Leveraging brain science for impactful advocacy and policymaking: The synergistic partnership between developmental cognitive neuroscientists and a parent-led grassroots movement to drive dyslexia prevention policy and legislation

Abstract

Reading proficiency is crucial for academic, vocational, and economic success and has been closely linked to health outcomes. Unfortunately, in the United States, a concerning 63% of fourth-grade children are reading below grade level, with approximately 7%–10% exhibiting a disability in word reading, developmental dyslexia. Research in developmental cognitive neuroscience indicates that individuals with dyslexia show functional and structural brain alterations in regions processing reading and reading-related information, with some of these differences emerging as early as preschool and even infancy. This suggests that some children start schooling with less optimal brain architecture for learning to read, emphasizing the need for preventative education practices. This article reviews educational policies impacting children with dyslexia and highlights a decentralized parent-led grassroots movement, Decoding Dyslexia, which centers the voices of those directly impacted by dyslexia. It utilizes civic engagement practices, advocacy and lobbying on local, federal, and social media platforms, and strong partnerships with scientists to drive systems-level change in educational practices, leading to dyslexia prevention legislation across the U.S. The ongoing partnership continues to address the profound gaps between scientific findings and policymaking to drive systems-level change for contemporary challenges in educational practices within a learning disabilities framework.