In this inspiring episode, host Toni Paes sits down with Jana Brown, mom to 29-year-old Jared —one of the oldest known individuals living with CTNNB1 syndrome. Jana shares her family’s decades-long journey from early misdiagnoses to finally finding answers, the power of persistence, and the lessons learned along the way. From the impact of deep brain stimulation and service dogs to the importance of advocating for your child and yourself, Jana’s story is filled with resilience, humo...
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In this inspiring episode, host Toni Paes sits down with Jana Brown, mom to 29-year-old Jared —one of the oldest known individuals living with CTNNB1 syndrome. Jana shares her family’s decades-long journey from early misdiagnoses to finally finding answers, the power of persistence, and the lessons learned along the way. From the impact of deep brain stimulation and service dogs to the importance of advocating for your child and yourself, Jana’s story is filled with resilience, humo...
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 lindsayannsteven...
CTNNB1 Connect and Cure
In this inspiring episode, host Toni Paes sits down with Jana Brown, mom to 29-year-old Jared —one of the oldest known individuals living with CTNNB1 syndrome. Jana shares her family’s decades-long journey from early misdiagnoses to finally finding answers, the power of persistence, and the lessons learned along the way. From the impact of deep brain stimulation and service dogs to the importance of advocating for your child and yourself, Jana’s story is filled with resilience, humo...
