On 8,000-mile journey, father raises awareness of 'the worst disease you've never heard of'
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A FATHER’S JOURNEY

On 8,000-mile journey, father raises awareness of 'the worst disease you've never heard of'

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DECATUR — Robb Freed is on a cross-country, solo journey to raise awareness and funds for what he calls "the worst disease you've never heard of."

Next week is the 10-year anniversary of the death of Freed's 13-month-old son from epidermolysis bullosa, a group of diseases that cause painful blisters to form on the skin. On Wednesday, he stopped in Decatur during the midst of his 8,000-mile journey, dubbed "The Big Ride for EB." 

Freed embarked March 29 on the trip that will take him from Jacksonville, Florida to Maple Valley, Washington, and back to Coney Island, New York. When he arrived at Decatur's Central Park to take a break, he had just reached the 7,000-mile mark on his return trip.

Freed is collecting donations for the Dystrophic Epidermolysis Bullosa Research Association of America, which funds research toward a cure and provides programs and services toward patients and their families.  

Along the way, he's also collected many memories, including the meeting of a fellow cyclist who decided to ride with him and teach him survival skills for a section of his route through Seattle.

He found himself questioning the future of the trip after a bike accident in Missouri Valley, Iowa, where he was trying to avoid a pothole. Freed had to ride about 18 miles with broken ribs to find medical care. He was able to continue the trip after a generous hotel manager allowed him to stay in a room for as long as he needed to heal, he said.

Freed still has several stops planned, including a meeting with an epidermolysis bullosa patient in Danville and a visit at a Cincinnati hospital where there are specialists in treating the disease. 

As he faces the final 1,000 miles, Freed says his mission has been successful. He's looking forward to one final destination — seeing his family again in Glens Falls, New York. 

To learn more or donate, visit thebigrideforeb.com

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