Jeff Benelli may be legally blind, but he’s still got a powerful vision.
He can see a future in which choroideremia, the rare genetic disorder that is stealing his eyesight, is extinct. In fact, he’s literally racing toward that future, running in marathons to raise money for the Choroideremia Research Foundation.
“Things have changed a little bit,” Benelli said in a telephone interview from his Overland Park home. “I’ve always been raising money for research, now it’s no longer research because they’re getting so close. They’ve got a three-step plan and just need the money to implement it.”
He added that the money needed is very small compared with the millions spent on other diseases.
“They’re talking about $3 million,” Benelli said. “This is so do-able. Within two or three years, we should be ready for clinical trials.”
Benelli, son of Peggy and Martin Benelli Jr., Pittsburg, was diagnosed with choroideremia (CHM) when he was 27 and told that he would be completely blind by the time he was 50. He’s now 44, and has less than a 2-degree visual field. At a normal conversational distance, he can only see a small portion of a person’s face.
“Many of the things normal people take for granted, like driving, walking independently or playing catch with my sons Jakob and Jordan, I can no longer do,” Benelli said.
But he can run. His first marathon was the Okanagan International Marathon in Kelowna, British Columbia, Canada, in October 2005.
“My next was the Outer Banks of North Carolina Marathon in November 2007,” Benelli said.
That was followed by the Boston Marathon in April 2008 and the Kansas City Marathon in October 2008.
Next will be the Bank of America Chicago Marathon on Oct. 11, a 26.2-mile race through downtown Chicago.
“There will be 45,000 people in the marathon and probably my biggest fear is that it’s tough for me to navigate around people,” Benelli said. “I’ve cleared it so I can line up near the front. I can only see a few steps ahead of me, so I’ll follow the guy in front of me. I think that I’m going to do it in three hours.”
His poor vision poses many challenges for him. He recently got lost and couldn’t find the track he was supposed to run on.
“It took me 20 minutes to find my way, and then about 100 geese landed on the track,” Benelli said. “There I was trying to dodge geese.”
Added to all this is the fact that he has to work his many miles of practice into a busy schedule. A graduate of St. Mary’s-Colgan High School, he holds bachelor’s and master’s degrees in mathematics from Pittsburg State University, and is an actuarial analyst in the insurance industry.
“I run six to 12 miles, then at 6:30 a.m. I start my day like everybody else,” Benelli said. “I have a job, a wife and two kids, and tacked on to that is 60 miles of running each week. I do not think the travesty of blindness alone would ever have been enough for me to train as rigorously as I have for five marathons. I think it is the uniqueness within CHM that has fueled my efforts.”
The condition affects very few people, only about one out of every 50,000 to 100,000. Almost all of those affected are male. Women can be carriers of the genetic defect and may develop some vision problems, but very rarely become blind.
“The very ‘burden’ of the rarity of CHM, combined with the ‘high ranking’ of a disease that could be cured has pushed me each time to sign up for my next marathon,” Benelli said.
The fact that the cure may cost only around $3 million means those who contribute to the battle against CHM are making a big difference.
“We as a society are presented with a very unique and wonderful opportunity,” Benelli said. “We can ‘extinct’ a disease. My network, made up of people in Pittsburg, relationships I’ve made through work and friendships up here, has been one of the largest contributors.”
The new treatment, he said, will not be able to restore the eyesight that has been lost, but will prevent further loss.
“If the treatment is available within the next three years, I can keep a little vision and see my sons’ faces,” Benelli said. “If the cure is five to seven years out, probably not.”
Even then, he will have joy of knowing that children with the genetic defect leading to CHM will never have to suffer from it.
“I believe that all who put forth their support right now will look back in the next few years and say, ‘I, as an individual, played a major role in wiping out a disease from the world’,” Benelli said. “Guess what, CHM — you lose!”
Anyone wishing to donate may do so online at www.CureCHM.org.
