As you may have heard, many of our Spina Bifida partners in the federal government have been directly impacted by the reduction in force (RIF) layoffs within the U.S. Department of Health and Human Services (HHS) over the past week, specifically at the National Center for Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC).

We are proud of the relationships SBA has cultivated and actively maintained with our federal agency partners. We are deeply concerned about the activities that may cease, specifically the National Spina Bifida Patient Registry (NSBPR), the Urologic Management to Preserve Initial Renal Function (UMPIRE) Protocol, and the Spina Bifida Collaborative Care Network (SBCCN) and the void of expertise in these agencies overseeing these programs essential to the Spina Bifida community. We are anxious about the impacts these decisions will have on the estimated 166,000 Americans living with Spina Bifida and their families and caregivers. We are worried about what this will mean for clinicians working tirelessly to advance the research that has born witness to the first generation of adults living with one of the most common, permanently disabling birth defects compatible with life.

What we do NOT yet know:

We do not have a full grasp on what this means for Spina Bifida programs, activities, grants, and the future of these agencies.

We do not know if planned research will proceed or how long it may be delayed.

We do not know if existing grantees will be able to continue their work under the previously agreed to terms and budgets. 

Please feel free to share your concerns and thoughts with us at [email protected]. We appreciate your sharing your thoughts with us to keep us informed of the impact of these changes. We will continue monitoring the situation and communicate to the best of our ability. Thank you for all you do for our Spina Bifida community.