While Steve DeWitte is new to The Michael J. Fox Foundation’s (MJFF) Patient Council, he is not new to patient advocacy. Although his involvement started small, “it quickly grew,” he says. “I started to receive notes of thanks from fellow People with Parkinson’s (PWP) for my efforts on their behalf.” His outreach expanded, once he realized he was making a difference that benefitted others.
Shortly after his Parkinson’s diagnosis in 2005, Steve established a support group for young-onset patients in Connecticut. Membership has grown from eight members in 2006 to more than 150. Alongside a growing number of dedicated volunteers, the Parkinson Young-Onset Support Group of Connecticut incorporated as a 501(c)3 charity last year, and launched a second support group.
Steve is actively engaged in a number of Parkinson’s organizations, including MJFF. He is a Connecticut Congressional liaison for the Parkinson’s Action Network (PAN), a member of the Parkinson’s disease Federation’s People with Parkinson’s Advisory Council, and an ambassador for the 2013 World Parkinson Congress — after attending the 2006 and 2010 sessions. Prior to joining MJFF’s Patient Council, Steve co-chaired two Foundation Research Roundtables in New Haven and participated in Team Fox through several local walk-a-thons.
“My involvement with the Fox Foundation and other organizations enables me to see what potential treatment options are down the pike for patients,” he says. “And I’m very optimistic about what I see. What PD patients are looking for is hope. I get to share this good news with them.”
One of Steve’s hopes for the Patient Council is to help assesses priorities, and help mobilize fellow PWP to better serve the mission. An advocate for increasing participation in clinical research, he has volunteered for more than a dozen PD trials and is enthusiastic about Fox Trial Finder. He’s eager to work with MJFF to enhance this tool and patients’ access to trial sites.
As a Person with Parkinson’s, he greatly appreciates that the Foundation is “in it to go out of business — and how they live that.” When asked what advice he’d give to someone who has just been diagnosed, he recalls a piece of wisdom he once received: “Don’t worry. Just keep the faith.” Such optimism has helped him, and those he comes in contact with, have a better day on the journey they share.