Michael Braukus Headquarters, Washington, DC (Phone: 202/358-1979) Beth Nischik Johnson Space Center, Houston, TX (Phone

: 281/483-5111) RELEASE: 01-78

April 20, 2001

NASA AND HED FOUNDATION PROVIDE CHILD'S FIRST OPPORTUNITY TO ENJOY SPRING For eight years, a Texas boy has lived his life in darkened rooms, his body not able to tolerate direct sunlight. Even bright indoor light endangers his delicate skin and can raise his body temperature to deadly levels. However, on April 23, Cardi Hicks gets to do something he's never done before -play outside. Hicks, who lives in Magnolia, about an hour outside of Houston, suffers from four rare skin diseases that force him to stay out of the Sun and its potentially harmful ultraviolet light. That all changes Monday, with the help of technology from NASA's Johnson Space Center (JSC), Houston, TX, and the Hypohidrotic Ectodermal Dysplasia (HED) Foundation and Related Disorders, Hampton, VA. Cardi will receive a special UVprotection suit that was developed from space-based technology. The suit allows him to go outside protected from harmful light. The protective suit includes a white jacket, pants, gloves and headgear, including goggles. The external garments protect the child's sensitive skin from more than 99.9 percent of the Sun's hazardous UV rays. Underneath the protective Earth-bound spacesuit, the child wears a small cooling support system, necessary because fullbody UV suits can get warm. The cooling unit has no moving parts, using four gel packs in a vest-like garment. The gel packs can supply cooling for two to four hours and can be recharged in a refrigerator in about 30 minutes.

Through an agreement with JSC's Office of Technology Transfer and Commercialization, NASA and the HED organization have worked together since 1997 providing suits to children who need them. The suits are designed to cost under $2,000 and are now available in various colors. With the suits many families, after years of having to deal with the restrictions of a child's condition, can live more normal lives. The organization began in 1986, when HED foundation founder and president Sarah Moody sought help from NASA's Langley Research Center, Hampton, VA, in finding a cooling garment for her nephew, who suffered from HED. Victims of HED lack sweat glands, which can lead to heat stroke, heat exhaustion and even death. The foundation also provides cooling garments to children with Multiple Sclerosis, Spina Bifida, Cerebral Palsy and other disorders. In 1997, JSC, seeking a broader use for spacesuit technology, offered Moody the concept for the UV-protection garment and a fashion model donated money to the foundation. Word spread and more donations came from other sources. The first three suits distributed were prototypes provided by NASA. The foundation has provided more than 15 additional UV suits. Cardi and his family will receive the special suit at 10:30 a.m. EDT in Room 201 at Regents Park, Houston, TX. For more information, contact the HED Foundation at Box 9421, Hampton, VA, 23670, or on the Internet at: http://www.hedfoundation.org -endNote to Editors: Reporters who want to attend the UV suitpresentation event should contact Beth Nischik at the JSC newsroom on 281/483-5111 for additional details.