A To-Do List for Parkinson’s Researchers: Scientific American

"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. 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' ... 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 ..."