For Immediate Release

Contact: Sheliah Roy

[email protected]

Subject: House Appropriations Committee Approves $2 Million Funding Increase for the National Spina Bifida Program

[Arlington, VA, May  8, 2019] Today, The United States House of Representatives Appropriations Committee approved the Fiscal Year 2020 Labor, Health and Human Services Education (Labor HSS) funding bill. The Bill included a $2 million increase for the National Spina Bifida Program housed at the Centers for Disease Control and Prevention (CDC), bringing the total to $8 million. The program had previously been funded at $6 million for the past five years.

The increase in funding will allow the Spina Bifida Association together with the CDC to implement and expand on our many advocacy priorities. These currently include;  research into the cause of sudden unexplained deaths of adults in the Spina Bifida (SB) community; determine the number of people living with Spina Bifida in the United States, broaden clinic participation in the National Spina Bifida Patient Registry, develop studies on social determinants of health within the National Spina Bifida Patient Registry participants, create a protocol for improving the health of children who have Spina Bifida with Hydrocephalus and research barriers to transition to adult care, and analyzing models for care delivery for adults with Spina Bifida.

The bill now goes to the Senate Labor HSS Appropriations subcommittee for approval.

About Spina Bifida Association

The mission of the Spina Bifida Association is to promote the prevention of Spina Bifida and enhance the lives of all affected. We work to make a practical, positive difference every day, helping to improve care so individuals can enjoy life to the fullest. The Spina Bifida Association (SBA) provides information, resources, assistance, advocacy, and connections to help all those affected by Spina Bifida.

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