Dad Who Lost Baby to EB Nears Final Stretch in ‘Big Ride’ to Raise Money to Combat Disease

Despite broken bones and all manner of inclement weather, Robb Freed is seven months and 7,000 miles into his super-human quest to bike across the United States and back to raise awareness of epidermolysis bullosa (EB). His 13-month-old son died from the disease 10 years ago.

Freed’s on the back side now, having cycled all the way to the Pacific Northwest. Propelled forward, at this point, by sheer determination, Freed’s trek, which began in Jacksonville, Florida, will end in late October in Coney Island, New York.

“I’m super tired and kind of just cooked, as are the legs,” Freed said in a brief text exchange from the road with Epidermolysis Bullosa News. He’s logged around 100 miles daily, six days a week. He recently stopped at the Cincinnati Children’s Hospital in Ohio, which has one of the nation’s biggest EB clinics.

So far, he’s raised just over $17,000, mostly through his website, “The Big Ride for EB.” Ninety percent of what he raises through donations goes straight to debra, the Dystrophic Epidermolysis Bullosa Research Association of America. The balance will be divided among five charities in this hometown of Glens Falls, New York,.

Robb Freed is riding across the country to raise awareness of EB and money for Debra. (Photo courtesy of Robb Freed)

Freed is paying for his trip mostly through sponsorships, raffles, and the sale of T-shirts and other items. He’s had some out-of-pocket expenses.

 According to debra, roughly 25,000 people in the U.S. live with EB, a skin condition caused by the lack of a crucial protein that binds skin layers together. Without this protein, the skin gets riven, blisters and peels off, resulting in pain, disfigurement, and external and internal sores.

Freed’s son, Drake E. Freed, died Sept. 25, 2008, of complications of Herlitz junctional epidermolysis bullosa, a severe form of EB.

 It’s the memory of his baby boy, and the hope that he can help others, that keeps Freed going.

He is chronicling his adventure on Twitter, Facebook and Instagram. On Facebook, there’s video of him biking on Interstate 90 in heavy rain with 30 m.p.h. winds and gusts of 50 m.p.h. In Beresford, South Dakota, he wrote, “Either it’s 97 degrees and blazing hazy sun, or it’s windy and pouring rain. This journey needs a new weather person.”

 Just as he’s adjusted to fickle and changing climes, he’s also had to alter his diet, given the fact that Freed was basically vegetarian. To keep up his strength after burning excessive calories, Freed has had to reintroduce meat into his diet. 

Then there are the broken bones. Early in his ride, somewhere in Texas, he fell and fractured his collarbone. Recently a spill in West Des Moines, Iowa, resulted in two broken ribs and a collapsed lung, but after several days holed up in a local hotel, he was back on the road.

To learn more about and/or help support Freed’s “The Big Ride for EB” initiative, please visit this link.