I’m a psychologist who studies language development in kids with cleft lip and/or palate. Most children with cleft experience speech and language issues; my research helps doctors know how to identify early signs of problems and provide appropriate interventions. Since 2014, I’ve been developing a study with a researcher in Germany to explore how early surgeries and breathing issues may impact development. Results will guide surgery decisions and early detection of sleep apnea. In 2024, we were awarded a grant from the National Institutes of Health (NIH).

In May 2025, NIH abruptly announced they would no longer fund most foreign collaborations. The argument for this change stems from a perceived need for more oversight of research funds. For my team, this means that our colleagues in Germany will be removed from our project as of July – otherwise we will lose all our funding for the project. Although my team is small, a loss of funding would result in loss of employment for 3 people and fewer opportunities for students. For my patients, this means that while I can continue to run the study, I lose the expertise of the only person in the world who measures pre-speech development in infants with cleft. This hinders the insights my findings will have for doctors.

The relationship I spent ten years building and the time and energy invested in a project I believed in was destroyed by a short-sited policy change that was implemented without involving those impacted. The institution in Germany no longer trusts NIH and will not support further collaboration. I’ve called my congressional representatives weekly to express concerns about NIH and how it has endangered my work. The responses were disappointing; minimizing the damage that is being done and ignoring my specific concerns.

Children deserve research focused on their unique needs. Please, call your congressional representatives to support medical research in our state and across the country. Our smallest patients deserve advocacy from the biggest voices.