CTNNB1 syndrome is a rare neurodevelopmental disorder caused by alterations in the CTNNB1 gene. The most prevalent symptoms are intellectual disability, developmental delays, speech delays, abnormal muscle tone, vision impairments, distinct facial features, sleep difficulties, and behavioral issues. Less common features include feeding difficulties, irregular growth, heart abnormalities, and epilepsy. These symptoms impact the quality of life not only for patients, but also for the whole family.
Why the Dragonfly? The dragonfly is a symbol of change, transformation, opportunity, adaptability, and self-realization. In many cultures, it is seen as a messenger of hope, a bringer of good luck, and a representation of new beginnings. Because of this, we call those affected by CTNNB1 syndrome our dragonflies!
Since CTNNB1 Connect and Cure is entirely run by volunteers, almost every single dollar raised go straight to our mission of finding treatments and a cure while connecting affected families. Whether you're sharing our campaign on social media, setting up a fundraising page, or donating, you are changing the lives of those affected CTNNB1 syndrome.
Visit our website to learn more about CTNNB1 Connect & Cure and the impact you will make when you join our campaign or make a donation. Thank you for flying with us towards a better future!