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…Read More →
What is CTNNB1?
CTNNB1 Syndrome is a rare genetic disorder related to the CTNNB1 gene.
How We Help
By funding CTNNB1 research, we are creating a roadmap for a cure.
Get connected with other children and parents in the CTNNB1 community.
Help Find a Cure
Learn how to get involved to support research and spread awareness.
Our Family Connections list helps our CTNNB1 families connect more with each other in their area and while traveling. It also gives us a worldwide picture of cases and where we need to focus our outreach efforts for genetic testing and support.Join the List
Join Our Natural History Studies
More than 200 families have already started the process of joining the CTNNB1 Natural History Studies. Will you join this important effort?See How to Enroll
Listen to the latest CTNNB1 Connect and Cure Podcast
Hosted by Annie Wood, the CTNNB1 Connect and Cure Podcast is for anyone looking for information on CTNNB1 Syndrome. Tune in to listen to information, research stories, and ideas while connecting to other people in our community.Listen Now
Support CTNNB1 Research
Your donations are used to advance research on CTNNB1 Syndrome. Give today to create a bright future for our community of champions.Make a Gift
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…Read More →
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…Read More →