We connect families, share resources, and champion research for those affected by TUBA1A. You’re not alone—together, we build a brighter future.
The Colorado State University Developmental Disabilities Research Lab is investigating neurodevelopmental outcomes associated with tubulinopathy conditions in a project called “Project You-TUB: Tubulinopathy and You!” They are focusing on the development of social and communication skills, motor skills, and activities of daily living in people with Tubulinopathy. See link below for more info. To participate in the research study, please fill out this survey: Welcome to Project You-TUB: Tubulinopathy and You!
Many of those living with TUBA1A also experience seizures and the Epilepsy Foundation offers a free online training to help educate you on what seizures may look like and what to do if someone has a seizure.
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