Fleed Rides to Raise Awareness of EB

Robb Fleed. (Photo by Pat Blair)
Robb Fleed. (Photo by Pat Blair)

Robb Fleed is riding his bicycle across the country to raise awareness of a very rare skin disease that can be fatal.

On a stop in Sheridan this weekend, he said that's one purpose of The Big Ride for EB.

The families are those that have children born with the rare skin disorder called epidemolysis bullosa, a group of genetic conditions that result in easy blistering of the skin.

Fleed said his own son was born with EB about 11 years ago and died because of the condition 13 months after he was born.

Fleed said the current bike ride started out as kind of joking around, but the joke turned serious nearly four months ago, when he set out from Jacksonville Beach, Florida, and headed west.

He traveled all the way to Oregon and Seattle, Wash., then turned around and is now headed home to New York – specifically, he said, to Coney Island where he plans to end the ride.

So far, he said, he's been on the road 128 days. Fleed said mileage varies, from as little as 20 miles a day to 100, but he tries to stay in the 50 to 70-mile range.

Fleed said EB isn't always fatal, and there are some adults who have the condition. But he said the life expectancy of those with EB is shortened because of the condition, and those who reach adulthood are those who have a milder form.

He said the variation among those with EB is what makes the condition difficult to deal with, because what works to treat one person won't necessarily work with another.

Fleed said he'll spend Sunday night in Sheridan and plans to be on the road Monday for Buffalo. From there, he said he'll decide whether to head toward South Dakota or south to Denver.

Those interested in Fleed's journey can follow his progress on Facebook at “The Big Ride for EB.”

View another photo below.

Fleed with the bike that's kept him on the road for 128 days. (Photo by Pat Blair)
Fleed with the bike that's kept him on the road for 128 days. (Photo by Pat Blair)

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