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Glens Falls man plans to pedal 8,000 miles to raise money, awareness of EB

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GLENS FALLS -- Another day means more miles on two wheels, for Robb Freed.

Freed, a Glens Falls resident, says he's always enjoyed biking. Now, he does it in memory of his son.

“Drake E. was born with a condition called Epidermolysis Bulosa, EB for short," Freed said.

Freed's son was born in August 2007. He says the first thing the doctor noticed was skin missing from his fingertips.

"The first thing that she said was 'I've never seen that before,’” Freed said. “I knew something was not right."

Freed and Drake E.'s mom were told their baby wouldn't live a full year.

"I look back at that point and say that's where my life changed."

The blue-eyed baby lived 13 months. Freed says biking became therapeutic after his son's passing -- and he grew to love it.

"I’m going to do something with this talent I have, with this love of biking, to make a difference."

Freed thought up “The Big Ride for EB”. In February, he'll begin biking 8,000 miles -- from Florida to Oregon, and back across the country to New York. He and two others driving along him will make stops in towns and at children's hospitals along the way.

He's working with an EB research association to raise money to go to funding and families impacted by EB -- but he says besides money, he hopes to raise awareness.

"We don't really want to ride through towns and wave, we actually want to talk to people and meet them, and spread the word,” Freed said.

Freed bikes every day to prepare for his trip, and he says, so far, over $4,000 dollars has been raised.

"At some point, there's going to be one dollar that pushes it over the edge, and says we don't have to worry anymore, there's a cure for EB. Could I be part of that? That would be awesome,” Freed said. “But a lot of it is just hope, awareness, and giving someone something to look forward to."

Robb Freed's ride will kick off on February 28th - which is also Rare Disease Day.

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