Spina Bifida Association CEO Sara Struwe joins the AAHD Board of Directors

Press Release

Rockville, MD – The American Association on Health and Disability (AAHD) has announced the appointment of Sara Struwe to their Board of Directors. Ms. Struwe is the President and CEO of the Spina Bifida Association (SBA), an organization that serves approximately 124,000 people[i] living with Spina Bifida across the United States. She is a vocal advocate for the disability community who has championed the need for community engagement in disability and health research. Under her leadership at SBA, their organization developed their first patient-led research agenda to shape the organization’s research program.

Ms. Struwe is the second addition to AAHD’s Board in 2024, following Theo Braddy’s appointment in January. The team currently includes nine directors engaged in cross-disability work from across the country.

AAHD’s Executive Director, Karl Cooper, celebrated this recent addition: “We are eager to bring Sara’s expertise in community-engaged disability research and public health to the AAHD Board of Directors. We welcome the opportunity to broaden our network of partners involved in cross-disability advocacy to advance health care for our communities.”

As a long-time community advocate, Ms. Struwe emphasized the importance of disability inclusion in public health work: “people with disabilities represent over 25% of the population and must be a primary consideration in public health efforts if we want to achieve health equity.” This is a vital policy priority that aligns with AAHD’s work to integrate disability and health into the national public health agenda.

About Sara Struwe

Sara Struwe earned her Bachelor of Public Administration from the University of Mississippi in 1984. In 2001, she earned a Master’s in Public Administration from the University of Dayton. Ms. Struwe joined the Spina Bifida Association (SBA) in late 2009 as the Chief Operating Officer. In 2014, Ms. Struwe was appointed the SBA’s President and CEO where she led SBA’s efforts to improve the health care for the growing number of adults with Spina Bifida and develop the new Spina Bifida Collaborative Care Network (SBCCN), a system which monitors, tracks and evaluates care provided in Spina Bifida clinics and other health care settings.

Under her direction, SBA has established a new plan to address the health disparity adults with Spina Bifida face. The SBCCN developed the necessary relationships to adequately communicate between the SBA, clinics, health care professionals, people with Spina Bifida and their families, organizations supporting people with Spina Bifida, and SBA Chapters. In addition, the SBCCN works to identify the research needs for the Spina Bifida community.

As the President & CEO of the SBA, her mission has been to further engage the Spina Bifida community in all aspects of the work of the organization. She has focused on volunteer development and engagement in the plans and the work of the organization. Under her direction, organizational volunteer involvement has almost tripled and volunteers advise the organization on every aspect of the organization, and a primary focus has been to involve adults with Spina Bifida in all areas of organizational work—research, clinical care, advocacy, education and support

In 2022, Ms. Struwe conceptualized and started the National Partnership for Pediatric to Adult Care Transition (NPPACT), a multi-disciplinary group of stakeholders committed to advocating for federal programs, investments, and policies, which will help ensure smoother care transitions, including developing and maintaining adult care clinics specifically designed to support adults living with serious, life-threatening, and disabling conditions that were initially diagnosed, treated, and managed in childhood.

Additionally, under her leadership, SBA changed its mission and vision to better reflect community expectations and needs; this was accomplished through the work of volunteers from the Spina Bifida community.  SBA conducted qualitative and quantitative research to determine the issues impacting daily life of people with Spina Bifida. This activity resulted in the first patient-developed research agenda for the organization.

About the American Association on Health and Disability: AAHD is dedicated to ensuring health equity for children and adults with disabilities through policy, research, education, and dissemination at the federal, state and community level.  AAHD strives to advance health promotion and wellness initiatives for people with disabilities. AAHD’s goals are to reduce health disparities between people with disabilities and the general population, and to support full community inclusion and accessibility.


[i] Briggs, V. G. (2022). Population Estimates of People with Spina Bifida in the United States in 2020. MedRxiv. https://doi.org/10.1101/2022.02.03.22268639