A Lifetime of Love with Jana Brown

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, humor, and heart. Whether you’re a newly diagnosed family or a long-time member of the CTNNB1 community, this conversation is a powerful reminder that, as Jana’s mother once said, “They’re the same child they were before the diagnosis.”https://www.curectnnb1.org/#raredisease#syndrome