In this episode, we are thrilled to help Robb Freed raise awareness for the Big Ride for EB as he plans a 7,000-mile cycling journey across the US and back. Approximately 200 children a year are born with EB and there is no treatment or cure.
Through our conversation with Robb, we learn about how the 13 months with his son were a learning experience about EB, coping with the disorder, and making the best decisions possible. Robb also shares advice for families who are just beginning their battle with the EB diagnosis.
As we talked about the Big Ride for EB, he shared details about the route that starts on February 28, 2018 - Rare Disease Day. Ninety percent of the proceeds go to Debra of America and the remaining 10 percent will be split between five other charities that Robb highlights in this interview. Robb also took a moment in this episode to envision the final day biking through Coney Island to finish the journey.