Dear CTNNB1 Community,
We are beyond thrilled to share exciting news from a groundbreaking research project fully funded by CTNNB1 Connect and Cure — made possible by your fundraising efforts and generosity!
Thanks to this incredible community, we were able to support a study led by Dr. Clement Chow at the University of Utah, where his lab screened FDA-approved drugs using a fruit fly model of CTNNB1 Syndrome.
The Big Discovery
Out of hundreds of FDA-approved drugs tested, 28 drugs improved symptoms in the CTNNB1 fly model! This is a huge step forward!
Important Note
While we work to investigate the drugs that improved the symptoms of the fly and the potential translation of those results to humans, we want to inform the community of two very common drugs that were found to worsen the symptoms of the fly.
- Dexibuprofen (also known as (S)-(+)-ibuprofen)
- Lansoprazole (Prevacid, Adoption, Lanzor, Limpid, Takepron, Opine, Zoton)
What This Means
It is important to emphasize that these findings come from a fly model, not from human studies. The research is at an early stage, and more studies are needed to understand if these drugs need to be avoided for those with CTNNB1 Syndrome.
What Should You Do?
We, as a patient advocacy organization, are not able to provide medical advice. If you have questions about medications for your child, we strongly encourage you to discuss them directly with your healthcare provider. There are alternatives to each of these drugs. We want you to have this information so that you can make your own choices for your family. Please consult your doctor when making medication decisions.
Thank You, CTNNB1 Community!
This breakthrough is powered by you.
Your passion, your fundraising, your voice — it all makes a real difference. Because of you, researchers have the support they need to push boundaries and find answers. You’re not just backing science — you’re making it possible.
We remain committed to keeping our community informed of new developments in CTNNB1 research and will continue to share updates as more information becomes available.
