Portal de Periódicos da CAPES

From film to philanthropy

2023; Elsevier BV; Volume: 22; Issue: 9 Linguagem: Inglês

10.1016/s1474-4422(23)00234-x

1474-4465

Udani Samarasekera,

Film in Education and Therapy

What is it like to be diagnosed with an incurable movement disorder as a young adult? When should you tell people about your illness? How does the diagnosis affect your mental state? Or your close relationships? Still: A Michael J Fox Movie provides an open and honest insight into these challenges, in the words of Michael J Fox himself. In Still, Fox relays his original perspective as someone in the global spotlight, whose profession relies on controlled movement and speech. Still starts in Florida in 1990, with a dramatisation of Fox in his 20s, waking up hungover in his hotel room and noticing his small finger twitching as he blinkingly looks at his hand in the sunshine streaming through the curtains. Fox, who narrates throughout, says the “trembling was a message from the future”, in reference to both his 1985 film hit Back to the Future and his soon-to-be diagnosed Parkinson's disease. The documentary, based on the actor's memoirs, charts Fox's journey from a young child growing up in Canada, to his school years when he takes his first drama class, to him moving to Los Angeles to try to make it in Hollywood, and eventually to him achieving phenomenal success. Alongside his career trajectory, his journey with Parkinson's disease is told, starting with his early diagnosis in 1991 at age 29 years. Fox's wife, Tracy Pollan, who he met on his hit TV show Family Ties (she was his character's on-screen girlfriend, before life imitated art), also appears in the documentary. Their romance is recounted in Still, and the viewer gets an insight to the couple's relationship with their four children. Family life is full of fun and laughter, amid dealing with the realities of the disease, including Fox's injuries following falls. A one-to-one interview with Fox by director Davis Guggenheim punctuates the film throughout. But only Fox is shown responding to the off-screen interviewer, which is fitting; he is the star after all, and this is his story of stardom and illness. Scenes from Fox's screen work are also shown to portray his life, but this tactic is overused and the viewer might find these scenes superfluous. The most powerful parts of Still are when Fox speaks about his illness and how he coped (or didn't cope). He recalls his diagnosis and the haunting words of the neurologist: progressive, degenerative, incurable. On screen, Fox would try to hide the tremor in his left hand by holding an object such as a phone or briefcase. He became an expert at timing his Parkinson's medication, taking it only when he required maximum symptom control. Off screen, Fox turned to alcohol, and he admits to becoming an alcoholic at one point. It was 7 years before Fox went public about his diagnosis. At first, he regrets this decision, then the viewer sees him start to embrace the announcement and consider his disease as a beginning rather than the end. “I wanted to be in the world and not take this [disease] in retreat from the world”, Fox tells Guggenheim. Reaching this way of thinking about his disease was a turning point in Fox's journey and his interest in helping the Parkinson's community. In Still, the viewer sees inspirational archive footage of the actor testifying before US Congress, asking for an increase in research funding for Parkinson's disease. Soon after, in 2000, Fox launched the Michael J Fox Foundation for Parkinson's Research, and this non-profit organisation has now raised more than US$1·5 billion for research into the disease. Deborah Brooks, co-founder and CEO of the Foundation, tells The Lancet Neurology that in preparation to go before Congress, Fox met with many Parkinson's disease experts and “that really did galvanise his point of view about where he could make a difference”. Fox quickly realised that “the science is ahead of the money” and he decided to launch the non-profit Foundation with Brooks, who has a background in business. The Foundation funds basic, translational, and clinical research and galvanises patients for advocacy, fundraising, and research participation. Its staff includes a team of 19 neuroscientists who identify and peer review promising research ideas or work in the Foundation's policy team. Business strategists are also employed by the non-profit organisation, “to prioritise”, explains Brooks. “They're looking for process improvements…They figure out how to do as much as we can as fast as we can.” Speaking about the Foundation's mission, Brooks says “our goal is to do whatever we can to speed drug development”. As well as taking on “the toughest” projects in research, Brooks states that the Foundation “will staff the long-term needs for the field” and they “will convene key partners”. Regarding research priorities, Brooks notes that “they evolve…priorities have to evolve with the state of science, and it has to be matched to what's possible”. The Foundation has had recent success. In May 2023, researchers funded by the Foundation reported that the emerging method—α-synuclein seed amplification—can classify people with Parkinson's disease with high accuracy, provide information about their molecular differences, and detect prodromal individuals before diagnosis. Follow-up work includes investigating “the impact of assay results on long-term outcomes”, comments co-lead author Andrew Siderowf, Director of the Parkinson's Disease and Movement Disorders Center at the University of Pennsylvania (Philadelphia, PA, USA). Siderowf—a long-time researcher with the Foundation and co-lead of its flagship Parkinson's Progression Markers Initiative—thinks the “vital difference” the Foundation provides compared with other funders is that it takes on “higher risk and potentially more impactful studies” that otherwise might not have received funding. “It's really crucial that way”, he notes. Looking ahead, Brooks says the Foundation plans “to be big pictured and open”. She hopes, for example, that “in scalable tissue systems like blood, we are able to do a lot of screening of risk factors for neurodegeneration much earlier in life…perhaps as early as your 40s…One of the things we want to do is start looking and identify people where the biology exists and predict symptoms by decades”. The future for the Foundation looks ambitious and optimistic, qualities the film Still shows Fox has himself. For young people growing up in the 1980s, it would be hard not to be a fan of Michael J Fox's TV shows and films, with his impeccable comedic timing and well delivered one-liners. His screen work will forever be a part of growing up then. But in the future, his contributions to Parkinson's disease research could win him a whole generation of new fans.