Among the myriad rare diseases that strike at random, Epidermolysis Bullosa (EB) is a particularly grueling ailment for its sufferers. Caused by a genetic keratin imbalance in the skin, EB patients face a life of near-constant pain and irritation, an exponentially greater risk for skin cancer, and a litany of other daily maladies. Something as simple as scratching an itch can lead to life-threatening conditions. As of today, there is no cure or treatment for the disease. But there is hope.
Established in 2012 in the interest of combating the “worst disease you’ve never heard of,” Rafi’s Run is a 5K run/walk through Riverside Park geared to generate awareness and funding for genetic research towards finding a cure. The inaugural Rafi’s Run generated over $200,000 for EB research, donated entirely to the gene therapy research of Jakub Tolar, MD/PHD, director of the Stem Cell Institute at the University of Minnesota.
Rafi’s Run was conceived and created by Jacqueline Kopelan, the mother of the eponymous Rafi. Inspired by fellow mothers at Rafi’s preschool, Kopelan (an avid runner herself) formed a committee and was met with immediate support from the school and local community. The inaugural race drew over 100 participants and projects to match or surpass that number this year. This year’s 5K run/walk with also be followed by a 12-and-under children’s fun run.
Interested runners or donors should visit rafisrun.com for information on registration, fundraising, and updates on Rafi herself.