These are two different projects of Michael J. Fox Foundation (MJFF):
–Fox Trial Finder: A database of potential volunteers for Parkinson’s research.
–Fox Insight: A quarterly survey of Parkies’ experience with the disease.
I am a big fan of MJFF – ya gotta love any charity that wants to go out of business. They recently adopted a new slogan: “Here. Until Parkinson’s Isn’t.” Michael J. Fox founded the organization in 2000, and the organization has since raised a mind-boggling amount of dough for Parkinson’s research. I couldn’t find the cumulative amount, but just for 2018, they plowed over a $100 million into research. Since 2014, MJFF has helped push 14 new treatments for motor and non-motor symptoms of Parkinson’s through the complicated process to get FDA approval. (In contrast, before 2000, new Parkinson’s therapies were few and far between since levodopa was introduced in 1967.)
But back to your New Year’s resolutions. I signed up for Fox Trial Finder and Fox Insight shortly after I got my diagnosis in 2012 because I wanted to do something. For Fox Insight, I get a reminder in my email every quarter or so and am now up to my 17th study visit. The survey usually takes less than an hour and includes questions about my motor and non-motor symptoms, cognition, depression, current therapies, and other relevant Parky data. My personal data is of course kept confidential and de-identified.
Having a body of data over time and across over 43,000 Parkinson’s patients is obviously valuable to researchers of a disease that varies so much from patient to patient. Even if you don’t have Parkinson’s, you can sign up with Fox Insight as a control.
And same for Fox Trial Finder – both Parkies and non-Parkies are needed to sign up so we can test new Parkinson’s drugs. Here’s the pitch from the Fox Trial Finder signup page: “Clinical trials are a final and crucial step on the path to developing better treatments for Parkinson’s patients today. Around the world, between 40% and 70% of trials face delays because of a lack of volunteers.” Volunteers – that means you (and me). And this is pretty easy: You provide some basic info (e.g., how far you are willing to travel, when was your diagnosis) and then you can browse current trials. MJFF will also periodically send you potential matches. It’s a good idea to check in on new trials every so often – say, like when you’re getting ready to see your neurologist. That way, if you see a trial that looks like a good fit, you can ask your doctor about it. Remember, those drugs aren’t going to test themselves.
Happy New Year, and here’s to more progress fighting Parkinson’s in 2020!