As the spotlight-seeking keener he portrayed as Alex P. Keaton on the 1980s sitcom Family Ties, Michael J. Fox seared his boyish good looks and infectious energy into the minds and hearts of millions. Today, the 57-year-old is parlaying his enduring popularity into an even greater role – mobilizing patients and researchers to bring an end to Parkinson’s disease, which affects one in 100 people over age 60.
Brash, cheeky, irreverent in his breakout role (for which he won three Emmy Awards), Fox, who went on to several celebrated roles on television and in film, was by all accounts at the pinnacle of his acting career in 1991 when a persistent twitch in his pinkie finger led to a Parkinson’s diagnosis.
While the single biggest risk factor for Parkinson’s is advancing age – the average age of onset is 60 – Fox defied the odds, and at age 29 the Edmonton-born actor found out he had a neurodegenerative condition for which there was no known cause or cure. It, too, is irreverent and brash.
For the next seven years Fox grappled with a new normal. He kept his diagnosis private until 1999, when, at age 37, he went public, quickly dispelling myths about what is often considered an “old person’s” disease. He was still as youthful and ebullient as before, but with impaired movement, prone to involuntary tremors, tics and “different” facial expressions – all hallmarks of a disease that defies typical diagnostic methods and, for now, a cure.
A greater purpose
Fox was once again a poster-boy. This time, rooted in a greater purpose and galvanized by a growing community of Parkinson’s patients and stakeholders, he was poised to make a profound global impact on an entirely different level.
“After his diagnosis and learning more about Parkinson’s, Michael would often say, ‘The science is ahead of the money,’” says Deborah W. Brooks, co-founder and executive vice-chairman of the Michael J. Fox Foundation. “At the time of the foundation’s founding in 2000, the Parkinson’s research landscape was stalled – there was limited funding, and yet big ideas.
“As a public figure and as a patient himself, Michael saw an opportunity and felt an obligation to create a new model for research funding – to try new processes and take more risks to accelerate the science and help move forward improved Parkinson’s therapies and, ultimately, a cure.”
No one is more optimistic about the strides toward a cure than Fox himself, who sits on the foundation’s board of directors and serves as its inspirational leader. During an interview published in People in August 2018, the actor – who has been living with Parkinson’s for almost half of his life – said with certainty, “We’ll be able to predict it, and we’ll be able to stop the progress of the disease.” Bold. Brazen. For many on the front lines of the disease, however, it now seems entirely possible because of Fox and his foundation’s relentless efforts.
Funding Canadian researchers
To date, the Michael J. Fox Foundation, the “world’s largest non-profit funder of Parkinson’s research,” according to its website, has raised more than $800 million US, funding more than 3,000 research projects worldwide.
“Because of his reputation and his reach, and the work that he does as an actor, but also as an advocate, Michael can raise significant dollars and set up his foundation to do that, and really has looked at the translational end of the pipeline,” says Joyce Gordon, CEO of Parkinson Canada. “How can we take novel ideas, which is what Parkinson Canada funds, and pick the ones that we think have some traction and might move us forward, and how can we develop that into something tangible for today? And that’s really significant because there’s lots of ideas, so it definitely has added to the pool of funds available for research, which is critical, be it in clinical trials or just really looking at quality of life and other spectrums of issues that are big team efforts. And so it’s a very significant contribution globally as well.”
The Michael J. Fox Foundation has now funded more than $30 million in research programs at institutions across Canada. That accounts for approximately 130 research projects, among them a 2018 grant awarded to researchers, led by Dr. Neil Vasdev, at the University of Toronto to develop a new brain tracer – a radioactive substance that looks for disease in the brain using positron emission tomography (PET) scan images. It’s early days, but scientists hope to use these brain tracers for diagnostic purposes and a “response biomarker for patients with Parkinson’s disease and several other brain disorders.”
Dr. Anthony Lang, director of the Movement Disorders Clinic at the University Health Network, Canada’s largest research hospital, in Toronto, also applauds the efforts of Fox and his foundation in supporting and facilitating “quite a large number of very important research projects that have moved the field forward.”
A senior scientist at the Krembil Research Institute, Dr. Lang is buoyed by what lies ahead in Parkinson’s research. “There are international efforts mounted on multiple fronts to answer the important questions that will allow us to address many of the unmet medical needs,” he says. “The major hope is that we will be able to diagnose the disorder in at-risk individuals and initiate protective therapy even before they become symptomatic. This may involve approaching Parkinson’s disease in the same way that we do cancer now, recognizing the need to differentiate a variety of different subtypes that respond to treatment distinctly differently. As with cancer treatment, we will probably also need to develop combinations of therapies – ‘cocktails’ – designed to affect selected cellular mechanisms that may contribute to the progressive neurodegenerative process.”
New research, new treatments
In Canada, some 100,000 people live with Parkinson’s – a number that is expected to double by 2031, due in part to a growing aging population. Often patients can have symptoms for six to 10 years before they are diagnosed. Traditionally, limited drug therapies, or deep-brain surgery in more critical cases, are part of a limited roster of treatment methods. However, the increasing emergence of non-invasive treatment techniques, including laser therapy and ongoing genetic research toward the goal of personalized treatments, is providing new hope.
“A lot of people live a long time with Parkinson’s,” says Gordon. “They adapt over time. So it’s really important to be physically active, eat well, look after yourself, to work with your healthcare team and to reach out to get information about Parkinson’s.”
Confidence continues to spring from the collective efforts of the scientific and medical communities, all spurred by a Canadian actor who turned a life-changing diagnosis into a momentous crusade.
“We’re much closer today than ever before to finding a cure. The science is exploding, and patients and families have great cause for optimism,” says Brooks, referring to how Fox’s efforts have changed what it means to live with Parkinson’s disease. “Dozens of new therapies – to both improve symptoms and potentially slow, stop or even prevent the disease – are moving through testing, and today more and more patients are lending their voices to research, helping scientists form a holistic picture of the disease. As we did from the beginning, the foundation is continuing to place smart bets as the field evolves. No stone is going unturned as we continue our mission of ending Parkinson’s.”
The latest research has included looking at the effectiveness of CBD oil on Parkinson’s. Some studies suggest that it may help with motor symptoms of the disease.
For Your Podcast Playlist
When Life Gives You Parkinson’s is a new podcast with Corus Entertainment’s CuriousCast and Parkinson Canada. The podcast is co-hosted by 46-year-old broadcaster Larry Gifford, who was diagnosed with Parkinson’s in August 2017. The series, co-hosted by Niki Reitmayer, examines the impact that a Parkinson’s diagnosis has on a person, a family, a friendship, a colleague, a company and a community. In addition to exploring Gifford’s journey as he comes to terms with the disease that affects millions, the podcast features expert guests, including scientists, doctors and other care team members. Find it on iTunes.