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Jeff Benelli may be legally blind, but he’s still got a powerful vision.
He can see a future in which choroideremia, the rare genetic disorder that is stealing his eyesight, is extinct. In fact, he’s literally racing toward that future, running in marathons to raise money for the Choroideremia Research Foundation.
“Things have changed a little bit,” Benelli said in a telephone interview from his Overland Park home. “I’ve always been raising money for research, now it’s no longer research because they’re getting so close. They’ve got a three-step plan and just need the money to implement it.”
He added that the money needed is very small compared with the millions spent on other diseases.
“They’re talking about $3 million,” Benelli said. “This is so do-able. Within two or three years, we should be ready for clinical trials.”
Benelli, son of Peggy and Martin Benelli Jr., Pittsburg, was diagnosed with choroideremia (CHM) when he was 27 and told that he would be completely blind by the time he was 50. He’s now 44, and has less than a 2-degree visual field. At a normal conversational distance, he can only see a small portion of a person’s face.
“Many of the things normal people take for granted, like driving, walking independently or playing catch with my sons Jakob and Jordan, I can no longer do,” Benelli said.
But he can run. His first marathon was the Okanagan International Marathon in Kelowna, British Columbia, Canada, in October 2005.
“My next was the Outer Banks of North Carolina Marathon in November 2007,” Benelli said.
That was followed by the Boston Marathon in April 2008 and the Kansas City Marathon in October 2008.
Next will be the Bank of America Chicago Marathon on Oct. 11, a 26.2-mile race through downtown Chicago.
“There will be 45,000 people in the marathon and probably my biggest fear is that it’s tough for me to navigate around people,” Benelli said. “I’ve cleared it so I can line up near the front. I can only see a few steps ahead of me, so I’ll follow the guy in front of me. I think that I’m going to do it in three hours.”
His poor vision poses many challenges for him. He recently got lost and couldn’t find the track he was supposed to run on.
“It took me 20 minutes to find my way, and then about 100 geese landed on the track,” Benelli said. “There I was trying to dodge geese.”
Added to all this is the fact that he has to work his many miles of practice into a busy schedule. A graduate of St. Mary’s-Colgan High School, he holds bachelor’s and master’s degrees in mathematics from Pittsburg State University, and is an actuarial analyst in the insurance industry.
“I run six to 12 miles, then at 6:30 a.m. I start my day like everybody else,” Benelli said. “I have a job, a wife and two kids, and tacked on to that is 60 miles of running each week. I do not think the travesty of blindness alone would ever have been enough for me to train as rigorously as I have for five marathons. I think it is the uniqueness within CHM that has fueled my efforts.”
The condition affects very few people, only about one out of every 50,000 to 100,000. Almost all of those affected are male. Women can be carriers of the genetic defect and may develop some vision problems, but very rarely become blind.
“The very ‘burden’ of the rarity of CHM, combined with the ‘high ranking’ of a disease that could be cured has pushed me each time to sign up for my next marathon,” Benelli said.
The fact that the cure may cost only around $3 million means those who contribute to the battle against CHM are making a big difference.
“We as a society are presented with a very unique and wonderful opportunity,” Benelli said. “We can ‘extinct’ a disease. My network, made up of people in Pittsburg, relationships I’ve made through work and friendships up here, has been one of the largest contributors.”
The new treatment, he said, will not be able to restore the eyesight that has been lost, but will prevent further loss.
“If the treatment is available within the next three years, I can keep a little vision and see my sons’ faces,” Benelli said. “If the cure is five to seven years out, probably not.”
Even then, he will have joy of knowing that children with the genetic defect leading to CHM will never have to suffer from it.
“I believe that all who put forth their support right now will look back in the next few years and say, ‘I, as an individual, played a major role in wiping out a disease from the world’,” Benelli said. “Guess what, CHM — you lose!”
Anyone wishing to donate may do so online at www.CureCHM.org.
