Annie

CTNNB1 Connect and Cure

Kids EN ↓ 38 episodes

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.

Author

Annie

Episodes

Marriage and Special Needs Parenting with Jessica and Jason Robinson and Chad Wood 18.04.2023 35:29

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 special needs parenting and marriage statistics it could really scare you. First of all, the numbers are not consistent, and are all over the place. However some sites and stu...

The power of a diagnosis with Ashley Swift 03.04.2023 24:55

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 power of finding the right diagnosis and how it has helped her daughter in so many ways. (A recent article from Mark Corbett and Sayaka Kayumi from the University of Adela...

Moving Mountains with CTNNB1 mom Megan Hieb 21.03.2023 33:37

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 our podcast that she donated her fundraising money to the CTNNB1 Foundation. The CTNNB1 Foundation is based out of Slovenia, and was started by Špela, mother of Urban, who...

Mini episode with guest host Preston, age 12 07.03.2023 4:43

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

Sometimes I feel like an imposter with Toni Paes 06.03.2023 25:37

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 feel this way when you're encouraging and supporting others, but struggling yourself. We've all been there. Please enjoy her honesty and vulnerability as she shares...

Navigating the tough school years with Patrice Bradley 23.02.2023 34:44

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 advice about getting your child through the tough school years. https://www.curectnnb1.org/ #raredisease #syndrome

Single Parenting with Heather Murphy 10.02.2023 26:40

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

Self care with Fraser Bridgeman 07.02.2023 21:23

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 tips and information on living a healthy life. https://www.curectnnb1.org/ #raredisease #syndrome

CTNNB1 Connect and Cure Board Update 31.01.2023 4:55