Golf, Tennis Tourney Returns To Help Battle Against Rare Skin Disease
NEW YORK (WCBS 880) – Rafi Kopelan spends every day getting bandaged up from head to toe.
That's because the 3-year-old suffers from epidermolysis bullosa, a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe bleeding.
"At any given time, about 50 percent of her body could be an open wound, and these are wounds that may never heal," her father Brett said. "They're prone to infection."
It's a constant battle and Brett is determined to help find a cure. On Monday, his organization, Debra of America, is hosting the 13th annual Mats Wilander Celebrity Tennis & Golf Classic, a benefit to fundraise for EB research.
LISTEN: WCBS 880's Peter Haskell reports on epidermolysis bullosa
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"If we fund a good $25 million, we'll have viable treatment or hopefully a cure," he said.
Severe forms of EB can cause patients to live in constant pain and scarring while the worst forms can lead to disfigurement, disability and often times death.
Right now, even treatment is limited to just three types of therapy.
"There's gene therapy, there's cell therapy and there's protein therapy," Brett said.
The fundraiser will feature golf and tennis at the Westchester Country Club.
