Robb Freed and his bike Rowan are cycling throughout the United States to raise awareness for a rare skin disease called Epidermolysis Bullosa (EB), which sadly took the life of his son. Last weekend, his nearly 10,000-mile trek landed him in South Walton. Read on to find out how Courtyard Sandestin got involved.
What is EB?
According to debra of America, an organization that funds research towards curing EB, Epidermolysis Bullosa 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 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. While EB is considered a rare disorder, Robb’s son Drake had an even more unique form of it called Junctional Epidermolysis Bullosa and was given a life expectancy of less than a year. In 2007, at just 13 months old, Robb’s son passed away from his condition.
Robb rides the Big Ride
In memory of his son and to raise awareness for “the worst disease you’ve never heard of,” Robb began riding his bike long-distance, crossing mountains, states, and time zones. He calls it ‘The Big Ride for EB.’ This year, during his second cross-country trek, Robb decided to head south for the Atlantic Ocean. He reached South Walton on January 17th for a much-needed break and bike repairs. Once we learned about Robb’s mission and cause, we were happy to host him, and his bike Rowan, for two complimentary nights at Courtyard by Marriott Sandestin at Grand Boulevard. When asked why he’s taking on this challenge, Robb said, “It’s about doing the right thing. So many people still do not know about this life-altering condition. It’s about getting in front of congress, talking to people, and doing your part to make a difference.”
Doing the right thing, regardless of the difficulty, is what we continuously strive for. To donate to Robb and The Big Ride for EB, or to sponsor his next journey, click here.
The award-winning team of Howard Hospitality manages Courtyard by Marriott Sandestin at Grand Boulevard.