$10 million in new grants will fund fragile X research

By LOYD LITTLE
FPG Child Development Institute

CHAPEL HILL -- The U.S. Congress a year ago called on federal and private research agencies to enhance and increase their efforts and commitments to study fragile X syndrome (FXS), the leading cause of inherited mental retardation.

Researchers at the University of North Carolina at Chapel Hill’s FPG Child Development Institute have responded to that challenge. This fall, institute investigators have been awarded six FXS-related grants worth nearly $10 million.

"Our past research helped break ground in understanding FXS, and these new grants will take us to a new level of understanding its impact on families, better identification of FXS in newborns and designing intervention strategies," said Don Bailey, institute director and longtime FXS researcher himself.

The largest of the grants establishes a Fragile X Research Center under the auspices of the Mental Retardation and Developmental Disabilities Research Centers at UNC and the University of Kansas. The center will use a core sample of 100 families to learn how they adapt to the learning and behavior challenges of their children and the family consequences of the inherited nature of FXS.

Another grant will design a multi-state study to screen a million newborns concerning incidence of FXS, examine early development and the effectiveness of early intervention and consider policy recommendation about newborn screening.

Other grants will study speech and language development of children with FXS and examine different models of early intervention. Except for a $30,000 grant from the National Fragile X Foundation, all the grants are from the National Institute for Child Health and Human Development

Besides Bailey, other key institute researchers on the projects are Joanne Roberts, Deborah Hatton, Jane Roberts and Debra Skinner.

FXS is caused by a defective gene on the X chromosome that disrupts the production of a protein essential for normal brain activity. It causes mild to severe mental retardation, seizures and behavior disorders.

The gene responsible for the disease was identified in 1991, but the disease often goes undetected. About one in every 260 women carries the defect, and one in every 4,000 children is born with it. Most children with fragile X will require a lifetime of specialized care at an estimated cost of over $2 million each.

The UNC institute began fragile X research in 1993 and hosts the comprehensive Carolina Fragile X Project, which is examining the impact of the syndrome on individuals, families, and the agencies that represent them.

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Background Web links:

The institute recently posted results of a parent survey about screening for FXS: http://www.fpg.unc.edu/highlight_Detail.cfm?ID=217, www.fpg.unc.edu/; www.fpg.unc.edu/~carolinacommunicationproject; www.fpg.unc.edu/~FX

Photo URL: http://www.unc.edu/news/pics/faculty/baliey_don.jpg

Note: Bailey can be reached at (919) 966-4250, bailey@mail.fpg.unc.edu

FPG institute contact: Loyd Little 919-966-0867, loyd_little@unc.edu
News Services contact: Mike McFarland, 919-962-8593