You might have seen him on the streets around town; a man on a bicycle with packs of gear mounted to the sides, trudging along the road. The dipping temperatures have RoBb Freed dreaming of his final destination in Florida, but for now his cross country trip is directing him east through this part of the country.
Freed is completing his second cross country and back trip. It’s a solo and self-supported bicycle journey to raise funds and awareness for a disease called epidedermolysis bullosa. It’s a rare, deadly skin disease that took his infant son’s life in 2008.
Afters his son’s death, Freed suffered with depression and he and his wife ultimately separated. It was friends and family members that encouraged him to bike and the activity became a sort of therapy for him.
“The biking is so addictive for me,” said Freed. “I hated everyone before I started riding.”
The pain of enduring his son’s death is fought off by his efforts to raise awareness and funds for DEBRA: Dystrophic Epidermolysis Bullosa Research Association of America. DEBRA is the only U.S. nonprofit providing all-inclusive support to the EB community, through funding research for a cure and by providing free programs and services for those with EB. It is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure.
There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Freed’s son died of the disease when he was 13 months old.
“When I started riding two years ago, I was in a really bad mental place,” said Freed. “But this country is full of generous, caring and kind people, people who would off the road, just to see if I was OK.”
Freed will head to Jacksonville, Florida where his first journey west began two years ago and then home to Glens Falls, New York. He is interested in working with the nonprofit group DEBRA to organize other bike rides in order to fight the disease.
Those interested in donating should visit the DEBRA website: http://www.debra.org.
Jackie Anders can be reached at email@example.com.