Robb Freed is doing something unusual. He’s biking 8,000 miles across the US to raise money and awareness for a disease that most people have never heard of. If you had asked him why a few years ago, he would have told you that riding his bike was his way of dealing with his grief after his 13 month old son passed away from the rare disease epidermolysis bullosa, or EB; but now, it’s become so much more.
Robb Freed was nominated by a fellow EB parent because of his dedication to bringing awareness to EB and raising funds for DEBRA, one of the premier organizations that assists EB patients and their families. Robb’s journey with EB started the day that his son, Drake E, was born with the most severe subtype of EB. After 13 months in and out of hospitals, receiving love and care from family and physicians, and fighting courageously, Drake E passed away on September 25th, 2008.
After Drake E’s death, biking became a form of therapy for Robb. “I had to find a way to live my life… biking has been a way to work through the passing of my son. It became a part of me.” Although his son was the motivation for Robb’s bike ride across the country, a coworker and close friend was the one who planted the seed of the idea. “He told me, ‘You have to do something different. You should grab your bike, ride across the country, and raise money for DEBRA.’ We’d go back and forth and joke about how I’d do it… and eventually it turned into something real.” That something real is The Big Ride for EB, the official name for Robb’s cross-country trek.
Robb received an outpouring of support from friends and colleagues, who bought t-shirts, donated money, and encouraged him throughout the planning process which took over his day to day life for almost 5 years. Robb started his ride in early 2018, nearly 10 years after his son’s passing. After having talked about it for so long, to actually be doing it now is surreal. The month before it started, Robb was a nervous wreck. “I couldn’t sleep, I couldn’t eat, I was crying at the airport. But once I started, I think it kind of hit me: I’m doing this now.”
Robb’s ultimate goal is to raise $1,000,000 for DEBRA. Each dollar raised will go to funding research along with providing services and programs for EB patients and their families. Robb’s dedication to raising awareness and funds through The Big Ride for EB is inspiring. One thing he reiterates is that the ride isn’t about him or his son. “It’s about doing the right thing because I can.” Even though his son is no longer here, Robb continues to serve as a driver of hope for the EB community and carries the mantle of raising money and awareness for other families in the same situation.
Who’s made a difference in your rare disease? Whether it’s a teacher, parent, pastor, friend, or physician, if you want to recognize someone who has impacted your life, click here to nominate them! Not only do we hope to recognize those who have made a difference in the rare disease community, it is our hope that these stories motivate others with practical inspiration for how they can make a real, lasting impact in the community.