CHARLOTTESVILLE, Va. (CBS19 NEWS) -- A New York man who’s riding his bike across the country and back to raise awareness about a rare disease that killed his infant son stopped in Charlottesville on Monday morning.
Robb Freed’s son Drake E. died of a disease called epidermolysis bullosis, or EB, when he was 13 months old. The disease makes the skin extremely fragile, causing open wounds and extreme pain. It can also affect internal organs. There is currently no cure.
Freed is riding from Yorktown to Seattle, Washington, making stops along the way to visit research centers and children living with the disease.
He's raising money, but he says greater awareness of the illness is the most important thing.
“The awareness is going to be a huge part in eventually finding a cure, and eventually better treatments,” he said.
Freed expects to ride more than 8,000 miles on a bike called Rowan, named after another child with EB. He hopes to finish back on the East Coast by Halloween. This is the second time he's done the cross country ride.
For more information on epidermolysis bullosa and Robb Freed’s journey, see the link in the Related Links box.