interfere with the underlying disease itself,” she said, adding that a big part of the challenge is deciding what Parkinson’s disease actually is. (That’s where the data collection comes into play.)
Looking back, Fox said he has been surprised about two things as it relates to his disease.
The first? “I didn’t realize we were starting with Kitty Hawk and we wanted to build a space shuttle,” he said with a smile.
The second? “I’m still standing.”
That’s why Fox, 58, recently got his first tattoo, a turtle swimming through five hoops—one for each decade of his life. It’s on his forearm and reminds him of why he started the foundation. It also reminds him to keep his disease “in proportion and find ways to flourish in areas that it doesn’t affect,” he added.
Parkinson’s “doesn’t reach every part of my life,” Fox said. “Certainly the way I move, the way I walk…I’ve lost a certain amount of spontaneity. There are losses. But there are equivalent gains, whether it’s an insight or experience or exposure to people that I wouldn’t otherwise meet. I’ve been incredibly privileged to see progress being made.”
See the video clip above to watch Fox and Brooks’ full interview with Fortune.
For more coverage of Fortune’s Brainstorm Health conference, click here. For news delivered daily to your inbox, subscribe to Fortune’s Brainstorm Health Daily newsletter.