LOUISVILLE, Ky (WDRB) -- Going for a bike ride has taken on a whole new meaning for Robb Freed.
Freed, from New York, made a stop in Louisville on Saturday as he bikes his way across the country to raise awareness for Epidermolysis Bullosa, also known as E.B.
Described as "the worst disease you've never heard of," E.B. is extremely painful and causes skin to scab and slough off.
For Freed, the ride is personal.
"About 11 years ago, I had a son that was born with this rare genetic skin disease," Freed said, referring to his son, Drake, who died from E.B. at just a 13-months-old.
Since then, Freed has been going state to state talking with families also affected – one of those in Louisville.
Leslie Rader lost her daughter to E.B. at nearly eight-months-old. The rare disease is now the subject of a Amazon Prime documentary, which is following Freed across the country.
"That means a lot to me, because as an E.B. parent I wanted the same thing in the memory of my child," Rader said. "I think Robb is amazing for making this trek across the United States and back – twice. That is just phenomenal."
The ride is no easy task. Freed told WDRB News he often bikes 50 miles a day and burns up to 4,000 calories in the process.
Everything Freed uses, including his tent, is strapped to his bike and by his side 24 hours a day. He must precisely plan stops to eat and rest, too.
Some hotels donate nights so Freed can get a shower and good rest. Sponsors are also helping Freed accomplish his mission – a different route than the cross-country journey he did last year.
Obstacles range from snow-capped mountains to 90 degree heat, but Freed said he owes it to his son and others to press on until a cure can be found.
"I feel it needs to be done," said Freed, who plans on finishing his journey around Thanksgiving.
"I have the ability to do this; I am going to do it."
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