EB fundraiser returns to West Side
by Michael Perlman
Aug 20, 2014 | 9701 views | 0 0 comments | 237 237 recommendations | email to a friend | print
Attendees at last year's fundraiser.
Attendees at last year's fundraiser.
Philanthropic events surrounding the sport of tennis are on the rise at Forest HIlls' West Side Tennis Club.

The latest will take place on August 27 from 8 a.m. to 4 p.m. with the 2nd Annual Mats Wilander Foundation Tennis Pro-Am. For every ticket purchased, the public can help bring DebRA (Dystrophic Epidermolysis Bullosa Research Association) of America a step closer to finding a cure and treating epidermolysis bullosa (EB), a very rare yet debilitating disease often referred to as “the worst disease you’ve never heard of.”

Each ticket includes a team competition, instructional clinics, a pro meet-and-greet and food and drinks. Attendees will also have the chance to play with Mats Wilander.

The Sweden native was once ranked number one in the world and won seven Grand Slam singles titles. When he won his fourth Grand Slam at age 20, he was the youngest male player in history to achieve that record.

In 1998, Mats and Sonya Wilander became advocates of DebRA of America when their son, Erik, was born with a mild form of EB. Sonya joined the Board of Directors and helped launch the annual DebRA of America Benefit, which occurs during the final week of October and National Epidermolysis Bullosa Awareness Week.

“Each year, approximately 200 children are born with EB in the United States, which is equivalent to 1 out of 20,000 births,” said Brett Kopelan, executive director of DebRA and father to Rafi, a six-year-girl with EB. “Any disease that affects less than 200,000 is considered an orphan disease, which meant that until recently, no major pharmaceutical company would develop a drug for it, given the lack of financial upside.”

A person with EB can have as much as 75 percent of their body covered in blisters and open wounds because their extremely fragile skin is subject to the slightest friction or trauma. In addition, since EB affects internal organs and biological systems, it can result in a wide range of symptoms and medical complications.

“It's an exciting time because of the strides in research and involvement of more commercial entities,” said Kopelan. “Projects are underway in gene therapy, protein replacement therapy, and cell therapy.”

As far as the West Side Tennis Club, it looks as if a new community tradition has taken root.

“We’re very excited to return to the West Side Tennis Club,” said Casey Fitzpatrick, director of Communications for DebRA of America. “We launched the Pro-Am last summer, and wanted to give our guests an unforgettable day of tennis at a historic venue.

“Since we sold all 50 Player Pass tickets last year, we’ve added tickets for August 27 due to the event’s popularity,” he added.

And Forest Hills at large has joined the cause.

“Several of the club’s members joined us last year, and local businesses showed their support by donating items for our raffle,” Fitzpatrick said.

The public can also “gamble for a cure” at the 16th Annual DebRA of America Benefit on October 22 at B.B. King Blues Club in Midtown Manhattan. For both events, visit their website..

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