CTNNB1 Connect and Cure

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 forward with our website and social media, and she's working on so many different projects and ideas- a welcome letter, brochure, Ciitizen, and Probably Genetic...

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 make difficult decisions for her child. As we wrapped up we talked about summer plans. I think this is a stressor for many of our families. Our children are used to keeping b...

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 conference in Madrid, Spain. When I saw Julie Anderson was attending, flying in from New Jersey, I knew I had to hear about her adventure there. Her passion for traveling has long be...

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...

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...

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...

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

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...

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

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

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

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

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

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

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

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