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Man bikes thousands of miles to honor son and raise money for rare disease

Robb Freed is biking 8,000 miles in honor of his 13 month son who died of Epidermolysis Bullosa. A rare skin disease that causes severe blisters.

Robb Freed's son was born with the disease. The 13-month-old died from it in 2008.

Since then he has become an advocate for other families. He says not only is his eight-thousand-mile journey helping others, it's also helping him heal.

Freed's trip started on March 26th in Jacksonville, Florida. He will bike all the way to Astoria, OR and then make his way back to the East Coast. Ending his journey in Coney Island, NY.

"Epidermolysis Bullosa is a pretty complex disease there are five types and thirty-one different sub types," Debra for America Executive Director Brett Copeland says.

He's seen firsthand through his 10-year-old daughter, just how bad the skin disease.

Copeland says 1 in 20,000 people are born with it the disease. There is no cure and managing it can be costly.

That's why Freed says his mission is so important.

To learn more about Epidermolysis Bullosa or Debra for America click here.

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