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PODCAST

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.

kids & family

All Episodes

48:33

A Lifetime of Love with Jana Brown

CTNNB1 Connect and Cure ·

2025/11/01

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, humo...

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35:03

Integrative Health with Fraser Bridgeman - Methylene...

CTNNB1 Connect and Cure ·

2025/09/15

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 tou...

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29:58

2025 Conference Update with Emily Amerson

CTNNB1 Connect and Cure ·

2025/06/01

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: Participat...

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25:13

Introducing Director of Fundraising Crawford McWilliams

CTNNB1 Connect and Cure ·

2025/05/15

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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50:05

Speech Therapy with Megan Stanley

CTNNB1 Connect and Cure ·

2025/05/01

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.curectnn...

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42:32

Intensive Therapy at Jd McCarty Center with Dan & Toni

CTNNB1 Connect and Cure ·

2025/04/15

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 - Goo...

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40:00

ABA Therapy with Caitlin Powderly

CTNNB1 Connect and Cure ·

2025/04/01

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 he...

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26:53

NORD Breakthrough Summit Recap with Ashley Swift

CTNNB1 Connect and Cure ·

2025/03/08

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 Summit https://www.curectnnb1.org/ #raredisease #syndrome

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48:04

Life with Multiple Diagnosis

CTNNB1 Connect and Cure ·

2025/01/30

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...

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37:36

Thanksgiving Episode

CTNNB1 Connect and Cure ·

2024/11/26

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 what we are thankful for this year. Our kids allow for a unique view of the world around us and we feel grateful to experience it with them. Please enjoy our Thanksgiving Episode. https://www.curectnnb1.org/#raredisease#syndrome

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18:56

Global Genes Week in RARE Recap with Ashley Hamic

CTNNB1 Connect and Cure ·

2024/11/15

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. This year's conference was in Kansas City, MO. I had the privilege of volunteering at the CTNNB1 Connect & Cure booth, to share information about CTNNB1 syndrome with attendees. Also attending this year was Ashley Hamic. Ashley is a CTNNB1 mom, an advocate and found...

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47:32

IEPs with Keely Ward

CTNNB1 Connect and Cure ·

2024/10/15

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 education and related services. IEPs can be intimidating, and it can be difficult to know all of our rights as caregivers. I sat down to talk with CTNNB1 mom and Educational Diagnostician, Keely Ward to learn more. She dives into the process of requesting and ...

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26:27

Welcome to new host Dan Stevens and Toni Paes

CTNNB1 Connect and Cure ·

2024/09/16

Welcome back to the Connect and Cure Podcast! I’m thrilled to have you here today. Producing this podcast has been a deeply rewarding journey, however it’s a lot to do alone. To make sure I’m bringing you the best content and perspectives, I’ve spent the past few months reaching out to parents in our community who can bring their valuable insights to the show.I’m beyond excited to introduce you to our two new team members today. Toni and Dan are both passionate, dedicated, and ready to share ...

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25:19

CTNNB1 Sibshop with Abby Turnwald

CTNNB1 Connect and Cure ·

2024/03/20

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26:29

NAPA Intensive Therapy Program with Chrissy Johnston

CTNNB1 Connect and Cure ·

2023/10/15

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32:29

Building an accessible home with Jenny Schroer

CTNNB1 Connect and Cure ·

2023/08/30

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25:37

Fundraising with Lindsay Stevens

CTNNB1 Connect and Cure ·

2023/08/03

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32:13

Diet and Exercise with Tony and Natasha King

CTNNB1 Connect and Cure ·

2023/07/11

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25:18

CTNNB1 Connect and Cure Research Conference Update...

CTNNB1 Connect and Cure ·

2023/06/18

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28:56

Community update with Emily Amerson

CTNNB1 Connect and Cure ·

2023/05/30

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35 results

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