Episodes

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 …

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...

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...

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 …

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...

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 …

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 …

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 …

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 …

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 …

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 …

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...

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...

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 …

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...

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...

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.

Toni Paes is a mother of four from Oklahoma. Her youngest Bella has CTNNB1. Even with all the experience and success she has had parenting her children, she still has days where she feels like an imposter. It's easy to …

Patrice Bradley joins me today to share about her daughter Alyssa. Alyssa wasn't diagnosed with CTNNB1 until she was 13 years old. She is now 18 years old and a senior in high school. Patrice shares some real moments and …

CTNNB1 mom Heather Murphy joins me today to talk about parenting a rare child with special needs as a single mother: the difficulties it brings and tips on what has helped her.

I’m excited to have another CTNNB1 mom on with me today. Fraser, mom of Makayla, is a Health Recovery Coach, Integrative Health Practitioner & has a Kids Natural health Podcast. Follow Fraser Bridgeman on Facebook for many t...