After the death of his infant son, Robb Freed had a difficult time moving forward and coping with that loss. That feeling persisted for a few years following an experience he said no one should have to go through until he found a way to push — or pedal — past it.
"Biking become such an important part of me being able to put steps forward after his passing away. Biking became like an addiction; I had to have it. It gave me my freedom, it gave me my hope, it gave me all these things," Freed said.
Freed's son Drake passed away at 13 months old in 2008 from a rare skin disease known as Epidermolysis Bullosa. Once a coworker found out about his new cycling hobby, they suggested Freed go cross country to raise money and awareness for EB in memory of his son.
Freed's initial reaction to the idea of cycling cross country was that it would never happen. Now, the resident of Glens Falls, New York, is in his second year of "The Big Ride for EB" — a trip across the country and back to raise awareness for the disease that took the life of his son — which recently brought him through Newton.
Starting on April 24, Freed began his ride across the county from Yorktown, Virginia, to Seattle and then back to the East Coast. While his son is a big part of why he started "The Big Ride for EB," Freed admitted the awareness is a big part of why he kept going, though his son's story plays a role in that as well.
"The thing about these rides and these journeys; it's not entirely about him. If you think of this being a piece of the pie, there's so many different parts of why I do this," Freed said. "He is part of it, so it is honoring him. He was here for 13 months, so I think by me doing this, it kind of continues his legacy."
Riding across country also connects Freed with more families affected by EB, who follow and support his journey. These connections shine a light on a disease that goes mostly unnoticed, given that only 200 babies are born with the disease each year in the United States.
"I think since I've been doing this — I've crossed the country two and a half times basically — I think I've actually come across one person who I legitimately think knew what it was," Freed said. "The awareness is so huge because nobody knows what it is. Obviously, I want a cure, I want better treatment, I want all these things, but to get that awareness (is needed)."
Going on a cross country ride, he has met some individuals afflicted by EB — like a father/daughter duo suffering from EB who he encountered in Seattle on his first ride.
Supportive as those families have been of his mission, Freed is not stopping at just raising awareness, as he also hopes to raise funds over the course of his trek for the Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA). DEBRA is seeking to find a cure for the disease marked by blistering skin that can only be managed currently.
Year two of "The Ride for EB" has brought Freed through Kansas for the first time after slightly amending his route. While he admitted his body may not have fully recovered from the first ride (covering 8,642 miles in 225 days), he keeps going on his mission. Now, he is trying to provide a spark for those going through a difficult situation with which he is all too familiar.
"These journeys, they are about hope," Freed said. "It's about providing hope for families that have kids now."
For more information on Freed's mission or how to donate to DEBRA, visit his website at www.thebigrideforeb.com.