Spotlights

Meet Ford

Ford has piercing blue eyes and a wild mop of curly hair, so blonde it looks white. It reminds me a lot of Doc's hair in Back to the Future. I've never cut his hair…

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…

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…

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