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July 20, 2000 -- No. 376
Edwards, UNC experts to discuss National Fragile X Awareness Day
Friday, July 21, 2:30 p.m.
UNC’s Frank Porter Graham Child Development Center
105 Smith Level Road, Administration building, 3rd floor main meeting room
This Saturday (July 22) is National Fragile X Awareness Day under a resolution enacted this month by the U.S. Senate that was written by U.S. Sen. John Edwards, D-N.C. On Friday (July 21) Edwards will visit the University of North Carolina at Chapel Hill to announce the national observance of fragile X, a gene disorder and the most common known cause of mental retardation.
Edwards will appear at UNC-CH’s Frank Porter Graham Child Development Center, an interdisciplinary research center that investigates fragile X as part of its focus on child development and health, especially factors putting children at risk for developmental problems. Joining Edwards will be Dr. Donald Bailey, Graham center director and principal investigator for its fragile X work, and two newcomers to UNC-CH who are expanding related research through initiatives based at UNC-CH’s School of Medicine: Drs. Joe Piven and Terry Magnuson. Piven directs the N.C. Mental Retardation Research Center (which the Graham center has worked closely with for 34 years), while Magnuson just arrived to direct a new genetics program and to head a genomics initiative. Go to www.fpg.unc.edu/~fx/ for more background on fragile X and UNC-CH’s work on that topic.
After the announcement, parents of children with the fragile X syndrome will be available for interviews. Later -- after 4:30 p.m. -- interested photographers may take stills or b-roll footage on site of children who are part of a research-oriented child-care center run by UNC-CH. (Important note: These children in the care center could not be depicted as fragile X children.)
The Senate resolution focused on increasing public awareness about the need for research and early diagnosis and treatment of fragile X. The disorder shuts down the gene that produces FMRP, a protein needed for normal brain function. An estimated one in every 260 women carries the fragile X defect, which one in every 4,000 children is born with, according to the resolution. A person with fragile X syndrome typically requires a lifetime of special care costing more than $2 million.
Fragile X lies on the X chromosome in both males and females, but it typically hits males more severely. The disorder remains frequently undetected due to its recent discovery and the lack of awareness about the disease, even within the medical community. However, the genetic defect causing fragile X has been discovered and is easily identified by testing.
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Edwards office contact: Mike Briggs, 202-224-1545
Graham center contact: Loyd Little, 919-966-0867/ firstname.lastname@example.org
News Services contacts: Mike McFarland, 919-962-8593; Karen Moon (broadcast), 962-8595