Spina Bifida Awareness Month

Floor Speech

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Mr. HERN. Mr. Speaker, 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. 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, and 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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