Meet CTNNB1 mom, Megan Hieb. For her daughter Lucy's first birthday she decided to do a GoFundMe page that has made over $112,000 for CTNNB1. See her video at https://www.youtube.com/watch?v=ei3uEtG5n-M.
Megan mentions in our podcast that she donated her fundraising money to the CTNNB1 Foundation. The CTNNB1 Foundation is based out of Slovenia, and was started by Špela, mother of Urban, who has CTNNB1. The goal of this foundation is to develop a gene therapy to cure CTNNB1 Syndrome. In just a few short days Špela is hosting the very first CTNNB1 International Conference in Spain. If you aren’t able to make the trip, you can join her conference virtually by registering online. https://ctnnb1-conference.org/register.php
CTNNB1 Connect and Cure is a United States 501c3 non-profit. We are the product of joining two US based CTNNB1 organizations, CTNNB1 Syndrome Awareness Worldwide or CSAW and Advancing CTNNB1 Cures and Treatments or ACCT. We are focusing on a small molecule intervention for CTNNB1, as well as raising awareness and connecting affected families. CTNNB1 Connect and Cure is sponsoring the natural history study with Columbia University and hosting a research conference this June in New Jersey.
Read more about CTNNB1 Connect and Cure here → https://www.curectnnb1.org/
Read more about the CTNNB1 Foundation here → https://ctnnb1-foundation.org/