CTNNB1 Connect and Cure Annie

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 Neurological and Physical Abilitation Center. They have several locations across the US in Los Angeles, Boston, Austin, Denver, and Chicago. They also have locations in Sydney, Melbourne, Brisbane, and London. If you check out their website, you’ll learn NAPA is dedicated to delivering innovative intensive therapy services to children with a variety of neurological and developmental needs. They embrace each child’s differences and work with them to overcome their unique challenges. They do this by designing individualized intensive therapy programs with unique combinations of speech, physical, occupational and other innovative therapies. 
We have had several CTNNB1 families attend NAPA and today I sat down with my long time friend and CTNNB1 mom, Chrissy, to learn more. 

https://napacenter.org/
https://www.curectnnb1.org/

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 learned, according to the CDC, 27% of Americans alone live with a disability, a majority requiring the use of a wheelchair or other mobility device. How amazing would it be to build a home where everyone is welcome? But where would you start? If you can’t build, could you add some accommodations? Jenny shares their building journey with us and gives many ideas and tips. Maybe someday you’ll have a similar opportunity, if so, after hearing from her you’ll know where to start. 


https://www.curectnnb1.org/

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 worry, we understand. And if you have already done a fundraiser or donated to someone else's', thank you! 

Lindsay Stevens, CTNNB1 mom of Lark, shares her fundraising expertise with us today. Please reach out to her directly for any questions or help lindsayannstevens@gmail.com


https://www.curectnnb1.org/

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 Integrated Medicine doctor to get some help with his diet. 
We are lucky to have Fraser Bridgeman, CTNNB1 mom and Health Recovery Coach, in our community. She has offered to help our CTNNB1 families with food sensitivity testing. It is done at home with a finger prick, and it will show you which foods you should avoid. She is also able to provide a mineral and vitamin level lab at cost for CTNNB1 children. You can reach out to her via Facebook or at fraserbridgeman.com for more information.
Mentioned in episode: Tony and Natasha did a training called interactive metronome. It's an auditory sensory training that is typically handled through occupational therapy. They did it at Nemours Children’s Hospital in Delaware. 





https://www.curectnnb1.org/

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 information you need can be found HERE so make sure you check it out. This includes the agenda for the day- let me just say, our speaker line up is phenomenal, including Dr. Wendy Chung, from Columbia, and Dr. Michele Jacob from Tufts University. Also provided are maps, information on meals, transportation, parking, and kid activities. This is sure to be the most memorable three days together. Please enjoy this episode and conference information with Lauren Cochran.


https://www.curectnnb1.org/

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, just to name a few. You can definitely tell serving our CTNNB1 community is her new found passion and purpose, it's shining through with her work on the board. We are so blessed to have her as part of our team.




emily@curectnnb1.org
https://www.probablygenetic.com/
https://www.ciitizen.com/rarenetwork/CTNNB1Connect
https://www.curectnnb1.org/