An interview with Russell Joye on My Dad Fought the Good Fight on October 14, 2023 by George Ackerman, Ph.D, J.D.
Biography
My father was diagnosed with Parkinson’s disease in 2010. While working in the healthcare technology space, I came across a body of research surrounding external cues to help PD patients walk more efficiently. This was the impetus for building Mickey’s, a company that developed athletic clothing with sensors on board to deliver vibrational cues to PD patients while walking. We were not able to successfully fundraise, but I was introduced to the incredibly inspiring global community of PD patients, caregivers and researchers, relationships that I cherish to this day (even had the opportunity to travel to Kyoto for the World Parkinson Congress in 2019).
Please tell me a little about your background.
I left medical school in 2015 to work in the healthcare technology space and began pursuing PD product development after witnessing my father’s increasing struggles with movement.
Can you tell me more about your advocacy?
Mickey’s afforded me the opportunity to work with movement disorders researchers at Columbia University and Mt. Sinai, as well as occasional sessions with the legendary Bas Bloem from Radboud University in the Netherlands, on our prototype device and studies that would be executed to examine efficacy and safety of our product. I had the chance to get to know folks like Bruce Ballard and John Humphries, both wonderful and incredibly well-traveled patient advocates in the U.S., through leadership teams at the Parkinson’s Foundation. Most importantly, I learned deeply about the experience that my father was going through in real time, which allowed us to communicate well up until the moment he passed in 2023.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I got involved because of my father and my interest in medicine (decided to leave medical school after semester one but who’s counting?). In an odd way, I’m forever grateful that this great man in my life came together with an academic interest to introduce me to the world of PD. I knew nothing about this community before that time!
What type of goals do individuals with Parkinson’s have when working with you?
I no longer work directly with PD patients unfortunately, but the goal when I did work with patients was improved walking ability.
What effect can your advocacy have on an individual with Parkinson’s?
In hindsight, had we successfully developed the product, we would have been able to help PD patients walk more efficiently!
What would you like to see as a future goal for your advocacy?
Continuing to build relationships in the PD community and eventually getting involved with large advocacy groups to advance the effort to find a cure for PD.
What events do you participate in?
Small donations, fundraising “walks” with advocacy groups (MJFF, etc.)
How can someone get in touch?
russell.joye@gmail.com
In your opinion what is the key to effective advocacy?
Building relationships, nurturing those relationships, and growing a network of genuine relationships over time.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Thank you for showing the rest of the world true courage, grit and bravery every single day. We can all agree the world needs it!