RAWLINS — Picking up a new pair of shoes left for him at the Rawlins Post Office Wendsday, Glens Falls, N.Y. cyclist Robb Freed sets to continue on his a mission today to raise awareness for Epidermolysis Bullosa, which killed his son nearly 10 years ago.
“It is a super rare skin disease,” said Freed. “If you think of your skin as layers and your skin is almost velcroed to each other, what EB is like – missing a protein, so the skin does not want to stay bound together.”
With plans of riding more than 8,000 miles across the country this summer, 52-year-old Freed started his trip in Jacksonville Beach, Fla., in March. Over the next few months he plans to ride to Oregon and back east to Cody Island, N.Y.
Having ridden about 2,800 miles thus far, Freed reached Rawlins about 1:30 p.m. Wednesday and took a short break at Comfort Inn and Suites before biking to the post office.
“Since I have been doing this ride, I have had one person out of three or 400 that know what it is,” he said.
Freed first became aware of EB himself shortly before his son, Drake E. Freed, passed away in 2008 from Herlitz Junctional Epidermoysis Bullosa at the age of 13 months. During his life, Drake broke out in blisters on his back, hands, ears, face and other locations.
“Biking became my therapy, so I started biking alot and it became a tradition,” he said. “Through the years people said, ‘You are always talking about EB, you should ride across the country and try to raise funds for Debra of America.’”
Thus far, Freed has raised about $12,824 of his initial million-dollar goal for the international medical research charity that is currently working to find a cure for the disease.
According to Debra’s website, approximately 25,000 people in the U.S. have EB and an additional 200 children in the U.S. are born each year with EB. Working to find himself, on the trip Freed said he has had the opportunity to meet a few of the families affected by EB through his ride in the Texas towns of Arlington and plans to meet a group in Oregon and Missouri.
“Really, you just got to support them through the bad days,” he said. “You can’t really offer advice because every EB kid is different.”
Receiving support from others, Freed said he tells people a few weeks in advance where he expects to be and receives letters, food gift cards and other items.
“I have a sponsorship account, which is basically businesses around the country and companies that have donated to the sponsorship account,” he said. “That money is to help with the cost to ride, for me to eat, bike repairs, bike stuff, clothes and anything that I need along the way.”
Freed said he knew of five types of EB including Aquisita Dystrophic, Junctional, Kindler Syndrome and Simplex, which extend into 30 subtypes.
Prior to starting the ride, Freed spent the past three years riding more than 19,000 miles, which is just shy of the world’s longest recorded maximum cycling distance of 24,902 miles.
Freed hopes to reach Cody Island in September.