The CTNNB1 Connect and Cure Podcast is for anyone looking for information on CTNNB1. Listen to the latest information, research, stories, and ideas while connecting to other people in the CTNNB1 community.
Annie, Dan and I were able to take a little time to catch up before the holidays start. We reflect on what makes Thanksgiving different with our CTNNB1 children and how we navigate that. We also spent some time talking about…
Every year Global Genes hosts a Week in RARE, which combines the RARE Health Equity Forum and RARE Advocacy Summit. This conference gathers and engage rare disease advocates and leaders in the same space for conversation. Th…
Many of us with children in the US school system have probably heard the term IEP. This Individualized Education Program (IEP), regulated by the US Department of Education, is for each public-school child who receives specia…
Welcome back to the Connect and Cure Podcast! I’m thrilled to have you here today. Producing this podcast has been a deeply rewarding journey, however it’s a lot to do alone. To make sure I’m bringing you the best content an…
Shortly after Preston’s diagnosis I learned about Sibshops. Sibshops are in person or virtual events where special needs siblings will meet other sibs, have fun, laugh, talk about the good and not-so-good parts of having a s…
If you are on Facebook or Instagram I am sure you have seen many of our CTNNB1 children at NAPA, but if any of you are like me you’ve wondered what is it? What do they do there? How do I get my child there? NAPA stands for N…