Girl Inspires Fight for a Cure
The combination of friends and social media can do wonders for people in need, and Rafi Kopelan truly needed it. Rafi is a five-year-old girl who, despite being covered from head to toe in blisters and lesions, enjoys her life playing with toys and reading children's books. The lesions present throughout Rafi's body are caused by a rare connective tissue disorder called epidermolysis bullosa (EB), which she and roughly 15,000 children in the United States were born with. EB is a genetic disease that causes the skin to tear and breakdown at the slightest touch and the organs to become weak and destroyed, possibly leading to organ failure. According to the Dystrophic Epidermolysis Bullosa Research Association of America, the disease prevents the body from producing a specific type of collagen that the skin needs from easily breaking down.
Rafi currently lives with blisters on over 75 percent of her body, scratched corneas, fused toes, and a scarred esophagus, but despite all of this, she stays incredibly strong. It is her struggle to survive that inspired Jill Arnold Pallad and Jamie Granet Bederman to start the Rafi's Run, which is an annual charity 5K run to help raise money for funding research in finding a cure for EB. Pallad and Bederman met Rafi through Montclare Children's School based in New York City and they became determined to help find a cure for Rafi and other children with this rare disease.
What started off from small actions, such as emailing and using Facebook became a huge change for the EB inflicted population. "We had no media plan or press plan, and no big corporate fund. We all just networked through out friends and family," Bederman expressed.
"Social media was huge in reaching people both inside and outside our community. We all started fundraising pages and i twas amazing watching people come out of the woodwork," added Pallad to CNN.
Since then, Pallad, Bederman and the group of people who have joined the cause have raised $200,000, which they donated directly to Dr. Jakub Tolar, director of the Stem Cell Institute at the University of Minnesota in Minneapolis. Dr. Tolar researches possible EB treatments. Pallad and Bederman are optimistic about finding volunteers and donors for this cause, hoping a cure can be found soon for these poor children.