2023 Research Conference

We met in Madison, NJ for our first in-person conference, where we heard from the incredible speakers and researchers featured in the video below. Families also were able to meet each other (most for the first time) and participate in research data collection for SimonsSearchlight’s CTNNB1 Natural History Study and COMBINEDBrain’s CTNNB1 Biorepository Project.

2022 CTNNB1 Research Update – Tour the Lab

In lieu of a full conference, we streamed a research update directly from the lab of Dr. Michele Jacob.

2021 CTNNB1 Online Research Conference

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

2020 CTNNB1 International Online Research Conference

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.