A team of cyclists that left Seattle 33 days ago on a cross-country to trip raise awareness of a rare muscular dystrophy-like disorder had no problem with the Nevada heat. Or with Colorado’s Rocky Mountains.
When they left Nebraska earlier this week, they descended into what they thought would be an easy ride across Kansas’ flatlands for a Wednesday arrival in Kansas City.
They had no such sunny luck in the Sunflower State. On Monday, they ran smack into a prairie thunderstorm. All along was the wind.
“Kansas — the people in Kansas have been absolutely spectacular. So wonderfully generous … But the weather? Wow! That’s all I’m going to say. Wow!” said Frank Carbone, the 47-year-old team leader from Brooklyn, N.Y., heading a coast-to-coast ride for the Chris Carrino Foundation for FSHD. Carrino is the Brooklyn Nets’ radio play-by-play announcer.
The wind, Carbone said, “is fast and furious and comes from every direction.” He continued, “Everyone said Kansas is flat. Not so. Western Kansas? We did more climbing in western Kansas than we did in the Rockies. It’s been a challenge the entire way.”
The challenge on Wednesday put the fund-raising cyclists about 70 miles behind schedule, causing somewhat of a glitch. The team, which spent Tuesday night in Topeka, had been expecting to spend that night in Lawrence and then pedal in for a noon lunch at the University of Kansas Health System’s campus at 4330 Shawnee Mission Parkway.
Instead, to make the luncheon, the cyclists were forced to drive in from Topeka, packed into the assistance van that is trailing them on their route. Afterward, they were scheduled to drive back to Topeka and resume their cycling trip to Kansas City, with the expectation of reaching Kansas City late Wednesday night before heading to Sedalia on Thursday.
“I really want to make this clear,” Carbone said. “The people have been so unbelievably warm, hospitable, generous …While the wind has been a challenge, the weather has been a challenge, the great people of Kansas have helped us get here and definitely will help push us back home.”
The lunch at KU was scheduled to meet physician Jeffrey Statland, considered one of nation’s leading researchers into FSHD. The disorder, which afflicts about 1 in 15,000 people (one study has it at 1 in 8,000) is neither fatal nor life-shortening. It is nonetheless one of the most common forms of muscular dystrophy, with its initials standing for the difficult-to-pronounce name fascioscapulohumeral muscular dystrophy.
The tongue-twisting name speaks precisely to the core effects of the disorder, which includes withering and sometimes contorting the muscles of the face (fascio), the winglike muscles of the back (scapulo) and also upper arms (humeral). The disease can weaken leg muscles to make a wheelchair a necessity.
Earlier this month, Statland’s group received a $2.4 million grant from the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, to study the progression of the disease in 150 people over an 18-month period.
Better understanding the disease, Statland said, can only help in running clinical trials of medications and “maybe help get a cure or at least a therapy that will help people.”
The cross-country cycling trip, which began on May 27, is expected to take 54 days and conclude July 19 in Brooklyn, home of the Nets. Carrino has been the team’s radio voice since 2001.
Carrino, now 47, began the non-profit foundation in 2011 to raise money and awareness for FSHD research. He said he first began feeling the effects of what he later came to know was FSHD when he was a student at Fordham University.
“That’s when I started to notice something going wrong,” Carrino said by phone from his home in Marlboro, N.J. “Growing up, I was a basketball player and I was a tennis player.
“I started realizing in college, when I’d go to a pickup game, that I was just slowing down. I would be walking on campus and trip on a cobblestone and go down.”
Fresh out of college, he was diagnosed. “I’m 22, 23, and it seems to be getting worse,” Carrino said. “I’m thinking they’ll prescribe a vitamin of some kind. (My doctor) says to me, ‘You have some kind of muscular dystrophy.’”
Carrino said it was later a relief to find out that his FSHD was not fatal or life-shortening, but he also knew that it was progressive, with no effective cure or treatment, and that it would gradually weaken many of his muscles.
He said he vowed early on not to let the disease stop him from doing the things in life he wants to do.
“For me, it’s constantly on my mind from the minute I wake up. I have to use all the strength I have and contort my body just to get up out of bed and get dressed.”
The goal of the cross-country trip was to raise $100,000. Although only about $20,000 has been raised, awareness also matters, Carrino said.
Carbone, the cycling team leader, said he came to know Carrino when he was coaching the broadcaster’s niece in basketball at New York’s St. Joseph’s College.
“Watching him, he’s actually been an inspiration, not only to me, but to our entire team ,” Carbone said. “We watch his daily struggles. We watch what he goes through just to walk from here to the sidewalk, just for him to try to try to climb a few steps of stairs, just for him to just climb into a car…
“So, for us, even though 4,200 miles on a bike — dealing with wind, dealing with mountains, dealing with everything we’ve had to manage and overcome — is just a small hurdle compared to everything they’re dealing with everyday.”
Fifteen hundred miles to go. Next stop: Sedalia.