CTNNB1 Connect and Cure

Annie
  • 5.0 (20)
  • KIDS & FAMILY

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.

  1. DEC 12

    Holiday Stress & Support with Stephanie Babcock

    Surviving the Season: Holiday Stress, Support, and Strength in the CTNNB1 Community In this episode, Toni sits down with licensed clinical social worker and CTNNB1 mom, Stephanie Babcock to talk about her family’s diagnosis journey, early intervention, and life with her son Jack. Stephanie shares practical, compassionate strategies for managing stress during the holidays, explains the “feelings thermometer,” and offers a look inside the first CTNNB1 caregiver support group series. This heartfelt conversation reminds every caregiver that they are capable, resilient, and not alone. https://www.curectnnb1.org/ #raredisease #syndrome

    54 min

  2. NOV 1

    A Lifetime of Love with Jana Brown

    In this inspiring episode, host Toni Paes sits down with Jana Brown, mom to 29-year-old Jared —one of the oldest known individuals living with CTNNB1 syndrome. Jana shares her family’s decades-long journey from early misdiagnoses to finally finding answers, the power of persistence, and the lessons learned along the way. From the impact of deep brain stimulation and service dogs to the importance of advocating for your child and yourself, Jana’s story is filled with resilience, humor, and heart. Whether you’re a newly diagnosed family or a long-time member of the CTNNB1 community, this conversation is a powerful reminder that, as Jana’s mother once said, “They’re the same child they were before the diagnosis.” https://www.curectnnb1.org/ #raredisease #syndrome

    49 min

  3. SEP 15

    Integrative Health with Fraser Bridgeman - Methylene Blue, Red Light Therapy, and Beyond

    In this episode of the CTNNB1 Connect & Cure podcast, host Toni Paes welcomes back Fraser Bridgeman to delve into discussions about Methylene Blue and its potential benefits for individuals with CTNNB1-related conditions. Fraser shares insights from her personal experience as a parent and Integrative Health Practitioner, highlighting how various therapies, including red light therapy and supplements, can support mitochondrial function and alleviate some symptoms. The conversation also touches on crucial topics such as managing constipation and digestive issues, advocating for children's health, and the importance of personalized approaches. Parents are encouraged to explore these strategies while working closely with their healthcare providers to find the best solutions for their unique circumstances. https://www.curectnnb1.org/ #raredisease #syndrome

    35 min

  4. JUN 1

    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 & Cure Research Website: Participate in Research – CTNNB1 Connect & Cure Natural History Study Questions: Jessica.Waxler@childrens.havard.edu https://www.curectnnb1.org/ #raredisease #syndrome

    30 min

  5. MAY 15

    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

    25 min

  6. MAY 1

    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.  MeganStanley392@gmail.com https://youtu.be/b8lCCPP_s1Y?si=eURpndBKux_zuIu1 https://www.curectnnb1.org/ #raredisease #syndrome

    50 min

  7. APR 15

    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 Links Private Facebook Group: Pediatric Therapies Intensive Connections Therapy Intensives in the USA - Google Drive Therapy Intensive Funding Organizations in the USA Therapy Intensive Housing in the USA - Google Drive Find DMI Therapy Near Me - MyProviders NAPA Center I World-Renowned Pediatric Therapy Welcome to the J.D. McCarty Center | J. D. McCarty Center https://www.curectnnb1.org/ #raredisease #syndrome

    43 min

  8. APR 1

    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 them! Caitlin.Powderly@gmail.com       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 | CPI Safety-Care Crisis Prevention Training for PBIS & ABA Environments | QBS Safety Crisis Management Training-Professional Crisis Management Training that Emphasizes Safety, Consistency, and Restraints as a Last Resort | Crisis Prevention Institute (CPI) https://www.curectnnb1.org/ #raredisease #syndrome

    40 min
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5
out of 5
20 Ratings

About

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.

Information

  • Creator
    Annie
  • Years Active
    2023 - 2025
  • Episodes
    36
  • Rating
    Clean
  • Copyright
    © 2025 CTNNB1 Connect and Cure
  • Show Website
    CTNNB1 Connect and Cure