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...
All content for CTNNB1 Connect and Cure is the property of Annie and is served directly from their servers
with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
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...
Many of us with children in the US school system have probably heard the term IEP. This Individualized Education Program (IEP), regulated by the US Department of Education, is for each public-school child who receives special education and related services. IEPs can be intimidating, and it can be difficult to know all of our rights as caregivers. I sat down to talk with CTNNB1 mom and Educational Diagnostician, Keely Ward to learn more. She dives into the process of requesting and...
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...
