Weekly Updates! - November 7, 2025

Hope everyone has had a great week. Only a few updates this week:

‍

• Upcoming event: TBRS Friends and Family Support Group - November 20, 2025
  
  • This event will take place Thursday, November 20, 2025 at 7:00 PM Eastern Time via Zoom
    
    • Here is the link to join: 
    • https://us02web.zoom.us/j/85974821092
  • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. 
  • Any parents or caregivers of someone diagnosed with TBRS are welcome.

‍

• REMINDER: Tired of repeating your story? Now there’s an easier way.
  
  • AI Advocate (beta) puts your medical records and personalized answers in one secure place—helping you understand your care, spot what matters, and prepare for what’s next. 
  • Families who try AI Advocate before Nov 30 will automatically be entered into Citizen Health’s $5,000 Caregiver Recharge Giveaway.
  • Sign-up takes about 5 minutes
    
    • Unfortunately, Citizen Health is currently only able to pull records for families in the United States, but are working towards other countries in the future.

‍

• REMINDER: Registration is Open for the 2026 TBRS Super Summit!
  
  • We’re excited to announce that registration is now open for the 2026 TBRS Super Summit! 
    
    • This year’s event will take place March 19–22 at the beautiful Morgan’s Wonderland Camp in San Antonio, Texas.
  • The Summit is our biggest gathering of the year, bringing together families, researchers, and clinicians to connect, learn, and work toward the future of TBRS care and research. From expert-led sessions to hands-on activities, it’s a weekend filled with knowledge, support, and lasting friendships.
    
    • Both in-person and virtual options are available, so everyone can take part—whether you’re joining us at the camp or tuning in from home.
  • Save the dates:
    
    • Family arrival: Thursday, March 19
    • Scientist/Researcher arrival: Wednesday, March 18
  • Stay tuned for more details about the schedule and speakers. We can’t wait to see you there!
  • Click here for more information!

‍

Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org. Happy weekend!

Kit Church, CARE Manager

‍