CTNNB1 Connect and Cure

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.

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Recent Episodes

April 30, 2025

Speech Therapy with Megan Stanley

Megan Stanley is a Pediatric Speech and Language Pathologist, as well as mom to dragonfly Lilliana. With her unique perspective as both a clinician and a parent, Megan brings a heartfelt and informed voice to our community. ...
April 14, 2025

Intensive Therapy at Jd McCarty Center with Dan & Toni

Bella recently completed a 3-week Intensive Therapy session at the JD McCarty Center in Norman, Oklahoma. Dan and Toni discuss the experience and what it was like for anyone else who may be interested. They also discuss some ...
April 1, 2025

ABA Therapy with Caitlin Powderly

Caitlin Powderly is a Board-Certified Behavior Analyst (BCBA) and mom to Tyler, who has CTNNB1 syndrome. She and I talked about how Tyler came into her life, and the impact that has had on her professional life. She explained...
March 8, 2025

NORD Breakthrough Summit Recap with Ashley Swift

Ashley Swift is the Chief Communications Officer for CTNNB1 Connect & Cure, as well as mom to dragonfly Evelyn. In October of 2024, Ashley was able to attend the National Organization for Rare Disorders (NORD) Breakthrough Su...
Jan. 30, 2025

Life with Multiple Diagnosis

So many of our kids have a common connection, CTNNB1, but many of our kids have more than just CTNNB1. I interview Kelley Merwin about her son's multiple diagnosis and what she does for self-care. Kelley talks about the pro...
Nov. 26, 2024

Thanksgiving Episode

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 ...