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…
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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…
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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,…
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Mary Kate is a sweet and sassy 4 year old! She has a love for swimming, swinging, chicken nuggets, honey mustard, and her grandma! She is about to start her third year of preschool, and she loves going every day. Mary Kate goes to PT, OT, and Speech once a week, and she also does…
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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 learned how to self feed and LOVES all types of food! His fine motor skills are coming along but we…
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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…
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