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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ABA Therapy with Caitlin Powderly
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...
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NORD Breakthrough Summit Recap with Ashley Swift
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...
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Life with Multiple Diagnosis
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...
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Thanksgiving Episode
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 ...
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Global Genes Week in RARE Recap with Ashley Hamic
Nov. 15, 2024

Global Genes Week in RARE Recap with Ashley Hamic

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. Thi...
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IEPs with Keely Ward
Oct. 15, 2024

IEPs with Keely Ward

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 special...
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