[Congressional Record (Bound Edition), Volume 151 (2005), Part 16]
[Extensions of Remarks]
[Pages 22082-22083]
[From the U.S. Government Publishing Office, www.gpo.gov]




                 NATIONAL SPINA BIFIDA AWARENESS MONTH

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                        Monday, October 3, 2005

  Mr. SMITH of New Jersey. Mr. Speaker, I rise today to remind my 
colleagues that October is National Spina Bifida Awareness Month and to 
pay tribute to the more than 250,000 Americans in the Spina Bifida 
Community, including family members and caregivers. There are an 
estimated 70,000 people in the United States who are currently living 
with Spina Bifida, the most common permanently disabling birth defect.
  I am proud to be the Co-Chairman, along with Representative Bart 
Stupak, of the Congressional Spina Bifida Caucus and encourage all of 
my colleagues to join the caucus. Together we can help to improve the 
quality of life of those living with Spina Bifida and their families.
  The Spina Bifida Association of America (SBAA) is the organization 
that has helped those living with and affected by this debilitating 
disease for over 30 years. The SBAA was founded in 1973 and is the 
nation's only organization solely dedicated to advocating on behalf of 
the Spina Bifida community. Through their almost 60 chapters in more 
than 125

[[Page 22083]]

communities, the SBAA brings expectant parents together with those who 
have a child who suffers from this disease. This interaction helps to 
answer questions and concerns, but most importantly it lends much 
needed support. The good news is that due to breakthroughs in research 
and improvements in health care and treatment, children with Spina 
Bifida are now living to become adults with Spina Bifida.
  Together the SBAA and the SBA of the Tri-State Region work tirelessly 
to help the families of those living with Spina Bifida meet the 
challenges and enjoy the rewards of raising their children to 
adulthood. I would like to commend the local chapter of SBAA in my 
State of New Jersey for all they have done and all that they will 
continue to do. As we recently were reminded, in the wake of a natural 
disaster, people with disabilities are the most vulnerable. The SBAA 
chapter in my State of New Jersey is a partner in the SB Hurricane 
Emergency Lifesupport Program, which was established to help get 
vitally needed supplies to the estimated 10,000 people with Spina 
Bifida and their families who were victims of the hurricanes in the 
Gulf Region.
  Spina Bifida is a neural tube defect that happens in the first month 
of pregnancy when the spinal column doesn't close completely. Spina 
Bifida is a birth defect that can happen to anyone. There are 60 
million women at risk of having a baby born with Spina Bifida. 
Everyday, an average of 8 babies are affected by Spina Bifida or a 
similar birth defect of the brain and spine. Each year, about 3,000 
pregnancies are affected by these birth defects. While we do not know 
the exact cause of Spina Bifida, research has shown that if a woman 
takes 400 micrograms of folic acid every day and before she becomes 
pregnant, she reduces her risk of having a baby with Spina Bifida or 
another neural tube defect by as much as 70 percent. The cause of the 
remaining cases is unknown, but it is believed genetics and environment 
may play a role.
  Today, approximately 90 percent of all babies diagnosed with Spina 
Bifida live into adulthood, approximately 80 percent have normal IQ's, 
and approximately 75 percent participate in sports and other 
recreational activities. With proper medical attention and family care 
these people can live productive full lives with the assistance of 
braces and/or a wheelchair. There are breakthroughs every year that 
benefit the quality of life for those living with Spina Bifida. 
Research is the key to a better life for those who live with Spina 
Bifida. Our goals are to develop better treatments, better 
understanding of causes and new ways to prevent Spina Bifida.
  The SBAA has many special events throughout the year to engender 
greater support for the Spina Bifida community. I congratulate them on 
occasion of their 17th annual Washington event for the media that is 
taking place this week. I again wish to thank the SBAA and its chapters 
for all of their hard work to prevent and reduce suffering for those 
70,000 individuals living with Spina Bifida throughout the nation. We 
all owe a great debt to the SBAA for what they have done.

                          ____________________