“So, what does having Parkinson’s mean for my life?,” said Allan Hugh Cole Jr., PhD, Team Fox member and TCS New York City Marathon runner as he shared his journey in a new documentary, “Empowered by Parkinson’s.” “What will it teach me about myself and other people? About my values and my priorities. About disappointment and regret. About a life lived more intentionally and with purpose. So, what good can I do because I have Parkinson’s? These questions push us forward and can also be constructive.”
“Empowered by Parkinson’s,” half-hour documentary produced by Connecticut Public Television (PBS), brings together diverse stories from people living with Parkinson’s disease (PD), their families, experts and scientists who are all on a journey to find the latest in treatments and research. Created by documentarian André Costantini, the film takes an in-depth view into the different ways those living with Parkinson’s and their families found resilience. On why he wanted to create the film, André shared, “It really is my hope that people with Parkinson’s who see the film will feel inspired. There are actually so many things they can do to make a difference in their own lives, and also inspire other people.”
With film interview subjects Todd Sherer, Allan Hugh Cole Jr., Carol Whitlach and many more, the “Empowered by Parkinson’s” documentary — fueled a vast array of stories from Parkinson’s community members across the country including a few individuals from The Michael J. Fox Foundation (MJFF).
MJFF CEO Todd Sherer, PhD, explained how Fox Insight — the Foundation’s online clinical study which collects data on the lived experience of Parkinson’s — is powering critical research through participation from those living with and without the disease:
“We also make the data available to the research community so it can be mined in real time to get insights into the disease.”
Carol Whitlatch, a Fox Insight study participant and research scientist at Cleveland’s Benjamin Rose Institute on Aging, talks about her own full circle experience from being a researcher to receiving her own diagnosis:
“The irony is not lost on me or my family. It’s been a challenge, but it’s something my family has managed quite well. I’m not going to sit back and let this cover us and make us sad, but find our peer group, find our people and help them as well. I wouldn’t wish this disease on anyone, but there’s a lot of gifts from it and I want to make the most of that to help other people.”
Interested in participating in genetic research? MJFF’s online clinical study Fox Insight is accelerating breakthroughs by capturing the experiences of people with and without Parkinson’s. Through a collaboration with consumer genetics company 23andMe, people with Parkinson’s who join Fox Insight can access the 23andMe Health + Ancestry Service at no cost and add their genetic information to the study. Register at foxinsight.org.