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U.S. House of Representatives Staff Briefed on Preventing the Leading Cause of Mental Retardation: Fetal Alcohol Spectrum Disorders
March 16, 2005
On Wednesday, March 16, 2005, The National Organization of Fetal Alcohol Syndrome (NOFAS), along with the Congressional Caucus on Fetal Alcohol Spectrum Disorders co-Chaired by The Honorable Jim Ramstad and The Honorable Frank Pallone, Jr., the Congressional Prevention Coalition co-Chaired by The Honorable Jim Leach and The Honorable James Moran, and the Addiction, Recovery and Treatment Caucus co-Chaired by The Honorable Jim Ramstad and The Honorable Patrick Kennedy hosted a briefing for members of the U.S. House of Representatives and their staff on the prevention of fetal alcohol spectrum disorders (FASD), our nation’s leading known cause of mental retardation. The event was held over a complimentary lunch in the Rayburn House Office Building.
A panel of three FASD experts addressed an audience of over fifty House staff, federal officials, and representatives from maternal and child health organizations. NOFAS President Tom Donaldson welcomed the audience and briefly explained the gravity of the effects prenatal alcohol exposure has on individuals with FASD, families who care for them and society as a whole. Remarks by U.S. Representative and FASD Caucus co-Chair Frank Pallone, Jr. followed, emphasizing the importance of addressing the problem of FASD within our American Indian communities and focusing on the prevention of these and other devastating life-long illnesses before they begin.
Panelist Dr. Kathleen Sulik, Professor of Cell and Developmental Biology at the University of North Carolina – Chapel Hill, described the various effects of prenatal alcohol exposure on human development. She focused on the first thirty to forty-five days of pregnancy, the stage at which exposure to alcohol is most likely to affect formation of facial features. Dr. Sulik highlighted a number of studies conducted on mice to illustrate the deleterious effects of alcohol on the developing fetus.
Kathleen Mitchell, NOFAS Vice-President and National Spokesperson, discussed her experience as a birth mother of an adult with FAS, her daughter Karli. Karli is thirty-one years old, but she is still unable to tell time or cross the street by herself. Karli was misdiagnosed for the first 16 years of her life with inflictions ranging from willful misbehavior to cerebral palsy. FASD is often misidentified as other conditions, such as attachment-bonding disorder, borderline personality disorder, and autism. Ms. Mitchell stressed that an early and accurate diagnosis is key to receiving appropriate educational and medical support, as well as breaking the cycle of addiction within the family. It is also vital to train physicians and allied health professionals to identify and treat women with addictive disorders in order to prevent future cases of FASD.
Panelist Dr. Coleen Boyle, Director of the Division of Birth Defects and Developmental Disabilities at the U.S. Centers for Disease Control and Prevention, presented the latest research used to target FASD prevention and summarized the current FASD-related activities of the U.S. Department of Health and Human Services. Research included in Dr. Boyle's presentation indicate that an array of chronic and binge drinking patterns exist among women of childbearing age in all 50 states, with virtually no change in these behaviors over the last decade. Among the approaches necessary to prevent FASD, Dr. Boyle emphasized the importance of increasing healthcare provider knowledge and developing targeted interventions for women at high risk for alcohol exposure in pregnancy through programs such as CDC's Project CHOICES.
FASD is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. FASD affects an estimated 40,000 newborns each year - more than Spina Bifida, Down Syndrome and Cerebral Palsy combined.
For more information on this Congressional Briefing or FASD, contact NOFAS at (202) 785-4585 or at www.nofas.org.
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