[Congressional Record (Bound Edition), Volume 151 (2005), Part 18]
[Extensions of Remarks]
[Pages 24421-24422]
[From the U.S. Government Publishing Office, www.gpo.gov]




                 TRIBUTE TO THE SPINA BIFIDA COMMUNITY

                                 ______
                                 

                            HON. BART STUPAK

                              of michigan

                    in the house of representatives

                       Tuesday, November 1, 2005

  Mr. STUPAK. Mr. Speaker, I rise today to pay tribute to the more than 
250,000 Americans in the Spina Bifida Community. An estimated 70,000 
people in the United States currently live with Spina Bifida, the most 
common permanently disabling birth defect. Each October we recognize 
these Americans during National Spina Bifida Awareness Month, but we 
must work year round to advance research and policies to meet the needs 
of this community.
  As co-chair of the Congressional Spina Bifida Caucus, I've had the 
honor to work with the Spina Bifida Association of America, SBAA, to 
advance Spina Bifida awareness, research and public health efforts in 
Congress. For over 30 years, the SBAA has helped those living with and 
affected by this debilitating disease. Founded in 1973, the SBAA 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 communities, the SBAA brings expectant parents together with 
those who have a child with Spina Bifida. This interaction helps to 
answer questions and concerns, but most importantly it lends support 
and gives people essential information.
  Together the SBAA, the West Michigan SBA, the SBA of the Upper 
Peninsula Michigan, and the SW Michigan SB & Hydrocephalus Association 
work tirelessly to help the families of those living with Spina Bifida 
meet the challenges and enjoy the rewards of raising their children. I 
would like to thank the local chapters of SBAA in my State for their 
work in Michigan and other areas of the country. Michigan's chapters 
are partners in the SB Hurricane Emergency Life Support Program to help 
bring vitally needed supplies to hurricane victims in the Gulf Region 
and to put families affected by Spina Bifida in touch with others who 
can help them.
  Mr. Speaker, Spina Bifida is a birth defect that can happen to 
anyone. We do not know the exact cause of Spina Bifida; but research 
shows that if a woman takes 400 mcg of folic acid every day before she 
becomes pregnant,

[[Page 24422]]

she reduces her risk of having a baby with Spina Bifida or another 
neural tube defect by as much as 70 percent. The exact cause of the 
rest of the cases is unknown, but it is believed that genetics and 
environment may play a role. Spina Bifida is a neural tube defect that 
happens in the first month of pregnancy when the spinal column doesn't 
close completely. There are 60 million women at risk of having a baby 
born with Spina Bifida. Every day, an average of eight 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. Spina Bifida is not one condition; it is a multitude of 
problems that affect the mind, the body and the spirit. No two cases of 
Spina Bifida are ever the same.
  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 care attention and family 
care these people can live productive full lives with the help of 
braces and/or a wheelchair. There are breakthroughs every year that 
benefit the quality of life for those living with Spina Bifida. One of 
the keys to a better life for the 70,000 Americans who live with Spina 
Bifida is research. Our goals are to develop better treatment, better 
understanding of causes and new ways to prevent Spina Bifida.
  I am proud to be the co-chair of the Congressional Spina Bifida 
Caucus with Congressman Chris Smith and hope that all of my colleagues 
will join me to spread awareness about this disease. Together we can 
improve the quality of life of those living with Spina Bifida. I 
encourage my colleagues to join the caucus, which now has 52 members 
from both sides of the aisle.
  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 this Nation. We all owe a great 
debt to the SBAA for what they have accomplished.

                          ____________________