SA Forum is an invited essay from experts on topical issues in science and technology.
Parkinson’s disease is coming to prime time. Tomorrow night Michael J. Fox returns to television as the star of his own sitcom nearly 15 years after retiring from Spin City to focus on finding a cure for his disease.
Michael has been careful to emphasize that the show isn’t really about Parkinson’s. Based loosely on his real life, The Michael J. Fox Show mines laughs from the everyday trials and tribulations of family man Mike Henry as he resumes his TV news job following a Parkinson’s diagnosis. Yet simply by featuring a main character living with the disease, the show puts Parkinson’s into the national conversation. This is a good moment to consider how much work remains to be done in the realm of neurodegeneration research.
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The question we’ve heard most often at The Michael J. Fox Foundation is: After more than 20 years with Parkinson’s, how is Michael doing well enough to go back to work? There’s no simple answer. He acknowledges the good fortune he has in a loving, supportive family and financial independence, which have provided advantages in dealing with his disease. He says, “Everybody gets their own version of Parkinson’s. Different meds work for different people, and you’re always trying to find the perfect combination. I think I found what works for me right now. And I’m so lucky.”
But the reality is that for the estimated five million Parkinson’s patients worldwide, the status quo is still not good enough. They are living with Parkinson’s movement difficulties and nonmotor symptoms such as mood and sleep disorders as well as cognitive impairment. Medication and therapies alleviate some symptoms, but create their own problems and fail to address all the effects of Parkinson’s. We have some disease-modifying treatments in clinical trials, but nothing on the market yet. The grim truth is that those diagnosed with Parkinson’s will get worse. And for every patient, a community is affected, as the impact of the disease ripples to loved ones and caregivers. This is a global problem, but one that we can solve.
Researchers are learning more about the role of the protein alpha synuclein (the Parkinson’s corollary to amyloid beta in Alzheimer’s), which misfolds and clumps in the cells of people with the disease. Just last month the Fox Foundation–sponsored Parkinson’s Progression Markers Initiative study reported preliminary data in JAMA Neurology on protein levels in spinal fluid, a critical milestone in pursuit of biomarkers that could lead to swifter diagnosis and drug development. On the long journey toward drugs that could prevent or slow disease progression, these are some of the most promising avenues we’ve seen. And investments in one area of neurological disease are likely to pay dividends across the spectrum as research illuminates pathological overlaps between, for example, Parkinson’s and Alzheimer’s diseases.
With budgets tight there is a tendency to adopt an incremental and safe approach to project development—taking small steps forward to secure more funding. Although small steps are important, we also need to follow promising early results into uncharted territory. Drug repurposing, for example, could allow us to take existing drugs that have already been proved safe for treatment of other conditions, such as diabetes and hypertension, and apply them to Parkinson’s. Researchers are also characterizing genetic mutations associated with Parkinson’s, such as in the LRRK2 gene, to identify risk and protective factors.
And here’s another idea: Instead of holing up in our laboratories until we have enough vetted and analyzed research to enter the lengthy process of publishing a manuscript, we researchers should set aside our egos and share our data and our tools. Open-access data, nontraditional partnerships and crowdsourcing are some ways we can move the needle forward.
Finally, let’s revisit the partnership between investigators and patients. Technology-enabled solutions give researchers near-instantaneous access to a pool of informed and interested volunteers. We need to use tools like Fox Trial Finder and ResearchMatch to identify and connect with those potential participants. More so, we need to view them as collaborators—to keep them in mind when we design studies and follow up to let them know our findings. Satisfied volunteers make repeat participants.
I guess I’m asking a lot. But these should be our default practices: Funding inventive and innovative projects and collaborating with our peers and nontraditional partners as well as patients.
Michael J. Fox is optimistic, and I’m so glad to see him back on the screen. His attitude is infectious, and we hope it will inspire researchers to find a way to return every Parkinson’s patient to a career they love—or better yet, never leave it in the first place.
Todd Sherer is CEO of The Michael J. Fox Foundation for Parkinson’s Research.