We are a collaborative initiative led by Deborah Fidler (Colorado State University), Jayne Aiken (Colorado State University), and Jeffrey Moore (University of Colorado Anschutz Medical Campus) with the mission to bring together families, clinicians, researchers, and advocacy organizations working across the spectrum of Tubulinopathies to build a stronger, more connected national community.

Together with our affiliate organizations, we are committed to empowering families—connecting them with one another, providing clear resources for navigating diagnosis and care, and strengthening advocacy for research funding, clinical guidelines, and policy improvements.

We work to coordinate efforts across conditions, increase visibility of Tubulinopathies, and accelerate progress in research, diagnosis, and care. By fostering collaboration among experts in neuroscience, genetics, developmental science, imaging, and translational medicine, we aim to identify shared biological mechanisms that can drive new discoveries and therapeutic innovation.

We are building a unified network dedicated to advancing scientific understanding, improving clinical care, and ensuring that every individual and family affected by Tubulinopathies is supported by strong science, informed advocacy, and a connected community.