20 The Power of Action
Community in Action
While the pandemic upended daily life for many people , our Parkinson ’ s community remained constant in their outreach and dedication to each other .
Dilcia Lewis , 44 , of Monroe , New Jersey , ran the 2019 NYC Marathon with Team Fox to honor her late father . Now , she reflects on the next generation :
“ Running was how I grieved — I would hit the pavement and run for miles — I laughed , I prayed , I ’ d cry , but it was a way to connect and remember my dad . Being able to run the NYC Marathon , achieve my fundraising goal and have my daughters there was important to me . Today , I see the younger generation stepping up . My oldest daughter who ’ s 16 and a girl scout is preparing to raise awareness for Team Fox .”
Kerry Howard , 66 , of Juneau , Alaska , shares her experience as a woman living with Parkinson ’ s and her role as an active public policy advocate :
“ Often I think people associate Parkinson ’ s disease with men more than women . It ’ s wonderful to connect with other women through events like the Parkinson ’ s Policy Forum and see what they bring to the experience . There ’ s definitely an emotional part to the disease that I can see more often expressed by women than men . To be able to share the facts and statistics with lawmakers is one thing , but to bring that human bent and emotion to advocacy is another .”
Sean Johnson , 44 , of New Orleans , Louisiana , is a care partner for his father , Reverend Ernest Johnson , 85 , whom he calls his “ number 1 man and toughest fighter .” Sean shares how he and his family are navigating the disease together :
“ He lives with my mom ( married 40 years ), but I ’ m there with him every day . I make him walk . A couple of times throughout the day . I make sure he ’ s busy . Gotta remind him to take his medicine . But he ’ s healthy as a fox , the only thing he has is Parkinson ’ s . He ’ s more healthy than I am !”
Share Your Story with Us
The Foundation is seeking to grow its community in order to share diverse stories from anyone touched by Parkinson ’ s . Email
shareyourstory @ michaeljfox . org and tell us about yourself . You could be featured in future communications .