On Aug. 3, 2007, in a hospital in Glen Falls, N.Y., Robb Freed and his wife welcomed a baby boy into the world. While his birth was a beautiful moment for the couple, it quickly turned to concern as the doctor noticed the baby, named Drake E, did not appear to have the top layer of skin on his fingertips. It was on that day that Freed was plunged into the world of Epidermolysis Bullosa (EB) and a new life that saw him fall to crippling lows and then rise to inspiring heights atop the seat of his trusty bicycle, Rowan, as he rode across the country for his son and to raise awareness of EB.
Epidermolysis Bullosa is a group of genetic conditions that result in sensitive blistering of the skin, caused by at least one of 18 different genes. The underlying result is a defect in attachment between or within layers of the skin, causing the skin to blister with minor trauma or friction. The human skin consists of two layers, an outermost layer called the epidermis and an underlying layer called the dermis. In healthy individuals, there are protein anchors between the layers that prevent them from moving independently, or shearing. In people born with EB, said anchors are absent, resulting in what is colloquially referred to as “butterfly skin.” There are three types of EB, each differing in rarity, cause and prognosis. Drake E was diagnosed with Junctional EB, one of the rarer forms and the worst for life expectancy; he died after just 13 months.
Freed was distraught, as any parent would be. His gravitation to bicycling became a form of therapy. A casual rider prior to Drake E’s death, he found himself spiraling in the grieving process. Then, one day, it clicked.
“After he passed away, I happened to jump on a bike trail and it was just — boom,” said Freed. “It hit me and from that day on, right or wrong, it became an addiction. When he first passed, all I had was anger, resentment and selfishness. On that bike that day there was a freedom, being able to transfer agent to all those things that I lacked in the years after his death. I could laugh, scream, cry, whatever I felt. It offered me the ability to see things differently and I thought: This is going to be my time to take steps forward, lose some of the anger and gain some hope back.”
With that mindset, Freed was off. Cycling became his life, through and through. While he had biked to work prior to Drake E, now he was biking to the grocery store, biking to run errands, biking to meet up with friends. It was more than just a way to cope with his feelings; it was a lifeline to cling to.
“The first few years were just about biking everywhere because I knew it was keeping me going,” said Freed. “It was keeping me alive. In time, friends were telling me how all I do is biking, so why not bike across the country?”
The idea implanted in Freed’s mind and became unshakable. He began to plan the first cross country tour, dubbed The Big Ride for EB, in 2016, with the help of friends to coordinate a proper route and timeline. The reality of the trip came to pass in 2018, when he set off from the east coast on a 225-day, 8,642 mile round-trip tour across America. Working with Debra of America, a medical research charity dedicated to curing EB, Freed rode across the states through the 2018 year to raise awareness and money for those afflicted with the same condition that had claimed his son. He completed his journey on Nov. 8 and, less than six months later, was back on the bike with a new route for another tour.
“This year I decided to go for the resources and stay more on the TransAmerica Trail,” said Freed. “It’s the most popular bicycling route in the world and the resources towns have along the way, hospitality and food, are all great. It’s a harder route than my first ride, but the resources are a nice benefit.”
The TransAmerica Cycling Trail officially opened in June of 1976, when roughly 4,000 cyclists went from Yorktown, Va., to Astoria, Wash., covering 4,228 miles in the process. In the last 43 years, it has seen thousands of additional cyclists travel both ways and now it carries Freed back and forth on his big ride. The trail offers breathtaking views of the Rocky Mountains, Yellowstone and the Grand Tetons, to name a few; and while those sights are wonderful to behold, they aren’t the point for Freed.
“It’s really not a sight-seeing tour,” said Freed. “Some people do this and want to see the sights, I mean, take the Gorge for example — I don’t have this view back home. It’s all beautiful and I appreciate those things, but for me, it always comes back to the real reason I’m doing this: It helps me and it helps other families. I appreciate most the reason behind why I’m riding and the fact that I’m able to keep doing it.”
Freed faces many challenges along the way: Weather conditions vary by state and while predictions are reliable, they aren’t always true. Besides, just because it’s hot doesn’t mean he’s going to stop. Maintaining his bike is another frequent task; while certain bike types are made for long-distance cycling, natural wear-and-tear occurs and must be addressed. The real problems though, what really throws a wrench in the spokes, are those that Freed can’t see coming.
“You know you’re going to deal with weather, you’re going to deal with bike problems, you’re going to deal with hills,” said Freed. “For me it’s the surprise injuries that I get. Last year, I got nipped by a car in Texas and broke my collarbone. I fell in Iowa and broke two ribs and collapsed a lung. This year, I broke a bone in my foot when a kid crushed it with a go-kart. Those are the challenges that really get me.”
Enduring broken bones and collapsed lungs may not have been risks Freed was aware of when he signed up for this ride, but he’s managed them nonetheless. His desire to raise awareness of EB and money for Debra of America is unshakable; the end goal is $1 million. Whether he stops riding after that is another question, though. For now, it seems there’s another trip to be had, though not for a few years, as his role as a father to his 15-year-old son will keep him in his hometown.
“I can’t go while my son is in high school, I want to be there for him,” said Freed. “Maybe in 2022. We are working on going four times in a continuous journey, two round trips in one super long ride. For that to happen, a lot of things would have to fall into place. If I did do it, that would be it — The Big Ride for EB would be done.”
Freed passed through Hood River earlier this week on his way back to Yorktown. He hopes to end this ride around Thanksgiving, but admits “that may be a pipedream at this point.”
With trials and tribulations awaiting along his return journey to the east coast, I asked Freed if he ever thought about quitting and whether he regretted any of it.
“Yes,” said Freed to the first question. “I’ve done about 330 days of cycling now and there’s been maybe two or three where I wanted to quit and would have if I had the option. Regret? I don’t think so. It’s hard on my body, it’s been hard on my son, but I don’t think I regret it. Sometimes I think I’m the luckiest person in the world, to see what I have and meet the people I have. No, no regret at all.”
To learn more about Freed’s story and journey, or to donate to his cause, visit thebigrideforeb.com.