Episodes

May 31, 2025

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 informa...

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May 15, 2025

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...

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April 30, 2025

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. ...

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April 14, 2025

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 ...

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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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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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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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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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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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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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Sept. 16, 2024

Welcome to new host Dan Stevens and Toni Paes

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...

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March 20, 2024

CTNNB1 Sibshop with Abby Turnwald

Shortly after Preston’s diagnosis I learned about Sibshops. Sibshops are in person or virtual events where special needs siblings will meet other sibs, have fun, laugh, talk about the good and not-so-good parts of having a si...

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Oct. 15, 2023

NAPA Intensive Therapy Program with Chrissy Johnston

If you are on Facebook or Instagram I am sure you have seen many of our CTNNB1 children at NAPA, but if any of you are like me you’ve wondered what is it? What do they do there? How do I get my child there? NAPA stands for Ne...

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Aug. 30, 2023

Building an accessible home with Jenny Schroer

Today I sat down to talk with Jenny, CTNNB1 mom of Miles. They were given the opportunity to build not only an accessible home for their son, but a forever home for themselves. I think this is incredible because I’ve recently...

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Aug. 3, 2023

Fundraising with Lindsay Stevens

We all know we won’t be able to keep pushing forward without funding, but it’s not always something fun or easy to talk about. If you are looking to start a fundraiser, listen in for some ideas. If it’s not your time, don’t w...

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July 11, 2023

Diet and Exercise with Tony and Natasha King

Tony and Natasha King spoke at our CTNNB1 conference last month. One of the topics that piqued a lot of interest was Tony Jr.’s diet and exercise program. In this episode, the Kings share how they took Tony Jr. to an Integrat...

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June 18, 2023

CTNNB1 Connect and Cure Research Conference Update with Lauren Cochran

We are just a few short days away from the CTNNB1 Connect and Cure Research Conference at Drew University in Madison, New Jersey. So today I checked in with organizer Lauren Cochran to get any last minute details. All the inf...

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May 30, 2023

Community update with Emily Amerson

There are so many things going on in our CTNNB1 community. Board member, Emily Amerson, discusses many things she has been working on and involved with. I don't think there is one thing this momma can't do. She has pushed us ...

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May 8, 2023

Tackling tough topics with Renee Cunningham

CTNNB1 mom Renee Cunningham tackles some tough topics. Renee shares why they decided to put her daughter on medicine and about puberty with her daughter. We are not giving medical advice, just sharing one parent’s struggle to...

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April 28, 2023

To travel or not to travel with Julie Anderson

To travel or not to travel has been the question lately on our family Facebook page. Many families understandably decide not to travel, it’s just not worth the stress. In March there was the first international CTNNB1 confere...

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April 18, 2023

Marriage and Special Needs Parenting with Jessica and Jason Robinson …

I am excited to have my husband Chad joining me for the first time on today’s episode. We sat down with CTNNB1 parents Jason and Jessica Robinson to discuss marriage with a child that has special needs. If you were to google ...

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April 4, 2023

The power of a diagnosis with Ashley Swift

CTNNB1 mom, Ashley Swift, shares the incredible story of how her daughter was misdiagnosed with Cerebral Palsy. She even went against one doctor's recommendation and got her daughter, Evelyn, genetic testing. Hear about the p...

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March 21, 2023

Moving Mountains with CTNNB1 mom Megan Hieb

Meet CTNNB1 mom, Megan Hieb. For her daughter Lucy's first birthday she decided to do a GoFundMe page that has made over $112,000 for CTNNB1. See her video at https://www.youtube.com/watch?v=ei3uEtG5n-M . Megan mentions in ou...

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March 7, 2023

Mini episode with guest host Preston, age 12

This is what this is all about, our children. Please enjoy this mini episode as Preston, age 12, shares some of his feelings about having CTNNB1.

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