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 and told us nothing was wrong. We were extremely discouraged by this and at a loss. It took almost 5…
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.
Family Support
Get connected with other children and parents in the CTNNB1 community.
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CTNNB1 Connect & Cure was selected to be in this year's Million Dollar Bike Ride! Help support #TeamCTNNB1!
Learn MoreFamily Connections
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 ListJoin 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?
Learn How to EnrollListen 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.
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Join Simons Searchlight
Are you the caregiver of someone with CTNNB1 syndrome? Join our search for answers by signing up for Simons Searchlight, an international research program with the goal of accelerating science and improving lives for people with rare genetic neurodevelopmental disorders. Your unique experience could hold the clues that scientists need to find treatments and a cure!…
Read More →Meet Caleb
Caleb is a happy nine-year-old boy and can be seen with a smile on his face almost all the time! Since his diagnosis of CTNNB1, he has progressed in many ways, including physical, occupational, speech, and academic areas. His school provides him with a pull out math class, and a language arts program that helps…
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