[Congressional Record Volume 151, Number 129 (Thursday, October 6, 2005)]
[Extensions of Remarks]
[Pages E2038-E2039]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




  HONORING THE SPINA BIFIDA ASSOCIATION OF AMERICAN AND COMMEMORATING 
            OCTOBER AS NATIONAL SPINA BIFIDA AWARENESS MONTH

                                 ______
                                 

                            HON. DAN BURTON

                               of indiana

                    in the house of representatives

                       Thursday, October 6, 2005

  Mr. BURTON of Indiana. Mr. Speaker, I rise today to pay tribute to 
the Spina Bifida Association of America (SBAA)--an organization that 
has helped those living with and affected by this debilitating disease 
for over 30 years--and recognize the observance of October as National 
Spina Bifida Awareness Month, and to pay tribute to the more than 
250,000 Americans in the Spina Bifida Association of America Community.
  Currently, it is estimated that approximately 70,000 people in the 
United States are living with Spina Bifida, the most common permanently 
disabling birth defect. For those of my colleagues who may be 
unfamiliar with this disease, Spina Bifida is the broad term used to 
describe a series of neural tube defects that occurs in the first month 
of pregnancy when the spinal column doesn't completely close. In fact, 
there are three different distinct forms of Spina Bifida, often 
referred to as Occulta, Meningocele and Myelomeningocele.
  The Occulta form of Spina Bifida is often referred to as hidden Spina 
Bifida, as the spinal cord and the nerves are usually normal and there 
is no opening on the back. Instead, in this usually harmless form of 
Spina Bifida, there is a small defect or gap in a few of the small 
bones (vertebrae) that make up the spine. There may be no motor or 
sensory impairments evident at birth, but subtle, progressive 
neurologic deterioration often becomes evident in late childhood or 
early adulthood.
  The Meningocele form of Spina Bifida is when the protective coating 
covering the spinal cord (meninges) push outward through an open part 
of the spine like a sac. Cerebrospinal fluid fills the sac, but there 
is usually no nerve damage. Individuals may suffer minor disabilities 
at the onset, but new problems can develop later in life. Finally, the 
Myelomeningocele form of Spina Bifida--the most serious type of Spina 
Bifida, which causes nerve damage and more severe disabilities--occurs 
when the meninges and the

[[Page E2039]]

spinal nerves both come through an open part of the spine.

  While medical science has not yet discovered the exact cause of Spina 
Bifida--it is a birth defect that can strike anyone--we do know that a 
woman taking 400 mcg of folic acid whether as part of a multivitamin/
drug formula or alone, prior to and in the early weeks of pregnancy, 
reduces her risk of having a baby with Spina Bifida or another neural 
tube defect by as much as 70 percent. That is why since February 1996 
and at the direction of Food and Drug Administration, all U.S. food 
manufacturers started adding folic acid to most enriched breads, 
flours, corn meals, pastas, rice and other grain products to reduce the 
risk of birth defects in newborns. Following the fortification of 
cereal grains, the incidences of these types of birth defects decreased 
by about 20 percent.
  However, surveys and research suggest that only about 30 percent of 
American women consume the daily recommended amount of folic acid. As a 
result, today in America there are still some 60 million women at risk 
of having a baby born with Spina Bifida, and everyday, an average of 8 
babies are affected by Spina Bifida or a similar birth defect of the 
brain and spine. Annually, approximately 3,000 pregnancies are affected 
by these birth defects.
  These devastating birth defects cannot be cured, so they must be 
prevented, and the evidence of folic acid's benefits as a preventative 
is extremely compelling. The solution is education and awareness. Since 
1973, the Spina Bifida Association of America--the nation's only 
organization solely dedicated to advocating on behalf of the Spina 
Bifida community--has been leading the charge. Through their almost 60 
chapters in more than 125 communities, the SBAA has helped bring 
thousands of expectant parents together with parents of children who 
suffer from the disease. This type of one-on-one interaction helps 
concerned parents get answers to their questions, but most importantly 
it lends support and gives people essential information and hope. 
Thanks to SBAA's efforts, millions of people have received vital 
information about Spina Bifida and how it affects those who live with 
it; countless women have learned about the importance of taking folic 
acid prior to pregnancy to reduce the risk of Spina Bifida and other 
neural tube defects; and, countless individuals afflicted with Spina 
Bifida have gotten the help they need to live life to its fullest and 
achieve their full potential.
  A very special lady who works with me in my office, Ms. Donna Jones, 
in fact happens to have Spina Bifida. Since the day she came on board, 
she has done a great job and helped me understand first-hand the 
challenge of living with this disease. Ever since I've known her, Donna 
has always believed that change can come if even one individual 
believes in themselves and strives to make a difference no matter how 
hard the challenge. And she has never let the challenge of living with 
her disease slow her down or stop her from pursuing her dream of making 
a difference and advocating for persons with disabilities. I was happy 
to be able to give her the opportunity to come to Washington and try to 
make her dream a reality; and I have no doubt that because of her 
tireless efforts to raise awareness of Spina Bifida on Capitol Hill, 
the incidence of Spina Bifida will decrease and fewer children will 
have to endure the road she has had to travel.

  Even with all the challenges she faces, I have never seen Donna 
without a smile on her face. She definitely has an infectious love of 
life, and when the world looks at her it doesn't see a person 
unobtrusively going through the motions of everyday life, it sees an 
outspoken, dynamic and active person willing to get involved in the 
issues that she cares about, particularly those that affect disabled 
individuals in our country.
  I believe that Donna is perhaps the best advocate the Spina Bifida 
community could have on Capitol Hill because each and every day, she 
serves as living proof that someone with Spina Bifida need never take a 
back seat to anyone. I wish more young people in America had the same 
fire and commitment as Donna. In fact, it is largely thanks to Donna 
that I became aware of and joined the Congressional Spina Bifida 
Caucus. I hope that many of my colleagues listening today will also 
join the Caucus and work to spread awareness and education about this 
disease. Working together we can do so much to improve the quality of 
life to those living with Spina Bifida.
  Just this past Wednesday, October 5, 2005, the SBAA's held its 17th 
Annual Gala here in Washington to benefit the Association and its many 
chapters around the nation. The event was a tremendous success and the 
funds raised will help the SBAA and its chapters around the country 
continue the good work they do in preventing more occurrences of this 
devastating disease, and reducing the suffering of those 70,000 
Americans living with Spina Bifida. I firmly believe that we owe SBAA a 
great debt for what they have accomplished.
  In my home State of Indiana, SBAA, the Spina Bifida Association (SBA) 
of Central Indiana and the SBA of Northern Indiana have formed a 
collaborative partnership to make a difference in the lives of Hoosier 
families living with Spina Bifida by helping them meet the challenges 
and enjoy the rewards of raising their children. In addition, in 
response to the devastation of the Gulf region of this country by 
Hurricanes Katrina and Rita, Indiana's Spina Bifida chapters answered 
the call by participating in the Spina Bifida Hurricane Emergency Life 
Support Program (SBHELSP). Established by the SBAA, the SBHELSP, 
assisted in getting vitally needed supplies to victims of the 
hurricanes and to put displaced families affected by Spina Bifida in 
touch with others who understand their special needs and can help them. 
I cannot say enough good things about the hard work, dedication and 
compassion of the volunteers and staff at all the Indiana chapters of 
SBAA; I can only thank them on behalf of all Hoosiers for all they have 
done and all that they will continue to do.
  SBAA and its local chapters are making a difference one life at a 
time. With National Spina Bifida Awareness Month upon us again, I would 
say to my colleagues in closing that the time for us to start making a 
difference is now.

                          ____________________