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CTNNB1 Connect and Cure

Annie
CTNNB1 Connect and Cure
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  • 2025 Conference Update with Emily Amerson
    President of CTNNB1 Connect & Cure, Emily Amerson and Toni sat down to discuss all the details of the 2025 CTNNB1 Connect & Cure Conference in Boston, Massachusetts happening on July 10 - 12. Listen in to hear all the information on what to expect at the conference. They discuss the agenda, childcare, activities, meals, research opportunities and where to get more information. Conference Website:2025 CTNNB1 Conference – CTNNB1 Connect & CureResearch Website:Participate in Research – CTNNB1 Connect & CureNatural History Study Questions:[email protected]://www.curectnnb1.org/#raredisease#syndrome
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  • Introducing Director of Fundraising Crawford McWilliams
    Welcome Crawford McWilliams, our new CTNNB1 Connect & Cure Director of Fundraising. In this episode we get to know Crawford and her family, including her dragonfly Shreve. We discuss her fundraising efforts so far with CTNNB1, as well as some great ideas she has for future endeavors. https://www.curectnnb1.org/#raredisease#syndrome
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  • 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.  In this episode, she shares her family’s journey with CTNNB1, and how her professional background in speech therapy has shaped her approach to care and advocacy. [email protected]://youtu.be/b8lCCPP_s1Y?si=eURpndBKux_zuIu1https://www.curectnnb1.org/#raredisease#syndrome
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  • 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 additional resources for therapies. Intensive Therapy LinksPrivate Facebook Group: Pediatric Therapies Intensive ConnectionsTherapy Intensives in the USA - Google DriveTherapy Intensive Funding Organizations in the USATherapy Intensive Housing in the USA - Google DriveFind DMI Therapy Near Me - MyProvidersNAPA Center I World-Renowned Pediatric TherapyWelcome to the J.D. McCarty Center | J. D. McCarty Centerhttps://www.curectnnb1.org/#raredisease#syndrome
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  • 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 what types of things to look for in Applied Behavior Analysis (ABA) Therapy and red flags to look for. Caitlin also provided some helpful resources for families who are dealing with self-injurious behaviors in their children. If you have questions, Caitlin is happy to help answer [email protected]      Helpful Links:Trauma Informed Care, Restraint Free Approach - Ukeru Systems®*Caitlin recommends Ukeru first, as it is Trauma-Informed & Restraint-Free*Create a Safer Workplace with De-escalation Training | CPISafety-Care Crisis Prevention Training for PBIS & ABA Environments | QBSSafety Crisis Management Training-Professional Crisis ManagementTraining that Emphasizes Safety, Consistency, and Restraints as a Last Resort | Crisis Prevention Institute (CPI)https://www.curectnnb1.org/#raredisease#syndrome
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About 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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