A 53-year-old dad from Glens Falls, N.Y., is tackling his second solo, self-supported cross country and back bicycle journey to raise awareness for the rare, painful skin disease epidermolysis bullosa.

Robb Freed’s son Drake E. died at 13 months on Sept. 25, 2008, from complications of Herlitz junctional epidermolysis bullosa, a severe form of the disease. 

The Epidermolysis Bullosa News reported at ubne.ws/2YxYLzg that Drake E. was born without skin on his fingertips, an EB symptom that immediately alarmed his doctor. Drake E. was the hospital’s first EB patient in about 50 years.

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“The woman who delivered Drake E. wasn’t young. I knew that she had delivered more than her share. So when she said she had never seen that before, something hit me,” Robb said in the story. “But other than his fingers, he was a perfect-looking little boy.”

The EB group of genetic conditions cause skin to blister easily and be very fragile. Minor rubbing, scratching or injuries can cause blisters and skin erosions resulting in infections and worse.

Life expectancy is poor for some, with about half of children not surviving past the first year of life and many others who die before age 5. The condition affects an estimated 1 in 30,000 to 50,000 people. 

“I could never get over, never deal with the loss of him,” Robb said in an April 18 interview with NBC News Channel 13 WNYT in Albany, N.Y.

A former bartender, Robb took up bicycling after Drake E.’s death and in 2018 on his Big Ride for EB, cycled 225 days and covered 8,642 miles round trip to raise funds for EB research. 

Riding serves as treatment on wheels: “I had so much anger, but I never approached the idea of dealing with the loss of Drake E. This is my outlet, my therapy. I can cry, I can be mad. I can smile.”

About 90 percent of his charitable effort benefits Debra of America, Inc. (Dystrophic Epidermolysis Bullosa). The national voluntary health organization seeks a cure for EB and to improve the care and quality of life for people with the disorder and their families. Some funds go to five charities in his hometown

Robb’s currently on The Big Ride for EB 2019-2.0, pedalling from 50 to 70 miles per day, six days out of seven. 

He pushes through the fatigue believing he can’t stop. “The awareness is what it’s all for and giving families hope,” he said. “You can go days without water, you can go days without food, but you can’t go one day without hope.”

He is often scheduled for special EB events where he’s a guest of honor. A Canadian group wanted to fly down, pick him and his bike up, taken him to a cycling event so he could join them, then return him, but he was unable to meet the schedule.

He left Yorktown, Va., on April 24 headed to Seattle and is now on the eastbound leg of his journey, expecting to finish in November somewhere on the East Coast. He was in Hermiston on Aug. 8, Walla Walla on Aug. 9, Lewiston on Aug. 13,  and today is in Orofino, Idaho, en route to Montana. 

His bike is dubbed “Rowan,” in honor of another child who suffers from EB. 

En route he meets with children and families currently dealing with the pain that affected Drake E. — a huge component of his journey — and stays in hostels, churches, firehouses and tents, WNYT reported.

While eating lunch with Robb at El Sombrero, he told me the cycling for Drake E. and other EB families and fundraising, is “for myself, for peace of mind. I put one foot in front of another. I still have anger, but not like the first four years.”

He typically follows TransAmerica Trails and map routes as it keeps him near resources such as food, shelter, laundry and showers. 

Walla Walla is not on the route, but through warmshowers.org Robb connected with a local host who provided a shower and place to sleep. 

Robb’s always on the lookout for hostels and other accommodations and said he’s stayed in a police department cell and a volunteer firefighter facility where cyclists passing through have a place to sleep, a shower and even a refrigerator stocked with drinks and snacks. These places and people are part of a network across the country, he said.

Good roads are key for all cyclists, as Robb can attest. 

He thoroughly disliked riding anywhere in Ohio in 2018 because of debris-strewn roads that made him fall and get hurt — “every road was 100% crap,” he noted on his website. He suffered a collapsed lung and two broken ribs while cycling in 2018.

Adventurecycling.org strives to improve bicycle travel conditions with maps and by advocating for better roads, more trails, bicycle travel-friendly communities and connections such as trains and buses. 

Last year Robb wore out five pairs of cycling shorts and nine pairs of gloves, crossed the Continental Divide 10 times, saw a tornado in Wyoming, got chased by many dogs and experienced a high daytime temperature of 104 degrees in Idaho and a 31-degree low in Yellowstone.

He is working to set up a nonprofit focused on children’s rare diseases and helping the families. And despite the lengthy trip, he keeps in close contact back home with son Chase, 15.

Etcetera appears in daily and Sunday editions. Annie Charnley Eveland can be reached at annieeveland@wwub.com or afternoons at 526-8313.  

Etcetera appears in daily and Sunday editions. Annie Charnley Eveland can be reached at annieeveland@wwub.com or afternoons at 526-8313. 

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