IV 

110TH CONGRESS 

2D SESSION H. RES. 1480 

Supporting the goals and ideals of National Spina Bifida Awareness Month. 

IN THE HOUSE OF REPRESENTATIVES 

SEPTEMBER 23, 2008 

Mr. SMITH of New Jersey (for himself, Mr. STUPAK, Mrs. SCHMIDT, and Mr. 

BURTON of Indiana) submitted the following resolution; which was referred to the Committee on Energy and Commerce 

RESOLUTION 

Supporting the goals and ideals of National Spina Bifida 

Awareness Month. 

Whereas Spina Bifida is the most common, permanently disabling birth defect; 

Whereas Spina Bifida occurs during the first month of pregnancy and leaves a permanent opening in the spinal column which subsequently impacts nearly every organ system; 

Whereas an estimated 70,000 to 130,000 people in the 

United States currently live with Spina Bifida; 

Whereas all women of childbearing age are at risk of having 

a pregnancy affected by Spina Bifida; 

Whereas an estimated 70 percent of neural tube defects, such 

as Spina Bifida, can be prevented if a woman consumes 


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adequate amounts of folic acid, a supplement found in 

most over-the-counter multivitamins and foods rich in 

folate, such as spinach, prior to becoming pregnant; 

Whereas Hispanic and Latina women are at the highest risk 

(1.5 to 2 times higher than the next highest risk population, non-Hispanic white women) for delivering a baby 

with Spina Bifida or another neural tube defect and are 

the least likely to consume sufficient amounts of folic 

acid prior to becoming pregnant; 

Whereas there are unprecedented medical complications associated with aging that a person with Spina Bifida faces 

because they are living beyond previous generations and 

care is complex, involving a myriad of clinical specialists; 

Whereas a 2005 nationwide survey of Spina Bifida clinics uncovered that 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 neurological, orthopedic, or urologic treatment regimens and interventions; 

Whereas the National Spina Bifida Program, administered by 

the Centers for Disease Control and Prevention, exists to 

improve the health, well-being, and overall quality of life 

for the individuals and families affected by Spina Bifida 

through the National Spina Bifida Patient Registry and 

critical quality of life research in Spina Bifida; 

Whereas the National Spina Bifida Patient Registry helps to 

improve the quality of care, reduce morbidity and mortality, increase the efficiency of care, decrease the cost of 

care, develop quality measures, treatment standards, and 

best practices, identify centers of excellence in Spina 

Bifida, evaluate the cost-effectiveness of Spina Bifida 


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treatment, and exchange evidence-based information between health care providers across the United States; 

Whereas the Spina Bifida Association is the only national voluntary health agency working for people with Spina 

Bifida and their families through education, advocacy, research, and service; and 

Whereas October is designated as ‘‘National Spina Bifida 

Awareness Month’’ to help increase awareness and prevention of Spina Bifida and to emphasize the need for increased funding to support evidence-based research and 

to enhance the quality of life of those living with Spina 

Bifida: Now, therefore, be it 

1 Resolved, That the House of Representatives— 

2 (1) supports the goals and ideals of ‘‘National 

3 Spina Bifida Awareness Month’’ as designated by 

4 the Spina Bifida Association; 

5 (2) recognizes the importance of highlighting 

6 the occurrence of Spina Bifida, bringing to light the 

7 struggles and successes of those who live with Spina 

8 Bifida, and advancing efforts to decrease the inci9 dence of Spina Bifida; 

10 (3) supports the ongoing development of the 

11 National Spina Bifida Patient Registry to improve 

12 lives through research and to improve treatment for 

13 children and adults; 

14 (4) recognizes that there is a continued need for 

15 resources to reduce and prevent disabling birth de16 fects like Spina Bifida; and 


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1 (5) commends the work of the Spina Bifida As2 sociation for its excellent work to educate, support, 

3 and provide hope for individuals and their families 

4 who are affected by Spina Bifida. 

Æ 


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