[Congressional Record Volume 166, Number 179 (Tuesday, October 20, 2020)]
[Extensions of Remarks]
[Page E972]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                      SPINA BIFIDA AWARENESS MONTH

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                            HON. KEVIN HERN

                              of oklahoma

                    in the house of representatives

                       Tuesday, October 20, 2020

  Mr. KEVIN HERN of Oklahoma. Madam Speaker, I ask unanimous consent to 
address the House for one minute, and to revise and extend my remarks.
  I rise today in honor of National Spina Bifida Awareness Month to pay 
tribute to the numerous individuals and their families across our 
country living with this condition.
  Spina Bifida is a condition I am very familiar with. My sister and my 
niece both suffer from spina bifida. I know how it can impact a family.
  Spina Bifida is the nation's most common permanently disabling birth 
defect compatible with life. Because Spina Bifida stems from a hole in 
the spinal cord, a condition known as a neural tube defect, as the 
spinal column fails to close properly during development in the womb, 
it impacts virtually every major organ system. Children born with Spina 
Bifida typically undergo dozens of surgeries before they become adults. 
Adults living with Spina Bifida face myriad physical health, mental 
health, and other challenges, such as unemployment and limited access 
to quality primary and specialty care.
  There are currently an estimated 166,000 individuals in the United 
States living with Spina Bifida, approximately 65 percent of whom are 
adults. This disease is now witnessing its first generation of adults, 
an incredible milestone, considering that the original designation of 
Spina Bifida as a childhood condition meant that the vast majority did 
not experience life beyond youth.
  We have taken tremendous steps forward in recent years due to 
dedicated medical research, but there is so much we still don't know.
  Unfortunately, funding for Spina Bifida is limited. The only place in 
the federal government that is specifically studying this complex 
condition for children and adults is the Spina Bifida Program at the 
National Center on Birth Defects and Developmental Disabilities at the 
CDC through the National Spina Bifida Patient Registry and the Spina 
Bifida Collaborative Care Network
  People with Spina Bifida deserve no less than the rest of us as we 
age. We must ensure that adults with Spina Bifida can receive high-
quality medical care, and that researchers have the funds necessary to 
continue the development of treatments for spina bifida.

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