Our Story

In 2017, CTNNB1 Syndrome Awareness Worldwide (CSAW) was founded as the first non-profit to address CTNNB1 Syndrome, with just 30 known cases globally. CSAW aimed to raise awareness, provide education, and support individuals with CTNNB1 Syndrome. They established key initiatives, including the creation of a website, the adoption of the dragonfly symbol, the declaration of the awareness day (July 25), and regular communication as a community, focusing on connecting families and increasing awareness. As awareness grew, Advancing CTNNB1 Cures & Treatments (ACCT) was formed in 2019, focusing on research. Together, CSAW and ACCT organized online conferences, leading to a face-to-face gathering in 2022. Recognizing shared goals, we merged in 2023 under the new name CTNNB1 Connect and Cure, aiming to enhance our impact while streamlining operations.

Who We Are

Our team is made up of dedicated parents, business professionals, healthcare specialists, researchers, and volunteers.

Our Impact

To date, our organization has raised more than $575,000 for research. See how our mission has been put into action through innovative techniques that build our knowledge of the CTNNB1 gene and the path to a cure.