BOARD MATTER
October 17, 2005

Rett Syndrome Awareness

Mr. Chairman:

Rett syndrome (RS) is a neurodevelopmental disorder predominantly seen in females. It is one of the leading causes of cognitive impairment in females and occurs approximately once in 10,000 to 15,000 live female births. RS has intriguing similarities to autism, which is found much more frequently in males. Since 1999, it has been known that RS is caused by a gene mutation that inhibits normal development of selected regions of the brain responsible for motor, autonomic, sensory and emotional functions. After apparently normal development for the first 6-18 months of life, the impact of the genetic mutation disrupts development, causing a dramatic loss of physical and communication skills which leads to severe and multiple handicaps, usually by the age of three years. RS is not limited to, or more prevalent in, one particular race or geographic region and it invades every social-economic level.

Families with children who have Rett syndrome face many challenges learning to cope with seizures, physical therapy, braces and wheelchairs, feeding tubes, mounting medical bills, and relentless procedural and policy problems with many institutions including those concerning health insurance, education, housing and social services. There may be 200,000 girls and women worldwide who have Rett syndrome. More information about combating Rett syndrome and contributing to a cure may be found through the Rett Syndrome Association at 1-800-818-RETT or the Web site at www.rettsyndrome.org.

Therefore, Mr. Chairman, I ask that the Board approve the following actions:

Declare October as "Rett Syndrome Awareness Month" in Fairfax County; and

Direct the Office of Public Affairs to publicize information about this little known but devastating disease through a news release, the County Web site, and the Channel 16 bulletin board.