FSHD cyclists complete cross-country journey
by Benjamin Fang
Jul 25, 2017 | 1228 views | 0 0 comments | 70 70 recommendations | email to a friend | print
Frank Carbone raises his fist as he nears the finish line at the Barclays Center.
Frank Carbone raises his fist as he nears the finish line at the Barclays Center.
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The C2C4FSHD team completes its cross-country journey.
The C2C4FSHD team completes its cross-country journey.
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Supporters who tagged along for part of the ride include Brooklyn Nets Head Coach Kenny Atkinson.
Supporters who tagged along for part of the ride include Brooklyn Nets Head Coach Kenny Atkinson.
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The bike team takes a group photo in front of their final destination, the Barclays Center.
The bike team takes a group photo in front of their final destination, the Barclays Center.
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The cross-country trip raised money and awareness for the Chris Carrino Foundation for FSHD.
The cross-country trip raised money and awareness for the Chris Carrino Foundation for FSHD.
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Frank Carbone held up one fist in the air as he rode to the finish line, a group of cyclists following closely behind.

After 4,200 miles and a grueling 54 days on the road, the team of bikers raising awareness for a form of muscular dystrophy finally came home to Brooklyn.

Last Wednesday afternoon at the Barclays Center, Carbone and his crew completed their cross-country trip, which began two months ago in Seattle. They received cheers from supporters who came to greet them at the end of their long journey.

“It was a dream and we made the dream become a reality,” Carbone said. “We had some falls and scrapes, we had a lot of sweat and a lot of tears of joy that we actually did it.”

The bike tour raised awareness for facioscapulohumeral muscular dystrophy (FSHD), a disease that weakens and degenerates the muscles of the face, shoulders and upper arms. It affects approximately 1 in 20,000 people, but has no cure and no treatment.

The team rode on behalf of the Chris Carrino Foundation for FSHD, a nonprofit organization created by the longtime Brooklyn Nets broadcaster who was diagnosed with the disease in his 20s. Since its founding in 2011, the foundation has raised $500,000 to advance FSHD research.

Carrino, who was among those cheering on the cyclists at the Barclays Center, called the cross-country trip “an amazing feat.”

“Their efforts really did a lot for the cause,” he said. “It was a great opportunity for us to show the FSHD community around the country that there’s people out there that care about them and are willing to go through great feats to help them.”

“If we help 1,000 people, 100 people or just one,” he added, “it was all worth it.”

The cyclists crossed 15 states in their trip, meeting with doctors, researchers and people with FSHD along the way.

“They are the true heroes. They are the ones who are working everyday to try to find a cure,” Carbone said. “We got out there and rode our bikes for a couple months. They’ve been spending years trying to find a cure, much like the people who suffer the disease, who’ve been suffering for years.”

The team faced numerous challenges throughout their journey. John Cielepak, a Greenpoint native who completed the entire trip, said heat and wind were their biggest enemies. They were also interrupted by severe thunderstorms and hailstorms.

For Carbone, the wind in the midwest was relentless.

“It really seemed like it was against us everyday. The wind never stops,” he said. “We consider wind an invisible enemy. A mountain you can't see. It’s tough, and you have to get up there, but you can at least see the end.”

The other issue they faced was the sheer magnitude. Carbone said they rode 95 to 100 miles a day for two months. The route, 4,200 miles, is double the length of the Tour de France, which is 2,100 miles.

But what kept Carbone going was knowing that he was making an impact, he said.

“We may be hurting a little bit, our legs might be hurting, but these people are suffering everyday,” he said. “They’re dealing with the disease everyday. So in some small way, if our efforts could motivate them and could give them hope, that’s the key.”

Cielepak constantly thought back to Carrino’s speech at the beginning of the trip as his motivator.

“Just us fighting through everything, the adversity, just like he’s fighting through the disease,” he said. “Hearing Chris’s voice in my head kept me going through.”

The best moment of the trip for Carbone was meeting 10-year-old Lincoln from Altoona, Pennsylvania, who is also afflicted with the disease. Lincoln rode two miles with the team, he said.

“He was peddling his heart out, and we were right there with him,” Carbone said. “I hope we made one of the special moments of his life happen.”

“Lincoln got such a thrill out of it,” Carrino added. “To know that he’s 10 years old, he has this degenerative muscle disease, but there’s people out there willing to go through all these efforts to fight for him. How can you put a price tag on that?”

As the cyclists begin the recovery from their trip, they’re already thinking about the future work that will be needed to continue the research for treatment and a cure.

Cielepak, who said he was “pumped” to be back home with his friends and family, said they created a good foundation of social media about the disease and expanded the foundation’s network.

“We just have to build off that, and who knows?” he said. “Maybe some more journeys to come.”

Carbone, who has completed a cross-country bike trip once before, said he’ll always be interested in the next project or “another mountain to climb.”

“Whatever it might be, we’ll try to do it,” Carbone said. “As long as it can help somebody else and give someone the satisfaction of accomplishing something great, we’re all in.”
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