CTNNB1 Connect and Cure

• 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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• 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 Summit in Washington, DC. She shared with me her experience at the conference, as well as the impact families make when they provide data for our Natural History Study. Home - NORD Rare Summithttps://www.curectnnb1.org/#raredisease#syndrome

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• 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 process she went through to find her son's diagnosis and also how his other diagnosis have come into play with caring for her son.  Take a listen as Kelley shares the story of how she manages her son's needs and also her own.   https://www.curectnnb1.org/#raredisease#syndrome

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