Illinois News

Dad riding bike across U.S. to fight rare disease that killed his son

Robb Freed poses for a photo at Edge Water Park on Saturday, Sep. 15, 2018. Freed is biking back across the U.S. after going from Florida to Oregon to raise money and awareness for epidermolysis bullosa, a rare skin disease that claimed his 13-month-old sonŐs life 11 years ago. | H-W Photo/Jake Shane
Jake Shane 1|
By Herald-Whig
Posted: Sep. 14, 2018 12:01 am Updated: Sep. 15, 2018 11:40 pm

QUINCY -- Robb Freed arrived in Quincy Friday afternoon on the return leg of what will be more than an 8,000-mile cycling tour of the nation, raising funds to fight a rare disease that took the life of his son.

"EB (epidermolysis bullosa) affects one out of every 20,000 births. There's no cure and they're looking for better treatment for this horrific disease," said Freed, whose bike ride has been raising money for research.

Freed, 52, turned to biking to deal with the emotional pain of losing his 13-month-old son to EB. Starting in March he left Jacksonville, Fla., for Astoria, Ore., and then started the trek back toward New York.

Along the way he's raising funds to fight EB and raising awareness of what he calls "the worst disease you've never heard of."

Freed said his son, Drake, died Sept. 25, 2008. During Drake's short life, Freed learned that EB is an incurable skin condition caused by the lack of a critical protein that binds skin layers together. Lacking the protein, skin tears, blisters can be caused by minor friction and can peel from the body. The condition is extremely painful and can cause disfigurement and sores. Internal damage also occurs.

In order to pay for the trip, Freed is selling T-shirts, rubber bracelets and other items. He has some sponsors and has tapped his own savings.

The bike ride has been challenging. Freed suffered a fractured collar bone earlier in the ride. He fell in Iowa a couple of weeks ago, breaking two ribs and partially collapsing a lung. He spent a week convalescing in a West Des Moines, Iowa, hotel before resuming the ride.

In order to maintain his strength while burning so many calories, Freed has to eat large meals. A former vegetarian, Freed had to reintroduce meat into his diet.

"I'll go into McDonald's and order four to six chicken sandwiches and two orders of fries. I've eaten a large pizza," Freed said.

He's also run into lots of nice people along more than 6,800 miles of highway. In Louisiana he spent the night locked in a seafood restaurant that's well known for putting up touring bicyclists.

"There was no shower, but the owner was a nice guy and there were two other cyclists staying there that night, too," Freed said.

Newspapers and broadcasters along his route have done stories on Freed and told people how to donate to the Dystrophic Epidermolysis Bullosa Research Association of America, also known as DEBRA. So far the site reports that Freed has raised more than $17,000 through his awareness ride.

"It really has all been worth it. I miss my son and my friends and I'm homesick more often than not, but this is providing hope for the EB community," Freed said.

If things go as planned, Freed plans to reach Coney Island, N.Y., by the end of October.

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