With the last 1 percent of his vision, Jeff Benelli is determined to make a difference in a unique way by running four marathons in five weeks.
Benelli, 48, was diagnosed with a rare inherited disorder that causes progressive vision loss called Choroideremia when he was 27. It started with night blindness during his teenage years and he started to lose vision in his 20s. By 50, he is expected to be fully blind.
“In public I have to have my wife or one of my two boys guide me, and I am not functional on my own,” Benelli said. “The only time I feel independent is when I’m running marathons because I still have enough central vision to see shoulders and heads bobbing up and down. That is just enough for me to run these marathons on my own.”
From 2005 to 2010 he ran six marathons and raised nearly $170,000 for the Choroideremia Research Foundation which is preparing for its first human clinical trials this September through the University of Pennsylvania.
He will start with Waddell & Reed Kansas City Marathon on Oct. 18 and finish with the Philadelphia Marathon on Nov. 23.
“There’s almost a poetic story in my mind to run a marathon in Philadelphia that starts less than two miles away from the very place where these clinical trials will be happening within weeks of when they operate on the first patient,” Benelli said. “I thought, one marathon won’t quite do it. If I can bump that up and do something more spectacular, that would bring not only media attention but push people within the organization to get more involved.”
To reach Kathleen Gier, call 816-234-4875 or send email to firstname.lastname@example.org.