Actor and Parkinson’s disease activist Michael J. Fox told a group of billionaires and philanthropists at the Forbes 400 Summit for Philanthropy on Wednesday about the challenges and successes he has experienced building his foundation for Parkinson’s research after having been diagnosed with the disease 15 years ago.
Fox recalled first being confronted with Parkinson’s symptoms while filming Doc Hollywood. He woke up one morning with a headache and noticed his pinkie finger was twitching. Fox was diagnosed at age 29.
“It took me three years to build a relationship with my neurologist and realize what I was dealing with,” said Fox. “Seven years out I could no longer hide the symptoms.”
That was when Fox decided to go public with his diagnosis. It was also when he realized that he could transform his story about a celebrity with a disease into a story about Parkinson’s. “The fact that this disease became a conversation was energizing,” said Fox. “I realized I had a chance to do something, so I started a foundation.”
Fox said his first step was to find someone who was intuitive, responsive and business-savvy to be his cofounder. Deborah Brooks, who started her career at Goldman Sachs before switching into the nonprofit sector, fit the bill.
Within eight weeks of starting the foundation Brooks said the foundation wanted to fund a biotech company and were told that this “isn’t done.” She said they quickly learned that every assumption in the nonprofit world had to be challenged, including requiring that researchers share their data — something that wasn’t routinely done. And they have gone on to fund specific research at a number of biotech companies. They also realized that while doctors and researchers meant well, the patient’s voice was often missing from the dialogue around the disease.
The Michael J. Fox Foundation for Parkinson’s Research, which was founded in 2000, spends nearly all the money it raises each year and therefore doesn’t have an endowment. This year the foundation is putting an impressive $70 million to work. Brooks said it had 66,000 donors in 2014 with a median gift of $50 and 68 people gave six to seven-figure gifts, among them billionaire and Google co-founder Sergei Brin, who has been a supporter for nine years and who knows that he is at risk of developing a hereditary form of Parkinson’s Disease, so is extremely interested in developing drugs that could stop the disease in its tracks. The foundation has funded biotech companies and university researchers in 25 countries, although two-thirds of their funding has been granted within the United States.
The number of donations has doubled in the last five years, said Brooks, in part because 85% of those donors have a personal connection with Parkinson’s. As the foundation has grown, it has also found ways to expand its reach both through research and drug development, which has led to collaboration with research focusing on other diseases, such as Alzheimer’s.
While Fox’s celebrity has been an asset in drawing attention to the disease and helping Parkinson’s patients feel optimistic and hopeful, Brooks says it also presents a challenge because the foundation sometimes has to earn credibility and prove that it isn’t “just another celebrity charity.” Perhaps for this reason, the foundation’s current CEO Todd Sherer is a scientist and there are several other scientists on staff.
“I saw the foundation as an opportunity for me as a patient to drive the agenda,” said Fox. “It’s hard to think of it as revolutionary, it just makes sense.”
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