One man is riding his bicycle cross-country to raise awareness for a rare disease, that took the life of his 13-month-old son and some call "the worst disease you never heard of."
Robb Freed started his journey on his bike, he named "Rowan", in Jacksonville Beach, Florida. He is currently in Clarendon and on his way to Amarillo. He is expected to arrive this afternoon and stay through Thursday.
He is heading to Astoria, Oregon and then he will pedal all the way to Coney Island, New York.
He says this trip is all about raising awareness and funds for those who have a rare genetic skin disease. Epidermolysis Bullosa, better known as EB, is a group of genetic conditions that cause the skin to be very fragile and to blister easily. Blisters and skin erosions form in response to minor injury or friction, such as rubbing or scratching.
"I'm doing it because I want to help families that have children, that have EB, the raise money part goes to Debra of America, which is a nonprofit in New York City, they provide care, wound care, and supplies to families that have children, that have EB," Cyclist Robb Freed said.
Freed said some families can spend between $10,000 and $15,000 a month in supplies alone.
He also said when his son passed away cycling became his outlet to cope with the grief.
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