Category: News

Hello this is George from the UK. George is 6 years old and he is the happiest little boy! He always has the biggest smile on his face. George loves his family and going to his amazing school with his teachers and his friends . George enjoys sensory play, sensory massages, swimming, and his iPad…

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 iPad. She crawls when home but uses a wheelchair when we are not at home. She mostly prefers to stay…

Isabella is a bright-eyed 4yr old with a contagious laugh. She loves books, music, dancing, playing with her 3 older siblings and any activity that gets her outdoors or in the water. Bella’s favorite activity these days is to get in the laundry basket with the warm clothes and hand us clothes to fold, while laughing…

Marko is 9 years old and is currently in 4th grade. He loves drawing and playing with stuffed animals, creating cute role plays. He also loves playing outside, drawing in the ground, discovering rocks, plants and flowers. Marko has a very good appetite: he likes to try new flavors, but he especially loves hamburgers, pizzas,…

Attention CTNNB1 families! CTNNB1 Connect and Cure is excited to announce our partnership with Invitae’s Rare Patient Network on the Ciitizen platform. We are joining many other rare disease groups that have been using Ciitizen to build high-quality natural history data in a fraction of the time. Researchers and pharmaceutical companies have already used the…

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 nor do I brush it. He tries harder at everything than anyone I’ve ever met, and he has an infectious…

A wonderful fundraising event had about 180 people in attendance and they raised over $16,000! Read all the details from CTNNB1 mom Diana.