[Congressional Record (Bound Edition), Volume 155 (2009), Part 19]
[Extensions of Remarks]
[Page 25591]
[From the U.S. Government Publishing Office, www.gpo.gov]




                 NATIONAL SPINA BIFIDA AWARENESS MONTH

                                 ______
                                 

                         HON. MICHAEL N. CASTLE

                              of delaware

                    in the house of representatives

                       Thursday, October 22, 2009

  Mr. CASTLE. Madam Speaker, I rise today in recognition of October as 
National Spina Bifida Awareness Month, which aims to bring awareness to 
the nation's most common permanently disabling birth defect, affecting 
3,000 pregnancies every year. New data from the Center for Disease 
Control and Prevention, CDC, reported this spring, indicates the number 
of Americans with spina bifida is actually 154,000--double what was 
previously thought. According to the Delaware Health Statistics Center, 
approximately one out of every fifty-six babies born in Delaware with 
birth defects suffers from spina bifida. Spina bifida occurs within the 
first month of pregnancy and leaves a permanent opening in the spinal 
column that subsequently impacts nearly every organ system. People with 
spina bifida face a host of complications, such as physical, 
developmental, educational and vocational challenges, among others.
  The National Institution of Neurological Disorders and Stroke at the 
NIH supports research on neural tube defects. Studies have shown the 
addition of folic acid (0.4 mg of folic acid daily) to the diet of 
women of child bearing age may significantly reduce the incidence of 
neural tube defects. An estimated 70 percent of neural tube defects, 
including spina bifida, are preventable through consumption of folic 
acid prior to pregnancy, and National Spina Bifida Awareness Month 
plays a critical role in conveying this prevention message to the 
public. As a 2005 study uncovered, the current system of care serving 
people with spina bifida does not fully meet current or anticipated 
needs, and physicians have little evidence-based research on which to 
build appropriate treatments. Increasing awareness of spina bifida will 
also focus attention on the need to expand and intensify evidence-based 
research to improve the quality of life of those living with spina 
bifida.
  Mr. Christopher Malone, who is a board member of the Spina Bifida 
Association, visited my Washington office on October 2, 2009 to discuss 
the challenges facing children with spina bifida. When I listen to 
accounts from constituents like Christopher Malone, I am reminded of 
the enormous impact that spina bifida has had not only on those with 
this condition, but on their family members and friends.
  I thank Mr. Malone and the members of Spina Bifida Association for 
their efforts and leadership over the last 36 years, and for their 
ongoing commitment to improving the quality of life of people affected 
by spina bifida. Too many Americans suffer needlessly from this birth 
defect when many cases are preventable.
  Education and awareness, prevention, and research are key. During 
National Spina Bifida Awareness Month, I hope we will all take the time 
to learn more about spina bifida and support these endeavors.

                          ____________________