Biking for a cause

Bicyclist Robb Freed from New York State is making his second double-transcontinental ride this year to raise awareness for the skin disease epidermolysis bullosa. He reached Chanute Tuesday on the westbound leg of his journey.

GREG LOWER

A bicyclist on a double-transcontinental journey reached Chanute Tuesday to raise awareness for a rare skin disease.

Robb Freed started Tuesday in Girard and spent the night in Chanute on a round-trip cross-country journey for epidermolysis bullosa. This is the westbound leg of the trip and he planned to travel to Eureka by this evening, depending on flood issues.

This is a solo ride, but he is following one of the routes of the Trans America Bike Race, which left Oregon last week and is expecting to go through Kansas and Chanute starting sometime next week. Taking the route allows him to locate places to stay overnight, even though he is not part of the race.

“It’s full of resources,” Freed said.

He said once the race leaders reach Kansas, the middle of the pack will arrive over the next week and the remaining stragglers could go through over the next two months.

Freed began his trek on April 24 in Yorktown, Va., going to Seattle, Wash. and back. 

This is the second year Freed, from Glens Falls in upstate New York, has pedaled across the nation and back. He plans to reach Seattle the first week of July and be home for Thanksgiving. Along the way, he is stopping at hospitals and visiting families affected by the disease.

Epidermolysis bullosa is a connective tissue disorder with many genetic variations and symptoms. All forms of EB share the prominent symptom of skin that blisters as a result of minor friction or trauma. There is no cure or treatment other than daily wound care and pain management, which can cost over $10,000 per month in supplies that often are not covered by insurance. One in 20,000 babies are born with EB each year in the US.

Freed’s son died at the age of 13 months from the disease.

Last year, Freed went from Florida to Seattle and then to Coney Island. He plans to return through Chanute, but may change the latter part of the eastbound route.

He does not plan to make the long rides over the next two years, while another son completes high school. But he is thinking ahead to 2022.

“I may do something really big,” he said. “Going across the country’s not so rare.”

He is interested in starting his own non-profit for the cause. He does not have a figure on how much the two rides have raised in funding.

“It’s more about awareness,” Freed said.

He is making the trip on a Trek 520 touring bike, a common type for cross-country rides, but he has made some small modifications.

“The bikes that do this are abused,” Freed said.

The bike made last year’s trip and was donated to a hospital, but then loaned back for this year’s ride.

Information on the ride and on epidermolysis bullosa is available at TheBigRideforEB.com and people also can donate to www.debra.org

 

 

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