Spotlights

Meet Ezra

Ezra is 2 years old and was diagnosed with CTNNB1 in November of 2021. He loves to army crawl around the house and play with toys that’s make any noises or light up. He has…

Meet Emma

Emma was a medical mystery for almost 8 years. Appointment after appointment, yielded very little answers. MRI's came back normal. When she was 3 we met with genetics and the geneticist basically looked at us…

Meet Eleni and Ileana

Eleni (21) and Ileana (7) are both affected by CTNNB1 syndrome. They have three sisters ages 19, 15 and 11 who are not affected. Eleni loves SpongeBob, music, watching signing time and videos on her…

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