Maria Grigos serves on the Apraxia Kids Board of Directors and Professional Advisory Counsil (PAC). Additionally, Dr. Grigos is a professor and chair in the Department of Communicative Sciences and Disorders at New York University.

How has Apraxia Kids changed the research on CAS?
Apraxia Kids has played a pivotal role in shaping the landscape of CAS research. In earlier years, research on CAS was limited, characterized by smaller studies, inconsistent diagnostic criteria, and a general lack of visibility in the broader scientific community. Apraxia Kids has helped advance the field by bringing attention, credibility, and coordination to these efforts. Through funding studies, connecting researchers with families, and fostering collaboration between clinicians and academics, the organization has helped drive more rigorous, focused, and impactful research on CAS.

What did research look like 25 years ago?
Twenty-five years ago, research on CAS was growing but still marked by uncertainty. Early researchers laid important groundwork, but many of the studies were small, often based on case reports, and there wasn’t much agreement on how to even define or diagnose CAS. That made it really hard to compare results or build a solid foundation for treatment. For families, it often meant facing a confusing path with few clear answers. It was around this time that the field began to recognize the need for more consistent criteria, larger studies, and a more unified effort to better understand and support children with CAS.

What does research look like now? Who is involved with a research study?
CAS research is far more collaborative, rigorous, and inclusive today than it was in the past. We’re now seeing larger, multi-site studies that use standardized assessments and well-designed clinical trials to better understand how CAS works, how to diagnose it, and what treatments are most effective. These research teams often include a wide range of experts, speech-language pathologists, geneticists, neurologists, statisticians, and more, which really shows how complex and interdisciplinary the study of CAS has become. Apraxia Kids has been a strong advocate for this kind of work, especially when it comes to supporting the whole child by addressing not only a child’s speech, but also their social, emotional, and learning needs.

One of the most exciting shifts is that families and individuals with lived experience are now more involved than ever. They’re not just participants. They’re advisors, advocates, and thought partners, helping to shape the research itself. That’s something Apraxia Kids has truly led the charge on, making sure that family voices are front and center in research that reflects the real needs of children with CAS.

What part(s) does Apraxia Kids play in this process?
Apraxia Kids acts as a bridge. The organization helps researchers connect with families who want to be part of studies, shares research findings in family-friendly ways, and supports early-career researchers through funding and visibility. It’s also one of the few organizations that prioritizes research specifically on CAS. That focus means both funding and energy are going toward real breakthroughs in how we understand and treat this specific population.

How do you find research participants?
We connect with research participants through long-standing relationships with SLPs, clinical partners, and through outreach on social media. The Apraxia Kids community is a huge support as families who attend conferences, access the website and engage on social media, can learn about research opportunities. Researchers often work with Apraxia Kids to share calls for participation and explain why a study matters. Families are incredibly generous with their time and stories because they know how important research is for improving care.

Why is research important?
We’ve come a long way, but we’re still learning. CAS is complex and every child presents a little differently, and what works for one child may not work for another. We need research to understand the underlying causes, refine our treatments, and better support children and families across the lifespan. Research is how we move from good to great in terms of therapy, support, and long-term outcomes.

What important pieces would you like to see come out of the next 25 years?
I’d love to see more research on individual response to treatment, specifically, which approaches are most effective for which children and why. We also need better tools for early diagnosis and greater inclusion of diverse populations in studies. Long-term outcomes are another area we’re just beginning to explore, what happens as children with CAS grow into teens and adults? Of course, we still need to deepen our understanding of the neurological and genetic underpinnings of CAS.

Why does Apraxia Kids fund research?
Funding makes research possible. It helps researchers launch pilot studies, collect data, and ask new questions that might not be funded elsewhere. Apraxia Kids doesn’t just support the science, it accelerates it. Since we’re focused specifically on CAS, every research dollar goes toward deepening knowledge and improving lives for this community.