Dear CTNNB1 community,
This month’s newsletter brings several important milestones and updates from across the CTNNB1 community. We share exciting progress from the GAIN clinical trial, including the successful treatment of the second patient in the world with our investigational gene therapy URBAGEN intended to treat CTNNB1 syndrome. 
We also reflect on recent community activities, from the ESGCT Summer School in Coimbra to the first round of Dragonfly NHS clinical examinations in Ljubljana.
Inside, you will also find important clarifications regarding the difference between the Dragonfly Natural History Study and the GAIN Clinical Trial, updates about conference childcare services, and ways to support our mission through fundraising and partnerships. 
Finally, we are honored to feature a deeply moving story written by Robbin Verwest, whose words capture the realities, emotions, strength, and love that shape life within the CTNNB1 community. 
The CTNNB1 Team
👉 Download the May 2026 Newsletter (PDF)
Best,
The CTNNB1 Team