He describes the money from Rafi's Run as vitally important to his work.
"The fact is, we need more brainpower to develop new therapies," said Tolar. "The more people who wake up in the morning and spend their entire day dedicated to studying EB, the faster we can move the research forward."
Next month, the second annual Rafi's Run will take place in New York. Bederman and Pallad are hoping to match last year's total and look forward to once again putting the money in the hands of an early-stage researcher.
In the meantime, the Kopelans continue treating Rafi's disease. To fight the high risk of infection that comes from having so many open wounds, Rafi endures a daily bath in a solution of diluted bleach, followed by an application of specialized bandages. From start to finish, it takes two hours, and the pain it causes Rafi is excruciating.
"It's physically and emotionally exhausting," said Jackie Kopelan, Rafi's mother. "I wish we had more hugs and kisses than baths and bandages."