When it comes to fulfilling our mission, CTNNB1 Connect & Cure is well on its way. The incredible generosity of our donors has enabled us to fund innovative and much-needed research that offers hope to those looking for treatments and a cure for CTNNB1 Syndrome. At the same time, we’ve seen the power of bringing people together—families, doctors, researchers, and more—to focus on a common goal and support each other along the way.
“We don’t want to be around forever. Our goal is to find treatments to help our children now to be able to live their best lives possible. We also aim to create a cure so that one day parents don’t need to walk the winding path to a diagnosis that we embarked upon.”Lauren Cochran and Nicole Dashiell, ACCT Co-Founders
At a Glance
Approximately 430 children and adults diagnosed
5 continents represented in the CTNNB1 community
80 families attending in the first CTNNB1 research conference
221 families participating in the Patient Registry
More than $575,000 dollars raised for research
$327,000 in grants awarded to our funded research
Creating the Path to a Cure
Receiving a CTNNB1 Syndrome diagnosis shouldn’t be the end of the road. By funding groundbreaking medical research on this rare disease, we can help children and adults live their lives more fully with better treatments and, one day, a cure. To date, we’ve made significant progress, moving from a foundational Patient Registry and Natural History Study to drug trials in mouse models.
Established the Patient Registry and Natural History Study
Created a mouse model and bred a colony of CTNNB1 Syndrome mice
Identifying and testing drug treatments for safety and effectiveness