This year, we will meet in Madison, NJ, for the Natural History Study, Family Meeting, and Research Conference! Find out more and register here.


Our second annual CTNNB1 Research Conference took place on Sunday, July 18. Hear about the progress being made by our funded research.


On July 25, Advancing CTNNB1 Cures and Treatments in collaboration with CTNNB1 Syndrome Awareness Worldwide hosted our first ever CTNNB1 International Research Conference with over 80 families attending online. 

Presenting speakers included Wendy Chung, MD PhD at Columbia University and Michele Jacob, PhD at Tufts University School of Medicine. Researchers from the following institutions were also in attendance: University of Washington, University of Hong Kong, Adelaide Medical School in Australia, Mt. Sinai in NYC, CHOP in Philadelphia, Jones Hopkins and Children’s Hospital of New York Presbyterian, Columbia University.