Spotlights

Caroline's Story

Our beautiful daughter, Caroline, was born in October of 2014 after a normal and healthy pregnancy. She was a happy and engaged baby, however by eight months she began to miss some of her developmental milestones and exhibited strabismus in one of her eyes.

Meet Andrew

Andrew Robinson was born on August 23, 2011. He was, to our knowledge, the first to be diagnosed with CTNNB1 Syndrome (at that time there wasn't a syndrome) in 2014 in the United States. We…

Meet Caleb

Caleb is a happy nine-year-old boy and can be seen with a smile on his face almost all the time! Since his diagnosis of CTNNB1, he has progressed in many ways, including physical, occupational, speech,…

Join the Fight

There's a way for everyone to get involved, whether you're a family member, friend, researcher, healthcare provider or other supporter.