Michael J. Fox, center, with USF Health’s Dr. Robert Hauser and MJFF co-founder Deborah Brooks, asked area physicians to encourage their patients to participate in trials that will advance the discovery of treatments for Parkinson’s disease. 

Two dozen neurologists in the hotel conference room overlooking Tampa Bay had gathered to learn more about how they might help USF Health recruit patients for the Michael J. Fox Foundation’s Parkinson’s Progression Markers Initiative, a landmark international study to find biomarkers for Parkinson’s disease. 

Of course, the fact that the Foundation’s affable and inspirational founder, Michael J. Fox, was going to make an appearance late this April afternoon didn’t hurt.

“Is he here yet?” one physician asked expectantly, hand resting on her digital camera.

Fox was scheduled to swing by to speak to the group following his day as one of the amateur golf celebrity-competitors at the 2010 Outback Pro-Am Tournament. In the meantime, the physicians listened attentively as Dr. Robert Hauser, director of the Parkinson’s Disease and Movement Disorders Center, and Deborah W. Brooks, MJFF co-founder, explained the background and protocol for the $40-million, five-year collaborative study. 

PPMI’s 21 clinics in the United States and Europe, including the USF site, aim to recruit a total of 600 participants: 400 people diagnosed with Parkinson’s but who have not yet started medication, and 200 who do not have Parkinson’s. The goal is to find clues to help researchers track the progression of the neurodegenerative disease from its earliest stages – even before symptoms appear — and help them develop treatments that could slow or stop that progression, something no currently available Parkinson’s treatment can do.

An ambitious undertaking

When the Emmy-award winning actor and outspoken advocate for Parkinson’s disease research slipped into the room – his hair still slightly damp from Florida’s humidity – he was quickly introduced by friend and colleague Brooks.

“As a Canadian,” Fox said, moving behind the podium with a sly grin, “the first time I heard the term biomarker, I thought it was what a bear leaves in the woods.”

He thanked the now smiling physicians, some who had driven from as far as Orlando, for coming.

“A study of this size and scope is an ambitious undertaking… and we’re definitely relying on you to help us meet our goals. You are on the front lines with patients – in encouraging them to become involved in trials and helping patients help themselves in the long run,” said Fox. “I ask you to consider working with Bob (Hauser) and his team at USF to refer your patients for screening.”

Diagnosed with Parkinson’s disease in 1991 at age 30, Fox has advanced Parkinson’s. He told the audience of physicians that, while he has good days and bad days, he’s grateful that he still clearly benefits from levadopa, the medication that helps replace the dopamine deficient in the brains of Parkinson’s patients.

Dr. Robert Hauser, USF site investigator for the Michael J. Fox Foundation’s Parkinson’s Progression Markers Initiative, speaks to physicians gathered to learn more about the landmark study.

A sense of urgency

PPMI has a particular sense of urgency for Fox, who works tirelessly to advance research initiatives funded by the Foundation. 

A biomarker is a substance or characteristic in the body associated with the risk or presence of disease. Reliable and consistent biomarkers allow scientists predict, accurately diagnose and monitor changes in the disease over time, as well as definitively determine which medications work and which do not. No biomarker has yet been found for Parkinson’s.

MJJ has long championed biomarker discovery and development, with investments of more than $28 million since 2002. The Foundation is sponsoring PPMI now, Brooks said, because the Parkinson’s field has identified several promising biomarker candidates (including the protein alpha-synuclein) and enough initial data to justify developing a comprehensive biomarker validation infrastructure.

Most therapies only mask symptoms, and Fox believes that finding new targets for Parkinson’s through validated biomarkers will greatly accelerate the development of new treatments.

“It’s not time-neutral for us (patients),” he said. “That’s why everybody at the Foundation is so excited that, with your help, we can build the knowledge and tools we need to understand Parkinson’s disease and find better ways to treat it.”

Living with Parkinson’s disease

During a question and answer session, one physician asked Fox how he was doing. He joked that he felt pretty good, but is still a bad golfer. He gets tired sometimes, he said, and then to laughs, “but I don’t know if I’m exhausted because I have four kids or because I have Parkinson’s disease.”

Fox said he’s learned how to tweak his medication regimen to help minimize side effects and get the most out of his day. He works the medication around his meals. Nutrition, exercise and a supportive family all help, he said.

He continues to play golf, tennis and hockey – never assuming he will not be able to do something just because he has Parkinson’s. “My brain will either let me do what I try, or it won’t. But, it lets me do a lot more stuff than you think it would,” Fox said.

While strapping on skates takes a while, once he’s gliding across the ice with a hockey stick the movements seem to click. “When people see me skate they say ‘How can you skate? You don’t walk that well. I don’t know. It’s another set of wiring, I guess,” Fox said.

“I know one advanced Parkinson’s disease patient who can’t walk and can barely talk, but when he’s on a bike he can go for six miles. He can’t get on or off the bike by himself, but when he’s on it he can ride it.”

Mostly, Fox said, he feels lucky.

“Because of the life I had before this happened…I don’t have to worry about (health) insurance, getting fired – most of the day-to-day issues that are huge for many other people diagnosed with the disease,” he said. “So absent those issues, I’m left with opportunities to help and it’s a great privilege. I’m happy I have the time and energy to do the work.”

Story by Anne DeLotto Baier, and photos by Eric Younghans, USF Health Communications

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USF joins Parkinson’s Progression Markers Initiative (PPMI)