How Michael J. Fox Put Patients at the Center of Parkinson’s Research

How do you make a research breakthrough for a debilitating disease? For Michael J. Fox, you start by partnering with someone whose lack of medical experience becomes their greatest strength. 

After learning he had Parkinson’s disease in 1991, Fox believed he could create a foundation that would find a cure, but he lacked the knowledge and experience to build one. 

He met with several candidates with backgrounds in healthcare and scientific research, but as Michael J. Fox Foundation CEO Debi Brooks put it, “They were all so impressive… But to be honest, they kind of acted like they were all nailing it.”

As a patient, Fox knew they weren’t even close.  

Fox felt that the patient’s experience was undervalued in Parkinson’s research and that he needed a partner who understood this.

After leaving a career at Goldman Sachs to move into the nonprofit sector, Brooks didn’t have the same qualifications as most other candidates, but that may have been what made her perfect for the job. 

“I had these ideas but nowhere to go with them. I finally realized that maybe the kind of person who would give me a shot was someone who was a little desperate,” Brooks told the audience at the Social Impact Summit at the DGA Theater in Los Angeles, where they accepted the award for Philanthropic Organization of the Year on July 22.

“He was meeting a lot of people - highly credentialed people with health care, research, science, or medicine backgrounds...It was a little intimidating.”

They were impressive, but Fox wanted to build a new model in which patients were treated as experts in their own experience with the disease, and in Brooks he found the partner whose outside perspective aligned with his vision.

Brooks had the organizational abilities, but to succeed, the foundation needed Fox’s belief that a cure could be found.

When introducing Fox and Brooks, Harrison Ford called his Shrinking co-star “the most stubborn optimist I know.”

“I moved to the States when I was 17 to be an actor, and I came broke,” Fox told the audience.

“My father was in the military. My mother was a payroll clerk. We didn’t have a life like I have. It was ridiculous. And I did it. And so it's always been working.”

Fox’s success taught him that improbable goals were achievable and that he could take on a massive challenge before fully understanding how he would achieve it.

“It’s the same thing here. We will do it. Put our heart and our soul into it. We had no idea how to get this done, but I just knew that it would happen. We have people who believe in us and believe in what we’re doing.”

Fox and Brooks both knew that the key to finding a cure was increasing patient participation in the research, and they worked to remove barriers that stood between patients and their ability to enroll in Parkinson’s studies. 

Together, they built tools such as the Fox Trial Finder, which enabled Parkinson’s patients to find studies they could enroll in, removing a major research bottleneck. 

The Foundation also launched the Parkinson's Precision Medicine Initiative (PPMI), which studied thousands of participants, both with and without Parkinson’s, over the course of years, standardizing the collection and analysis of data that they could then share with researchers around the world.

Brooks told the audience that researchers used the PPMI data to validate a biomarker for Parkinson’s disease by analyzing 1,123 spinal fluid samples from study participants. 

“For the first time, we have an objective biological test. It's crazy to imagine: this disease has been around for centuries. When you get Parkinson's, sometimes it takes a while even to get to the right doctor, to have someone understand the symptoms you're describing.”

The biomarker breakthrough enables researchers to conduct more accurate studies when developing therapeutics to treat the disease. 

“We can observe Parkinson's biology in life. The fact that this never existed doesn't really dawn on people, but imagine how hard it is to design a trial and then measure outcomes - to tell someone how you've changed their progression - when you don't have a single objective test.”

Since its founding, the Michael J. Fox Foundation has invested more than $2.5 billion in research, making it the world’s largest nonprofit funder of Parkinson’s research.

“Here is the goal,” Fox said. “Here is the way we’re mapping how to get to the goal… We can build a drug that will save people’s lives. It’s doable.”