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.
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 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.
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 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.
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 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 firstname.lastname@example.org
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 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.
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 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.
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 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.
This podcast has been such an eye opener and helped so much to navigate this disruptive disorder. Such extreme joy yet such a difficult path to follow. Thank you so much for exploring and sharing others trials and triumphs. We have learned a lot, tried a lot of new things and shared a lot thanks to this podcast. I always look forward to the next one. Thanks and blessings to all on this journey with us.
Rare disease families everywhere can relate
Annie is such a warm hug. I am so thankful to her for putting this podcast together and sharing so openly about her experience and creating a place for others to do the same. Being a rare disease parent, especially the beginning is such an isolating place and this podcast will be a lifeline for so many. It doesn’t matter what disease group you come from, our experience is so similar and you will resonate with this content. Thank you
Great start, we are looking forward to where this podcast leads you. Annie is such a beautiful person and my wife and I were so blessed to get to meet her and Chad at the conference in Illinois over the summer.