The inaugural Mats Wilander Foundation Tennis Pro-Am will be held at the West Side Tennis Club in Forest Hills on Sept. 28. Photo Courtesy debra of America
Children suffering from a rare and painful genetic disorder that causes them to have extremely fragile skin that blisters and tears from minor friction will land support from the West Side Tennis Club on Aug. 28, when the century-old facility will host a fundraiser for the youngsters facing the often pervasive and debilitating condition.
The world’s former number one tennis plus and International Tennis Hall of Fame member, Mats Wilander, will host the inaugural Mats Wilander Foundation Tennis Pro-Am to benefit the nonprofit debra of America on Wednesday, Aug. 28 during the 2013 U.S. Open. Debra of America works with those battling Epidermolysis Bullosa – who are also called “butterfly children” because their skin seems as delicate as the winged insects.
The group is the only national nonprofit dedicated to funding research for treatments and a cure, while also providing supportive services and programs for those who suffer from Epidermolysis Bullosa – which affects about 1 out of every 20,000 individuals. Because there is currently limited treatment and no cure, individuals with the most serious form of the disorder often die before they reach 30 years old.
The benefit will be held from 8:30 a.m. to 2 p.m. at the Forest Hills club and is open to tennis fans of all ages and experience levels. A $250 ticket includes play time with Wilander and other tennis pros on three court surfaces, instructional clinics, competition drills, round-robbins, a professional exhibition match, a continental breakfast, and a barbecue lunch with beer, wine and cocktails.
Organizers said the money raised at the event is especially helpful because rare disorders, such as Epidermolysis Bullosa, receive little funding from the federal government. According to the National Organization for Rare Disorders, there are about 7,000 rare diseases – those which affect fewer than 200,000 people – that impact the lives of 30 million Americans. Just 200 of the 7,000 rare diseases have federally-approved treatments, but only about $120 million of the National Institute of Health’s $30 billion budget goes to fund research for rare diseases.
More information about the disorder and the event can be found at debra.org/benefits or by calling debra of America at (212) 868-1573.
By Anna Gustafson
