[Congressional Record (Bound Edition), Volume 148 (2002), Part 15]
[Senate]
[Pages 21023-21024]
[From the U.S. Government Publishing Office, www.gpo.gov]




                 NATIONAL SPINA BIFIDA AWARENESS MONTH

 Mr. ALLEN. Mr. President, I rise today to recognize that 
October is National Spina Bifida Awareness Month and to pay tribute to 
the more than 70,000 Americans, and their family members, who are 
currently affected by Spina Bifida, the nation's most common, 
permanently disabling birth defect.
  Spina Bifida affects more than 4,000 pregnancies each year, with more 
than half ending tragically in abortion.

[[Page 21024]]

Each year 1500 babies are born with Spina Bifida, a terrible condition 
in which the spine does not close completely during the first few weeks 
of pregnancy. The result of this neural tube defect is that most babies 
suffer from a host of physical, psychological, and educational 
challenges, including paralysis, developmental delay, numerous 
surgeries, and living with a shunt in their skulls in an attempt to 
ameliorate their condition. After decades of poor prognoses and short 
life expectancy, due to breakthroughs in research, combined with 
improvements in health care and treatment children with Spina Bifida 
are now living long enough to become adults with the condition. 
However, with this extended life expectancy people with Spina Bifida 
now face new challenges education, job training, independent living, 
health care for secondary conditions, aging concerns, and other related 
issues.
  Therefore, we must do more to ensure a high quality of life for 
people with Spina Bifida so more families choose the blessing and joy 
of having a child with this condition. Fortunately, Spina Bifida is no 
longer the death sentence it once was and now most people born with 
Spina Bifida will likely have a normal or near normal life expectancy. 
The challenge now is to ensure that these individuals have the highest 
quality of life possible.
  One of my constituents, sixteen year-old Gregory Pote, is one of the 
70,000 Americans who live with Spina Bifida. Gregory had the pleasure 
of visiting Capitol Hill this summer to hear his uncle testify before 
the Senate Subcommittee on Children and Families' hearing on ``Birth 
Defects: Strategies for Prevention and Ensuring Quality of Life.'' 
Greg's uncle, Hal Pote, President of the Spina Bifida Foundation, 
testified that one of his proudest moments was the morning that their 
family awoke before the crack of dawn and gathered together on the side 
of a street in Philadelphia to watch Greg carry the Olympic torch 
earlier this year. Despite this amazing accomplishment, it is important 
to note that at the age of sixteen Greg has already had more than 
twenty surgeries. It is my understanding that double-digit numbers for 
surgeries unfortunately are not unusual for children living with this 
condition. Therefore, it is essential that we do more to prevent and 
reduce suffering from Spina Bifida and take all the steps we can to 
ensure that Greg and the 70,000 other Americans like him who live with 
Spina Bifida every day can have the most productive and full lives 
possible.
  I would like to commend the Spina Bifida Association of America, 
SBAA, an organization that has helped people with Spina Bifida and 
their families for nearly 30 years, works every day, not just in the 
month of October, to prevent and reduce suffering from this devastating 
birth defect. The SBAA puts expecting parents in touch with families 
who have a child with Spina Bifida, and these families answer questions 
and concerns and help guide expecting parents. The SBAA then works to 
provide lifelong support and assistance for affected children and their 
families.
  During the month of October the SBAA and its chapters make a special 
push to increase public awareness about Spina Bifida and teach 
prospective parents about prevention. Simply by taking a daily dose of 
the B vitamin, folic acid, found in most multivitamins, women of 
childbearing age have the power to reduce the incidence of Spina Bifida 
by up to 75 percent. That such a simple change in habit can have such a 
profound effect should leave no question as to the importance of 
awareness and the impact of prevention.
  In addition, I would like to commend my Senate colleagues for 
allocating $2 million in much-needed funding for a National Spina 
Bifida Program at the National Center for Birth Defects and 
Developmental Disabilities, NCBDDD, at the Centers for Disease Control 
and Prevention, CDC, to ensure that those individuals living with Spina 
Bifida can live active, productive, and meaningful lives. I also am 
very proud that we in the Senate recently passed by unanimous consent 
the bipartisan ``Birth Defects and Developmental Disabilities 
Prevention Act of 2002,'' which takes many critical steps that will 
work to prevent Spina Bifida and to improve quality of life for 
individuals and families affected by this terrible birth defect.
  I again thank the SBAA and its chapters for their commitment to 
improve the lives of those 70,000 individuals living with Spina Bifida 
throughout our Nation. I also wish to thank two nationally respected 
television journalists, Judy Woodruff and Al Hunt for their caring, 
meaningful leadership in this important cause. In conclusion, I wish 
the Spina Bifida Association of America the best of results in its 
endeavors, and urge all of my colleagues and all Americans to support 
its important efforts.

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