The little girl in the image above is Rafaella Lily (Rafi). She was born with a severe form of Epidermolysis Bullosa (EB). According to the Dystrophic Epidermolysis Bullosa Research Association of America (Debra), EB is “the worst disease you’ve never heard of.” It “is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Today there is no cure.”
My friend Wendy knows and loves Rafi and her family. As such, she is asking you to consider supporting Rafi’s Run, a 5K run/walk that will be taking place (rain or shine) on Sunday, March 10, 2013 at 10am in Riverside Park at 103rd Street. Rafi’s Run was started last year with the goal of raising money for research to help find a cure for EB. You can visit the Rafi’s Run site to find out more information. While there, please sign up to become a sponsor, participate in the run/walk or make a donation if you are so inclined. (Debra of America, a registered 501(c) (3) corporation with the IRS, will distribute all donations. As such, they are tax deductible.)
If you are on social media, you can also follow the progress of Rafi’s run on Facebook at https://www.facebook.com/RafisRun and/or on Twitter at https://twitter.com/RafisRun. Thanks!