Arlington, VA – Nearly 150 people from across the country, including people living with Spina Bifida, their parents and caregivers, and medical professionals, participated in 86 meetings with U.S. House and Senate staff members as part of the Spina Bifida Association’s annual “Teal on the Hill” advocacy day March 1. 

During their meetings, advocates shared their experiences living with Spina Bifida and requested an increase of $4 million a year for the National Spina Bifida program at the U.S. Centers for Disease Control and Prevention (CDC). This increase amounts to $24 for every person in the U.S. currently living with Spina Bifida. Funding would go to increase support for Spina Bifida Clinics across the country, additional training support for clinicians, and more research into the areas identified by people living with Spina Bifida as being most critical to improving their quality of life. 

In addition, advocates participating in Teal on the Hill asked Members of Congress to support the bi-partisan Work Without Worry Act, currently being considered in both the House and Senate. This bill would ensure Americans with disabilities who are eligible for the Disabled Adult Child benefit through Social Security do not lose their benefits when entering the workforce, eliminating the need to choose between dignity through work or meeting one’s health care needs.  

“The personal experiences that make real the triumphs, challenges and needs of those living with disabilities are important for our legislators to hear,” Sara Struwe, SBA President and CEO, said. “Teal on the Hill 2022 was a great success. We look forward to continuing our advocacy for increased funding and support of the Work Without Worry Act as we work to build a better and brighter future for those impacted by Spina Bifida.” 

More information on how to support SBA’s advocacy agenda can be found here.

Spina Bifida is the most common permanently disabling birth defect that is associated with life, affecting nearly 166,000 individuals in the U.S. Nearly 70 percent of those individuals are adults and currently lack access to the specialized medical care they need to thrive. 

 

About the Spina Bifida Association

The Spina Bifida Association (SBA), founded in 1973, is the only national voluntary health agency dedicated to Spina Bifida. The mission is to build a better and brighter future for all those impacted by Spina Bifida. Fueled by dedicated healthcare providers, parents, adults, caregivers, and others, we are committed to helping people live longer, healthier lives through research, education, clinical care, network building, and advocacy. For more information, visit our website at www.spinabifidaassociation.org or call 800-621-3141.